ESIG: Ask an expert, is your place to get answers from professionals who have a special interest in the treatment and management of endometriosis.These questions have been asked by people like yourself, wanting to learn more about endo and how they can best manage symptoms.
If you have a question about a topic not already answered by ESIG please send it to us and we can get it answered for you.
2020, Responses from: Endometriosis New Zealand
ESIG has expertise in treating and managing endometriosis, adenomyosis and pelvic pain. That means the information is reliable. You’ll find heaps of information just by scrolling through these files on things like: surgery, nutrition, pain, exercise, how multi-disciplinary management works and tons more.
We’ll let you know when we’re back. xo
September 2020, Responses from: Dr Jeremy Meates and Prof Neil Johnson
Jeremy Meates: If there has been laparoscopic removal of all the Endometriosis but there is ongoing pain then it may be arising from the muscles and nerves and a hysterectomy may not resolve this. However if there is ongoing problematic bleeding which hasn’t responded to other treatments and there is no desire for fertility then hysterectomy may be the most appropriate option. Following hysterectomy you won’t get any bleeding and you will no longer need to take hormone treatments to try & stop the bleeding. If there is uterine pain then hysterectomy will remove this source of pain. Furthermore it will most likely lead to improvement in other causes of pain from sensitive nerves & tight muscles.
Neil Johnson: This is distressing – feeling like all options short of hysterectomy have been explored and still the symptoms persist. Have other options been explored – such as involvement with a multidisciplinary team, including a specialised pelvic physiotherapist or even pelvic floor muscle Botox injections (commonly there is secondary pelvic floor muscle spasm perpetuating pain in this kind of situation); a good nutritional approach; support of medical and surgical therapy from a good clinical psychologist; nerve block injections with long acting local anaesthetic/steroid to support laparoscopic surgery; complementary therapies such as acupuncture? In fact, although endometriosis is classically a disease occurring outside the uterus, hysterectomy can often go a long way to solving many of the problems associated with endometriosis, especially if undertaken laparoscopically in skilled hands and combined with meticulous excision of endometriosis and division of adhesions – there’s often adenomyosis hidden away which is commonly a contributing cause to persisting pain problems (hysterectomy solves this), many of the cyclical problems ease post-hysterectomy – and definitely there’ll be no continual bleeding once recovery from surgery is complete. Although not a completely accurate predictor, it can often be a good guide to the possible impact of hysterectomy on symptoms to undergo up to a 6 month course of Zoladex injections with add-back hormone therapy (continuous combined) – if this helps a lot with symptoms, there’s a strong chance that hysterectomy will be effective, so this course of medical therapy with a view to surgery if Zoladex works can offer a lower invasive guide as to the likely effectiveness of surgery.
Jeremy Meates: Assuming that you have had a check up with your gynaecologist and he or she is satisfied that there is no immediate concern or evidence of pathology that needs to be addressed, I would suggest the following
Other general measures which aren’t directed toward treating the pain specifically but are likely to be beneficial plus they have no side effects.
Finally, people will often respond differently to various medications, operations or medical interventions. What may work well for some may not be effective for others. If there have persisting symptoms keep trying new things and don’t lose hope.
Neil Johnson: This is also distressing and tricky to manage. But again, some of the multidisciplinary options might prove helpful – pelvic physiotherapy, pelvic floor muscle Botox injections, nutritional approach; clinical psychology, nerve block injections, complementary therapy. In addition, we found that our paper on endometriosis self-management strategies might yield some helpful strategies – this paper was hastily put together by an international team intended to assist endometriosis sufferers during COVID lockdown – but those suffering from endometriosis recognise that self-management strategies can be helpful at any time and not just in relation to the pandemic – it won’t all be relevant, but I hope you’ll find some pearls of wisdom in this Human Reproduction Open link.
Endometriosis is a common cause of pelvic pain, which can be severe and debilitating. It is caused by deposits of endometrial tissue in the wrong place, ie scattered around the lining of the pelvis, rather than remaining in their correct position in the lining of the womb. At the time of the period these deposits can cause bleeding and inflammation of the pelvis leading to pain and scarring. Laparoscopic surgery is often performed to both diagnose endometriosis and to treat it. Treatment involves surgically removing the inflammatory deposits and releasing adhesions caused by scar tissue. This type of surgery is associated with a significant improvement in pain for most women and it can also improve fertility.
However endometriosis is only one cause of pelvic pain and there are other common causes. When treating pelvic pain it is usually necessary to address all contributing factors.
We tend to think of factors that contribute to pain in 4 categories
1. Organ related pain
2. Nerve sensitivity that occurs secondary to chronic pain
3. The musculoskeletal response to pain
4. The psychological component of pain.
Organ related pain: Pain may originate from the abdominal or pelvic organs such as the uterus, ovaries, bladder and bowel. Uterus-related pain is very common at the time of the period. Ovary-related pain is highly variable. Some women experience quite severe ovulation pain while others may only notice slight discomfort. Bladder-related pain may lead to lower abdominal pain, frequent urination & a need to go to the bathroom urgently. It may feel like a urinary infection but often the urine samples are clear confirming it as irritation rather than infection. If you have urinary symptoms it is important of have a urine sample analysed in the laboratory to clarify the nature of the symptoms because recurrent bladder irritation, which is common, will be treated differently from recurrent infection. Bowel-related pain may be very common and patients with endometriosis often describe symptoms of variable bowel frequency, ranging from constipation to diarrhea. They may have a diagnosis of irritable bowel syndrome and symptoms are often helped by dietary modification.
Treatments to reduce uterine pain or period pain may include pain relief medication that is taken at the time of the period, or may involve trying to suppress the period with hormone treatment. Typically this will be with progesterone or with the combined oral contraceptive pill (COCP). It is called the Combined Pill because it contains 2 hormones, estrogen and a second hormone, which is usually progesterone, but there other alternatives. The COCP can be manipulated to reduce the frequency of periods and period pain. For example skipping the sugar tablets & only having these after every third or fourth packet.
Progesterone treatment can be given as a tablet, norethisterone or provera, or a progesterone only contraceptive pill such as Noriday or Cerazette; as an injection, depo-provera; as a rod implanted under the skin, Jadelle; and it can be delivered within the uterus with a levonorgestrel intra-uterine system (L-IUS) such as a Mirena or a Jaydess.
In some cases where women have completed their family or they are sure that they have no desire to get pregnant, a hysterectomy may be performed. This will mean there is no more bleeding and no more uterine pain. This can be particularly effective in cases where adenomyosis is present (this is when Endometriosis is present within the wall of the uterus).
If ovulation pain is severe then the COCP is often used to suppress ovulation. Sometimes strong medication to inhibit ovarian function is used such as GnRH analogues like Zoladex or Lucrin but these can only be used as short term measures (a few months rather than years).
Endometriosis lesions in the pelvis may be regarded as an organ-related case of pain. Treatment can include simple pain relief, or hormone treatments designed to suppress menstrual bleeding, as above, or surgery to remove or cauterise the lesions.
Nerve sensitivity: Typically when there is an injury such as a twisted ankle, a broken arm or a burnt finger the pain nerve fibres in the affected tissue will be activated. When they are active minor things such as light touch or pressure will lead to pain in the area. Eventually as the injury heals the pain nerves return to their resting inactive state. However when there is repeated pain & repeated activation of the pain fibres, such as with monthly period-related pain then the pain fibres may not return to their resting state but remain activated or partially activated for months on end. This leads to a lower threshold for a pain signal, ie things such as pressure and touch that wouldn’t normally be regarded as painful start to cause pain. Quite often patients report that they can’t wear tight pants due to pain or discomfort.
As well as making the pelvic area more sensitive this nervous system sensitisation can be associated with other non-specific symptoms such as poor sleep, low mood, anxiety, nausea, sweating, dizziness and extreme fatigue.
Medications such as Amitriptyline, Gabapentin, Pregabalin & Venlafaxine can be used to help with nerve sensitivity and so can lifestyle measures such as exercise (as long as it doesn’t exacerbate the pain), mindfulness, meditation, acupuncture and many other non-medication strategies.
The musculoskeletal response to pain: During times of pain such as severe period pain it is common for the muscles around the area of pain to contract and tighten. If they are contracting for a prolonged period of time they may get achy & sore. A familiar example of this would be the aches & pains you feel for a few days after doing some unfamiliar activity such as a busy weekend gardening, or going to the gym for the first time in a while, or in sport after playing the first game of the season. Patients will often describe aching type pain in the pelvis, which often radiates to the back to cause lower back pain or down the legs to the thighs.
If tightening of the muscles happens repeatedly over the course of months or years it may lead to the muscles going into spasm. This type of pain is similar what it feels like if you get a bad cramp in your leg. It’s a severe, stabbing pain. Often 8-9/10 severity. Sometimes people feel like they can’t move or can’t walk when this happens. They may lie on the floor or in bed curled up until the spasm passes. Typically this type of pain does not respond well to common pain relief medications such as paracetamol, codeine, tramadol and anti-inflammatories like ibuprofen, naproxen & diclofenac. Often heat treatment with a wheat pack, a bath or a hot shower will help.
Pelvic muscle spasm is a common reason for patients to present acutely to the Emergency Department with severe pain. Often they are given morphine or morphine derivatives such as oxycodone or sevredol, which may or may not be effective. Medications that help with muscle relaxation are often helpful.
Pelvic muscle tenderness may be diagnosed by palpating the pelvic muscles during an examination. Patients with moderate to severe pelvic muscle tenderness will often complain that it hurts to use tampons or hurts to have sex and that having a smear is painful rather than just being uncomfortable.
Gentle exercise such as going for a 10-20 minute walk followed by stretches for the pelvic muscles may be helpful (see the link below). Treatment with a pelvic health physiotherapist can be hugely beneficial. Try and avoid activities that trigger muscle spasm. This will vary with each individual but common triggers include core exercises like sit-ups, crunches & planks, and walking & running up hills or walking up a lot of steps (sometimes a problem if you live in a hilly city).
In some cases we will use Botox injections into the pelvic muscles to relive spasm. This is done in hospital, with the patient asleep under a general anaesthetic and it often causes a ‘flare up’ of pain for a week or two after the procedure. Physiotherapy treatment is particularly helpful following Botox treatment.
Hysterectomy is a very effective treatment for problematic bleeding and period pain or uterine pain associated with adenomyosis but it doesn’t specifically address pelvic muscle spasm and nerve sensitivity. Having said that, muscle tightness will often be improved for 3-6 months after surgery because patients are usually given a muscle relaxant medication as part of their general anaesthetic. Furthermore if the period pain is the cause of the muscle tightness and the nerve sensitivity in the first place then removing the cause will help in allowing these to resolve, and it usually does.
However from time to time there may be persistent pelvic pain following a hysterectomy operation and it is often associated with significant pelvic muscle tenderness. Many of these patients (although not all) respond very well to Botox treatment. However in the first instance simple treatments such as stretches, gentle exercise and physiotherapy input will be recommended before a Botox procedure.
The psychological component of pain: If you have chronic pain or recurrent severe episodes pain you may start to feel frustrated and upset. If you are unable to continue with your work or other day to day activities during times of pain you may start to feel guilty. If the pain continues to deteriorate you may experience low mood or feel despondent. If treatments have been ineffective you may feel that there is no hope. The cost of doctors visits & prescriptions adds up over time & can cause financial pressure and lead to feeling ‘stressed’. Stress and negative thought patterns tend to make the experience of pain more prominent hence it can be a vicious cycle.
All activities and strategies that help to reduce stress are helpful in day to day management of chronic pain. This can include deep breathing exercises, meditation, yoga, etc. Or may include a ‘distraction’ such as a hobby or interest. A gratitude journal can be helpful.
August 2020, Responses from: Roberta Mek and Deborah Bush
Firstly – I am so sorry you’re facing a long wait to get your surgery. I hope that the following ideas will ease your symptoms and offer a plan to help get you through.
Work with your GP to ensure your interim needs can be met while you wait for surgery. Maybe a list would help to keep you on track during the consultation. Things you might want to include:
I hope some of these ideas will help you through this rough waiting time. You can also book online for a free half hour phone appointment with ENZ.
Firstly, I’m sorry to hear that your surgery got declined and you left to suffer from endometriosis symptoms.
While you are figuring out your next steps, here are a few tips for self-care. For most of the suggestions be prepared to give some time. You may not get instant relief, but they will keep you going and you will enjoy the long term benefits.
Of course, this mix of symptoms, especially chronic pain, may cause stress and anxiety. You could consider seeing a counsellor or psychologist who specialises working with chronic pain patients. Alternatively, try some relaxation techniques like gentle yoga, mindfulness or/and meditation. Joining an endometriosis support group like Endometriosis New Zealand will give you a sense of belonging that you are not alone battling these symptoms.
July 2020, Responses from: Dr Jane Girling, Dr Anna Ponnampalam, Dr Michael East, Prof Neil Johnson
The short answer, yes. Yes, there is research on endometriosis being undertaken here in Aotearoa New Zealand. And we hope the research base is growing. But perhaps we need a more informative answer.
Internationally, the amount of research on endometriosis has been growing rapidly over the recent decades. If we consider one of the currencies of science, publications in peer-reviewed scientific journals, the pattern is clear. I have just had a quick look on PubMed, which is one of the search engines we use to search for articles of interest. If I just search for ‘Endometriosis’, a total of 28,177 articles are listed. If I restrict that to publications in 1980 only, there were 196 articles. In 2000, it was 455 articles. In 2010, 1,103 articles. In 2019, 1,473 articles. And we will give 2020 a few more months to run before we look at that tally.
The thing about good science and research, including studies on endometriosis, is it needs to be international and collaborative, incorporating diverse skills and expertise from teams all over the world. Perhaps a good example is the research on the genetics of endometriosis – studies trying to tease out how our DNA contributes to the beginnings and the progress of the disease. This work has been done by a consortium of researchers from Australia, the UK, Japan, the USA and others. Without the international effort, the funding, expertise and large number of patient participants could not have been achieved. It is the combined effort that helps us make progress. That does not and should not exclude Aotearoa New Zealand. Even our little country (little in terms of population size I mean…) needs to play its part!
Another factor that makes it tricky to research endometriosis is the nature of the disease itself. If we need to get samples of tissue to work on, surgery is required, and I know none of you approach surgery without good cause. This is particularly true if we need samples from individuals without endometriosis. Further, because surgeons will remove all the lesions they can during a surgery, we cannot watch how individual lesions change over time. We can do lots of experiments with cells and tissues in the laboratory, but once cells are out of their microenvironment in the body without its blood and nervous supply and the surrounding cells and tissues, they just do not act in quite the same way.
From a symptom perspective, pelvic and menstrual pain is something we need to understand. Trouble is, pain is notoriously difficult to study, particularly visceral pain (pain caused by signals coming from our internal organs, such as the uterus or intestine). It is not something that we can easily quantify and we know that the nature of an individual’s pain does not necessarily match the extent of disease that a clinician might see during surgery. Someone with a few small lesions can still be dealing with wicked pain. Pain involves complex pathways in the body and brain that may often cause problems beyond the original cause or insult. That is not to say that endometriosis is a disease that cannot be studied, it just means us researchers have to be more creative. And the more people with different perspectives trying to be creative the better!
Endometriosis is a female disease most strongly linked with menstrual period pain. Historically, women’s health – female health – has taken a back seat. That is changing now, but we still have a way to go. My opinion, but there is still a tendency for many of us humans, particularly in the Western tradition, to be squeamish about anything related to menstruation. Can you see me rolling my eyes – yup, it can be a bit messy, but it is a normal bodily process and actually quite an amazing one if you consider what the whole process of menstrual cycles is about (preparing the body for a potential pregnancy). If a normal bodily function is causing problems, we do something to deal with it. Endometriosis should be no different.
So, now that I have jumped off my soap box, what sort of research is being done here in Aotearoa New Zealand. Since I returned to Aotearoa New Zealand a couple of years ago, I have been working with some amazing people to establish new projects. With Endometriosis New Zealand, we have just started to explore the unmet needs of individuals with endometriosis. This work is being done in collaboration with colleagues in Australia, but it is important that we also take a very particular look here in Aotearoa New Zealand as well. While many unmet needs are shared by those with endometriosis wherever they may be, there are also specific needs unique to every community. Aotearoa New Zealand is no exception. We are also starting to explore the nature of menstrual health in Aotearoa New Zealand – how menstrual characteristics change as you go from puberty to adulthood and the extent of menstrual problems in our community. Another study – not exactly endometriosis, but sort of relates – aims to look at the nature of reproductive knowledge in our young adults. How much do they actually know about menstrual cycles for example? We are also just starting to explore the potential interactions between endometriosis and PCOS (polycystic ovarian syndrome). I am also still collaborating with the team at the University of Melbourne and Royal Women’s hospital studying the heterogeneity (I love the sound of this word. It means diverse, non-uniform, dissimilar) of lesions and disease phenotype (characteristics we can observe; e.g. size, shape) in individuals with endometriosis. This is just an overview of the work I am involved with – it is not a national summary. There are several great research teams considering different aspects of endometriosis, including teams in Christchurch and Auckland. As further examples, I will pass over to Mike, Neil and Anna to summarise the work they are involved in:
Dr Anna Ponnampalam: “I am a reproductive biologist at the University of Auckland who is trying to understand the epigenetic changes in the development of endometriosis. Epigenetics (means over and above genetics) mechanisms control which genes are expressed or stopped at certain times and can be passed down from parent to child even though they do not change a person’s DNA sequence (think about differences in identical twins). I believe abnormal epigenetic changes to DNA might in part play a role in the development of endometriosis and am researching to find out more. I am also interested in investigating menstrual blood to determine whether I can find any unique molecules that could be used to diagnose endometriosis easily.”
Dr Michael East: “I have a 2-3 year study looking at inflammatory compounds such as various cytokines and reactive oxygen species (ROS) to name but two. I have so far recruited 41 women out of 100 needed. Women with endometriosis have been shown to have increased levels of inflammatory compounds in their peritoneal fluid. Such compounds are thought to be responsible for many of the symptoms of endometriosis including sub-fertility. I am attempting to show that excision of endometriosis results in lower levels of such compounds in both the peritoneal fluid and the blood stream. I am working with post doctorate scientist Teagan Hoskin. Approval for the study has been granted by the local ethics committee.”
Prof Neil Johnson: “Most of my work is based on international collaboration. Our main research thrust at present is in network meta-analysis and, having completed a network meta-analysis that examined all fertility treatments for women with endometriosis, we are in the throes of undertaking network meta-analysis for treatments for pain and quality of life impacts for women with endometriosis. This will allow direct and indirect comparisons of all treatments that have been truly assessed by randomised trials and it will allow us to develop a hierarchy of effectiveness of these treatments. Our other research is involved with developing criteria for networks of expertise in endometriosis, which will link in nicely with New Zealand’s new Pathway of Care for Endometriosis, as we endeavour to attain better structure of care for endometriosis in New Zealand. And of course, I’m always working on lipiodol, as the most important research discovery in advancing fertility for women with endometriosis that I’ve made in my career.”
So, yes, there is research going on endometriosis in Aotearoa New Zealand. We may not be huge in number, but we certainly hope that our local researchers punch above their weight in their efforts to understand this disease. We recognise the trauma of living with a chronic reproductive condition; we acknowledge the pain that you deal with on a daily basis. But please be patient with us. Everything takes so much longer than we hope – especially research. Nothing good is ever easy, but we are working on it! We all hope that breakthrough is not too far beyond the horizon.
Ngā mihi nui.
June 2020, Responses from: VP Singh, Roberta Mek, Hannah Blakely, Lakshmi Ravikanti, Phill McChesney and Neil Johnson.
It’s natural to be worried about fertility after the diagnosis of endometriosis. Most women will have normal fertility as long as they don’t leave it too late. It’s ideal to look at having a family between 20-30 yrs as the egg quality is the best but obviously this depends on one’s social circumstances. One option is to get an AMH test for checking ovarian reserve which a key concern for many patients with endometriosis. It is a simple blood test obtained through fertility clinic and offers accurate assessment of egg reserves. There is now a reliable option of freezing eggs for future to mitigate risk of loss of egg supply and quality with age.
1. Know the correlation between age and chance of getting pregnant or ‘biological clock’ e.g. chance of getting pregnant per month at 25 yrs is 25% versus 5% at 40.
2. Healthy lifestyle- BMI 20-25, avoid smoking, alcohol drugs, take folic acid, Mediterranean diet, reduce coffee intake
3. Know your egg reserves through a simple test called AMH test, if AMH low then consider freezing eggs or embryos for fertility preservation
4. Consider pre-pregnancy bloods through GP e.g. Rubella Immunity, Hep B, HepC, HIV, Blood group, Chicken pox immunity and VDRL screen
5. know your partners health and if delay consider a semen test, 30% sub fertility is caused by male factor, male lifestyle matters too, he needs to avoid smoke, alcohol, drugs, hot spa baths, tight briefs, take foods rich in antioxidants
6. Know your fertile window, 2-4 days before ovulation is ideal time to try, for someone with 28 days regular cycles the day of ovulation is generally day 14
Seek help through fertility clinic if not pregnant within 12 months
I am really sorry to hear that. Endometriosis seldom takes away all chances of pregnancy completely e.g. technologies like egg donation, embryo donation and surrogacy are possible. There are some really well qualified fertility counsellors in NZ and their help along with some support from ENZ and a clinical psychologist should help with with overcoming the grief of infertility which can be really overpowering. Best wishes.
In the first instance it is important to have this client’s experience validated. Firstly the longevity of untreated or poorly managed symptoms of endometriosis is highly distressing together with subsequent result of infertility. It would be expected one would experience a grief process. Within this are stages of grief. These are usually not linear and can be more apparent or triggered due to life stages and circumstances e.g. being in a relationship or ready to want to conceive.
The comparison between one’s ideal and reality when infertility is realised can be highly distressing. This distress may involve feelings of sadness, guilt and anger among others at unexpected times. A stage of denial – avoidance of belief the problem not happening and bargaining – trying to resolve the infertility without effect can occur also. A final stage may come in the form of acceptance – that is understanding infertility is the reality rather than ideal and then coping with this.
Coping can take many forms depending on what fits for the client and the stage at which one or they may be. Experience of emotional distress is normal however for some can be difficult to tolerate or have consequences to self and others through unhelpful behaviours. If this is the case and mental health is impacted upon, learning helpful strategies to manage unwanted thoughts feelings and behaviours can be useful. Mental health professionals can provide support for example mindfulness based and behavioural strategies to encourage tolerance of unwanted emotions and thoughts/ responses to news of infertility.
Remaining socially engaged and is important to help feeling connected and keep communication open. Response to information that doesn’t fit with one’s ideal is normal. If this distress doesn’t resolve or reduce over time access psychological support for an individual or couple whatever the circumstances can be helpful.
Implanon contains Etonogestrel and Mirena contain Levonogstrel, both of them work in similar fashion as both are progestin only contraceptives. Implanon is inserted subcutaneously under local anaesthesia into arm. Mirena is inserted into the uterus under Local anaesthesia or with oral analgesia. Brazilian RCT showed that both of them equally improved significantly non cyclical pelvic pain, dymenorrhoea and healthy related quality of life in endometriosis.
Mirena has little more advantage as it lasts for 5 yrs compared to Implanon which lasts 3 years only.
I would recommend implanon to woman with cervical stenosis if they are not keen to undergo general anaesthesia.
Both Implanon and Mirena are very acceptable long acting contraceptive options for medical treatment of Endometriosis. A study published in Fertility and Sterility in 2018 found no significant difference between Implanon and a product similar to Mirena in terms of treatment of pain and quality of life. However, in practice, about 25% of women have Implanon removed early due to side-effects, particularly irregular bleeding and headaches. Mirena tends to be better tolerated with >90% of irregular spotting stopping within 6 months and 30% of women becoming amenorrhoeic (no periods) which is higher than Implanon. Systemic side effects also tend to be less common with Mirena than Implanon.
In my practice I prefer Mirena as I find my patients do well with few side effects. On the odd occasion someone wants it removed early, it is also much easier to remove than Implanon.
No doubt – the Mirena. We have far more high quality information on the effectiveness for Mirena. With Implanon, the info is much more limited – and as any effectiveness for treating endometriosis relies on a systemic dose of hormone, the side effect profile would be expected to be higher with Implanon.
May 2020, Responses from: Dr Simon Edmonds, Dr Philip Suisted and Dr Simon McDowell
Dr Simon McDowell
This is always a tricky situation in any professional (or even personal) context. Having doubts about the persons opinion or recommendation, or that they believe what you are saying is true. In the medical context, this process is actually very clear. There is a formalised and transparent process.
The Medical Council of New Zealand quotes:
“seek a second opinion if you have questions about any aspect of your treatment. Tell your doctor you would like a second opinion, and ask for the name of another doctors. You don’t have to argue or justify your decision”
This is in a document titled ‘You & Your Doctor’ – A guide to your relationship with your doctor.
Many patients, probably most, will do some online searching with regards to their potential or proposed medical problems. Sometimes it can be difficult to delineate what is ‘real’ and what is ‘not’. Symptoms of many conditions can be vague, and attributable to many different things. Bloating for example is a condition often attributable to endometriosis. But is can caused by many other disorders, dietary factors are very common. A good doctor will take in to account all of these symptoms, signs (ie. what we see or palpate), investigations, and things like the patients age and background. Then, they will determine what problems may or may not be causative. and most importantly what the options are going forward.
It may be useful to reflect that a doctor is weighing on many different sources of information, with critical appraisal of that information, not just taking what is read as being real. Experience is also an important facet, not only in recognising key trends but also knowing when a ‘gut feeling’ should be ignored.
A good clinician will value a second opinion. They will ask their colleagues what they think about a case or situation, what they would do, even ask a few different colleagues to perhaps gather some reassurance that a proposed course of action is reasonable. A good clinician will not be afraid of a patient asking for a second opinion. They will promote the sentiment of gathering additional analyses and opinions.
A doctor should believe what a patient is saying is reflective of what they believe. No person, patient or doctor should feel like they are being ignored or that they are not being believed.
Dr Simon Edmonds
This question sadly is heard repeatedly by specialists when patients become frustrated that they are not being heard. The reasons are complex and multifactorial and rarely down to a specific doctor – most of whom will be used to dealing with a patient’s health concerns and identifying symptoms.
Part of the problem is that some doctors in primary care may not have the knowledge and experience of dealing with women’s health issues. It is not that they don’t ‘believe’ you – if you have pain then you have pain! More that they may not link particular symptoms with endometriosis. They may also not have easy access to local specialists through the public system and this unfortunately can be very variable across New Zealand depending which is your local District Health Board.
From a practical perspective, if you feel that your voice is not being heard, then consider trying a different Doctor or ask if there is one in the practice who may have an interest in Women’s Health. Even when some women are referred to secondary care and may see a generalist gynaecologist, it can be difficult for them to obtain appropriate investigations and treatment. Our advice is to keep trying, make a diary of your symptoms to take with you, don’t give up hope, utilise the various social media groups and ask Endometriosis NZ for advice, but also keep asking for a specialist opinion if your symptoms do not improve. If you have private insurance you can also consider direct referral to a specialist.
Dr Philip Suisted
Pain bias: The health inequality rarely discussed by Jennifer Billock, BBC
Physician Judgments and the Burden of Chronic Pain, John T Chibnall, Raymond C Tait, PhD, Julie K Gammack, Pain Medicine, Volume 19, Issue 10, October 2018, Pages 1961–1971
April 2020, Responses from: Justin Sinclair and Mike Armour
Based on preliminary survey evidence compiled from women self-reporting the use of illicit cannabis to manage their pain and endometriosis-associated symptoms it appears that cannabis can not only assist with pain, but also mental health (i.e. depression and anxiety symptoms), gastrointestinal upset (e.g. endo belly), nausea and vomiting and sleep. The fact that cannabis has numerous phytochemicals that have well reported analgesic, anti-inflammatory, anxiolytic (reducing anxiety), sedative and anti-inflammatory actions goes some way to explaining the pharmacological effects it has and why it may benefit women with a wide constellation of symptoms with endometriosis.
Medicinal cannabis is grown to incredibly high quality assurance standards and must meet regulatory guidelines to be free of things such as microbes, aflatoxins, heavy metals and pesticide and fungicide residues. It is also grown in consistent and highly monitored environments that allow for standardisation of key active ingredients, such as d-9 tetrahydrocannabinol (THC) and cannabibidiol (CBD). This latter point is incredibly important when one considers the desire for reproducible results every time you take a medicinal cannabis product. Illicit cannabis is generally bred to contain very high amounts of just THC, which is the main constituent involved with the analgesic and intoxicating activity, making the user feel stoned if taken in high doses. In short, whilst both ‘ types’ of cannabis essentially come from the same plant, the main differences are in the scientific rigour that goes into utilising specific cannabis varieties for their medicinal benefits whilst also being manufactured to a high quality standard, whereas illicit cannabis is not able to provide similar levels of assurance. Another key difference which we are hoping changes soon is the cost – for obvious reasons medicinal cannabis products are currently quite expensive, sometimes double or more in cost to that which could be obtained from the illicit market.
This depends on the type of medicinal cannabis product you are taking. In Australia and New Zealand currently, two major products are available medicinally; one standardised to have high levels of CBD and virtually no THC, and another which is a balanced ratio of both CBD and THC. CBD dominant products are unlikely to cause any intoxicating effects and are probably best known for being of benefit in patients with epilepsy, but under the guidance and supervision of a medical practitioner well-versed in prescribing medicinal cannabis, you should not necessarily feel high using THC dominant products either. An important point here is not to demonise THC, as it is medically useful particularly when pain management is concerned, and many women I have spoken to who use balanced products with both THC and CBD report not experiencing any high after getting their dosage titrated correctly in conjunction with their medical doctor.
The majority of products on the Australian and New Zealand market are oral products, either in an oil that is measured out and swallowed or as a capsule. When using cannabis orally like this, it has a longer onset to take effect (anywhere between 30-120 minutes) depending on the individual patient, but it also has a longer duration of effect, lasting anywhere between 4-8 hours. When cannabis is smoked or vaporised, which is rarely prescribed medically, it has a much faster onset of effect (usually under 5 minutes), but has a shorter duration of effect of between 2-4 hours. Your medical doctor will have the best idea of which dosage form is best for you and your presenting symptoms.
This is an important question and one commonly asked by women in our research focus groups. Studies on illicit cannabis do demonstrate that cannabis has an addictive potential, but it is much lower than other legal drugs such as tobacco or alcohol. Studies on the addictive potential of medicinal cannabis prescribed by a medical doctor are lacking, but based on the constituent profile should still be considered a possibility. Should this be a concern of yours, ensure to discuss this with your prescribing medical doctor who will be able to monitor for this as part of any ongoing management plan with medicinal cannabis.
March 2020, Responses from: Dr Susan Evans
An injection of Botulinum Toxin is a good short term treatment option for pain that comes from pelvic muscles. Pain from the pelvic floor muscles can cause vaginismus, central lower abdominal pain, pain opening the bowels, difficulty emptying the bladder, or a stabbing feeling up the vagina or bowel. The pain may also be from muscles called Obturator Internus that lie on the inside of the hips. Pain in these muscles usually causes a sharp, sometimes stabbing feeling on the sides of the lower abdomen that can go to the back, sometimes goes down the front of the leg, makes it difficult to move or walk, improves with a heat pack, can go to the back and is affected by movement. Your doctor will examine your muscles with one finger to decide which muscles are affected and which muscles need the botox. Remember to ask them whether which muscles they will be treating with the botox.
Botox is best offered to women with pelvic muscle pain, where other pains have already been sorted out and the major pain remaining is pelvic muscle pain. This means that period pain, bladder pain, and bowel pain have already been managed. It won’t work as well if other pains, like continued regular painful periods aren’t managed first. If all goes well, botox injections can reduce pain for 3-6 months. This should be used as an opportunity to make long lasting changes to the underlying pain problem. For example, it is a good time to go off opioid medications, become more physically active, or work with a pelvic physiotherapist. If you can make these changes while the botox is active, then your pelvic muscle pain is less likely to return once the botox wears off.
There is more information on pelvic muscle pain, stretches to help loosen those muscles (free), and a downloadable pelvic muscle relaxation audio file ($22AUS) to help you at www.pelvicpain.org.au
February 2020, Responses from: Lara Briden
Yes, there’s a connection between endometriosis and bowel problems.
For one thing, both endo and IBS can present with similar symptoms such as bloating, abdominal cramping, nausea, diarrhoea, and pain with bowel motions. This overlap in symptoms can make it challenging to find the right diagnosis so be sure to alert your doctor to symptoms that are more endo-specific such as pain with sex, pain referred to the back, or a family member with endometriosis.
It is also quite common to have your situation of both endo and IBS. In fact, bowel symptoms are known to occur in up to 90 percent (1) of women with endometriosis and are generally attributed to either the presence of lesions on the bowel or to heightened pain sensitivity in the pelvis and abdomen, which is called visceral hypersensitivity.
There is also the intriguing possibility that gut problems may contribute, at least in part, to the disease process of endometriosis. That’s according to new research which has linked endometriosis to an imbalance of gut bacteria. (2)
The good thing about the link between endo and IBS is that you might be able to reduce endo symptoms simply by treating your gut problems. The best-known treatment for IBS is the low-FODMAP diet, which is the avoidance of fermentable carbohydrates found in dairy, wheat, legumes, and certain fruits and vegetables. Low-FODMAP is widely prescribed for IBS and has also been found to be helpful for endometriosis. (3)
Similar to the low-FODMAP diet is the strategy of avoiding gluten (a protein found in wheat, rye, and barley) and A1 casein (a protein found in normal cow’s milk). Both gluten and A1 casein (4) can cause digestive problems and avoiding them can help to reduce the symptoms of both IBS and endometriosis in some people. (5,6)
There’s no one-size-fits-all nutritional approach to endometriosis but understanding the link between endo and gut problems could help you discover which IBS treatments are also helpful for your endo pain.
In addition to a low-FODMAP diet, other possibles treatments for IBS include:
Hopefully, future research will clarify the relationship between endometriosis and IBS and bring new treatments to light.
For more tips about IBS and endo, visit the ENZ nutrition page.
January 2020, Responses from: Anna Fenton
There is very little data about age at menopause for women with endometriosis. If there has been a need for surgery to remove deposits of endometriosis from the ovaries this can affect ovary function and lead to an earlier menopause. If both ovaries are removed then menopause occurs at the time of surgery.
Research over the past 30 years, including some from Auckland, has shown that a hysterectomy alone, without removing an ovary is associated with a menopause that is on average 3-4 yrs earlier than average. Part of the blood supply to the ovaries can be affected by the hysterectomy. We see more rapid declines in the AMH level after a hysterectomy and this hormone reflects the ovarian reserve of eggs.
Sometimes symptoms can persist after menopause because we still see small amounts of estrogen being produced. In overweight or obese women the fat cells make significant amounts of estrogen and that production is not altered by menopause. This small ongoing exposure to estrogen after menopause can still stimulate endometriosis activity. This can be managed with pain killers or with some of the same treatments used before menopause.
There may also be pain related to adhesions or scar tissue, things that are not influenced by hormones, that persist after menopause.
In women taking hormone therapy to deal with menopausal symptoms such as hot flushes there may be some reactivation of endometriosis. In some situations, particularly if the endometriosis has affected the bowel, we would add a progestogen to the estrogen to prevent or minimise this.
November 2019, Responses from: Chris Boon
Contact Andrea, General Manager, at Adelphi Insurance Brokers at firstname.lastname@example.org She will look at your personal circumstances and help you put in place a health insurance policy that will cover many (but not all) pre-existing medical conditions. Endometriosis, pelvic pain and most gynaecological conditions are covered after 3 years. If these conditions are not pre-existing, then they are covered from day one.
The New Zealand Public Health System is one the finest in the world when it comes to acute situations like heart attacks, car crashes, broken legs etc. but struggles to cope with the volume of ‘elective procedures’, hence the long waiting lists. An ‘elective procedure’ is a procedure you have decided to have, in consultation with your specialist. Endometriosis and other gynaecological procedures are classified as ‘elective’ not ‘acute’. These conditions have a profound effect on someone’s quality of life but because they aren’t considered life threatening aren’t given the priority they deserve. You could wait months or years to have surgery which can seriously affect your quality of life. Health insurance gives you immediate access to treatment when and where you want it and covers, the often expensive, costs involved. In effect you book a hospital bed when and where you want it. One further point I believe it is very important to insure your children, full stop, but doubly important to insure your daughters, before any symptoms appear, that way they don’t need to deal with pre-existing conditions.
The short answer is everything. Depending upon your health insurance policy you can have all cost including treatment and/or surgery covered. My recommendation is to have a policy that:
I would recommend you contact Andrea, General Manager, at Adelphi Insurance Brokers at email@example.com She will look at your personal circumstances and help you put in place a health insurance policy that fits your circumstances and needs. If you are already on the ideal health insurance policy for you she will let you know that too, giving you peace of mind.
Health Insurance Brokers do not represent a particular insurance company they work in the interest of the buyer to ensure you have the correct insurance policies for your individual circumstances and needs.
Endometriosis New Zealand are not in the business of insurance so we would like to thank Chris Boon, Managing Director of Adelphi Insurance Brokers for taking the time to answer our members questions about health insurance in New Zealand.
September 2019, Responses from: Dr VP Singh
VP Singh: Histamine is implicated in neuropathic pain particularly in bladder (Interstitial cystitis). I do use antihistamines for IC from time to time.
Here is an article –
The role of histamine in neurogenic inflammation. A C Rosa and R Fantozzi
The term ‘neurogenic inflammation’ has been adopted to describe the local release of inflammatory mediators, such as substance P and calcitonin gene-related peptide, from neurons. Once released, these neuropeptides induce the release of histamine from adjacent mast cells. In turn, histamine evokes the release of substance P and calcitonin gene-related peptide; thus, a bidirectional link between histamine and neuropeptides in neurogenic inflammation is established. The aim of this review is to summarize the most recent findings on the role of histamine in neurogenic inflammation, with particular regard to nociceptive pain, as well as neurogenic inflammation in the skin, airways and bladder.
August 2019, Responses from: Dr Alex Bartle
Dr Alex Bartle: The first thing to say is that any ‘external’ cause of insomnia (Children, partner snoring, illness, pain etc.) needs to be addressed whenever possible. The problem with chronic pain, of any sort, is that it is chronic and therefore there seems to be no end (unlike having a baby!!).So, there is not immediate or easy ‘fix’. However, many of the strategies that you have mentioned above will be helpful. Gentle exercise outside in the day, reducing screen time before bed, and finding some distracting activity – reading, drawing, playing guitar, playing a board game etc. will help to distract from the pain and help sleepiness. Relaxation therapies are also helpful, going to bed in as relaxed state as possible using mindfulness, self-hypnosis, prayer, yoga, Tai-Chi, whatever results in some relaxation. A warm, even hot bath can also help with relaxation, and enhance sleep, and a hot water bottle (with care) can be comforting on your tummy.
ENZ Response: Just like a proper diet and regular exercise, a good night’s sleep is vital. You can find more information about sleeping well on our endo management page. We also suggest you read through the information about fatigue (pg. 13) and chronic pain (pg.17 & 18) in the free free downloadable e-book on our website
June 2019, Responses from: Dr Nick Bedford
Nick Bedford: It sounds like there could be a couple of things going on. If you are not having periods while you are breast feeding, the ovaries won’t be making much estrogen at all. That can give symptoms a bit like menopause, which can include vaginal burning, and bladder symptoms! So something to try is some vaginal estrogen cream 2x/week from your GP. The body only absorbs a small amount and it doesn’t interfere with milk production. You can keep using this until your natural period starts.
The Noriday MIGHT make the burning a little worse if it is due to low levels of estrogen hormone but usually doesn’t make too much difference. If you need contraception it would be a good option. You could use the estrogen cream as well anyway. The estrogen cream is not a contraceptive.
The other thing to check out is what is actually happening with your pelvic floor, with a review with a specialist pelvic floor physiotherapist. Although you may think your pelvic floor muscles are weak or damaged after childbirth, the reverse might be true – you might actually have quite tight muscles, which can’t work properly when you want them to. That can cause the burning sensation you describe, and usually responds well to trained pelvic floor physio input.
ENZ Response: We suggest you read through the bladder information (pg. 10 and 11) in the free downloadable e-book on our website to gather some more information to help yourself. Endometriosis and Pelvic Pain by Dr Susan Evans and Deborah Bush also has information about bladder first aid and bladder pain. https://nzendo.org.nz/resources/
The Pelvic Pain Foundation of Australia has a wonderful page describing bladder pain, possible causes, self-management and when to seek further advice. https://www.pelvicpain.org.au/bladder-pain/
May 2019, Responses from: Leena St Martin and Anna Ponnampalam
Leena St Martin: Tiredness is very common among women with endometriosis and chronic pelvic pain. A blood test is just a starting point for broader assessment of this troubling symptom. Background health issues need to be identified (e.g. past history of glandular fever and other illness affecting the family such as pernicious anaemia). Diet, exercise, and lifestyle should be addressed along with psychological aspects. There is a plenty of good information about helpful nutrition to ensure both body and brain are being replenished at an effective level.
Fatigue may be part of a depressive disorder which very often goes hand in hand with chronic pain. Having to withdraw from normal life due to pain symptoms over a long period of time makes it even more effortful to participate even if the mind is willing. Depression affects concentration and energy levels so this needs thorough assessment. Antidepressant medication can help
Fatigue may arise from poor sleep patterns (insomnia, hypersomnia or a sleep disorder) whether caused by pain interference, depression, or other factors. Sleep problems can also arise from poor eating patterns, digestive disturbance, environmental impact, so this all needs to be assessed.
It may be a result of faulty breathing patterns and/or absence of exposure to fresh air and sunshine
Fatigue may arise from inadequate physical movement which is common for people immobilised by pain over a long time. Loss of muscle tone contributes to lethargy and a sense of heaviness with movement.
Conversely, fatigue may arise from a boom/bust pattern to activity as when symptoms are under control, we may overdo activity and pay the price later with fatigue
In summary, tiredness should be taken seriously and thoroughly assessed so a treatment plan can be instigated!
Anna Ponnampalam: Fatigue is an under recognised but very common symptom of endometriosis. Physical activity is known to reduce pain and could be beneficial in reducing tiredness – even gentle exercise can help. There are some very good ESIG comments and ideas about exercise written by other experts so check those files out as well.
Prescribing drugs to reduce fatigue in those with endometriosis is not common practice among clinicians yet.
Low iron can also be the cause of tiredness, so it would be worth asking your doctor about this. Iron tablets might have more iron per dose, than iron tonics. Moreover, conventional iron tablets usually have the highest iron absorption as well. Hence it is worth trying iron tablets.
ENZ comment: You may want to ask your doctor about the new iron infusion for low iron levels or where your test results are borderline. It has a much lower incidence of adverse side effects than iron pills or tonics (constipation, nausea and other stomach upsets).
Sometimes we forget to do the basic stuff like get enough sleep, to learn more about these things you can download the free e-book; https://nzendo.org.nz/resources/
Also read Ask ESIG files: Nutritional Supplements by Roberta Mek and Clarice Hebblethwaite
April 2019, Responses from: Sara Widdowson
Sara Widdowson: Bowel symptoms such as abdominal pain, bloating and fluctuation between constipation and diahorea are a common struggle for many women with Endometriosis. The gold standard dietary approach for identifying dietary triggers of such symptoms is to implement a FODMAP elimination diet for around 6 weeks with the guidance of a Dietitian. FODMAP foods are fermentable carbohydrate containing foods (read more about FODMAPS and Endometriosis here).
However, many FODMAP containing foods are valuable sources of plant proteins, essential to include for a nutritionally balanced Vegan diet. Foods such as legumes, pulses, high intake of nuts and some soy products would all be considered high FODMAP foods but also help provide Iron, Zinc, protein and Calcium. I would therefore discourage you from undergoing a low FODMAP diet to identify key triggers of some of your bowel symptoms. I would instead recommend focusing on reducing intake of common irritable bowel symptoms such as:
Here are some FODMAP free, Vegan meal ideas you might find helpful:
While it is possible to eat a nutritionally complete Vegan diet it does take careful planning, thought and consideration of key nutrients. Having bowel troubles and other factors such as your age, specific medications (such as Zoladex) and physical activity levels can make this more difficult and seeing a Dietitian for support with your specific needs would be beneficial for you. However here are some other key tips to consider when planning meals:
March 2019, Responses from: Susan Evans and Neil Johnson
Susan Evans: Thank you for asking regarding the possible effect of your daughter’s transgender hormones on endometriosis. This is an area that hasn’t been researched sufficiently to give you a definite answer. There are several things to consider.
Generally, if the testosterone increases AND the oestrogen decreases, it is possible that she may have less pain than before. We know from a study by Aloisi of male to female transgender hormonal transition (estrogen increases, testosterone decreases) found an increase in chronic pain conditions. I’m not aware of how this works when the transition is female to male (testosterone increases, estrogen decreases). It may be that your daughter’s pain improves.
However, testosterone converts to estrogen in certain tissues of the body including the uterus and endometriosis lesions. So, giving a woman testosterone, even if estrogen blood levels are low, can still be associated with a thickening of the endometrium of the uterus, and growth of endometriosis lesions, if any are still present , because the endometriosis lesion converts the testosterone to estrogen. So, if your daughter still has her uterus, she will need to ensure that the endometrium doesn’t thicken, possibly by having a mirena IUCD inserted. If she plans to have it removed, then this isn’t a concern. If she has endometriosis still present in her pelvis, then these may grow as the testosterone is converted to estrogen using an enzyme called aromatase in the lesion. A more complicated way of managing the endometriosis lesions is to give testosterone with a medication called an ‘Aromatase Inhibitor’ which stops testosterone being converted to estrogen in endometriosis lesions. Sorting out what is best for your daughter will depend on whether she plans to remove her uterus, whether she has had her endometriosis fully removed, and the nature of her pain. Review by an endocrinologist who understands endometriosis and hormonal therapies would be advisable.
Neil Johnson: Hormones with androgenic effects have long been used to treat endometriosis. One of the oldest medical treatments for endometriosis, danazol, was very effective, but its use has been severely curtailed by significant androgenising side effects. Endometriosis is vanishingly rare among men – and one of the reasons for this is believed to be the high levels of androgens typical for males. The short answer is that – for the reasons that you highlight – your daughter would likely experience a substantial beneficial affect in relation to resolution of symptoms related to endometriosis if she was to use masculinising hormone therapy to commence the transition to the male gender.
February 2019 , Responses from: Roberta Mek and Clarice Hebblethwaite
Roberta Mek: First, I’d like to know what endometriosis symptoms are contributing to your fatigue. In one study fatigue in endometriosis was associated with insomnia, depression, pain, and occupational stress.
As you see, a combination of conditions may be causing a fatigue. Unfortunately, one pill or a supplement will not solve it. We need to look into the whole picture. Dosing on extra vitamins and various supplements without advice of a healthcare professional is not a good idea. In some cases, it may be even harmful.
I’d advise starting with a visit to your GP for basic blood tests to check your blood count, hormone levels, thyroid function and if you are deficient in Iron, Vitamin D, Vitamins B, etc. While you are there, it’s a good idea to check your blood pressure. A low blood pressure may be an additional cause of the fatigue.
If your tests results will show deficiencies – specific vitamins and supplements may be recommended.
Please note, in New Zealand supplements are not regulated. A study by the Liggins Institue showed that some fish oils in New Zealand have been sold rancid. Most often a healthy varied diet is the best way to get nutrition into your body. Obviously, you need to choose a way of eating that works best for you. If you have IBS type symptoms, FODMAP diet may be beneficial. You may wish to consult a dietitian or a nutritionist who is specialising working with endometriosis patients.
Moderate or gentle exercise has been shown to help with a fatigue. If you haven’t exercised for a long time we recommend to start with a gentle 10-15 min. walk.
As acupuncturists, we often see women fatigued from a combination of endometriosis symptoms. Women often can’t sleep because of the pain at night. Of course, when you are tired you will feel pain more acutely during the day as well. Acupuncture may help with a fatigue by elevating a combination of endometriosis symptoms. It has been shown simultaneously to reduce endometriosis-related pain, anxiety, elevate depression and improve sleep.
Clarice Hebblethwaite: In my experience fatigue is really common for many women with endometriosis but there is no one solution that works for all. The key is to work on identifying the cause of low energy; Is fatigue due to low iron, Vitamin B12 or Folic acid levels? It may be the blood sugar levels are not even and steady or hormone levels are not ideal within the thyroid gland. Other reasons can be insufficient sleep or high stress levels and demands in life. Living with pain can also be very exhausting. The eating pattern and a low vegetable content may not be providing sufficient energy between meals. Or quite possibly an undiagnosed food intolerance is also contributing to low energy and often what people describe as ‘brain fog’. And dehydration can also lead to tiredness.
So once the possible causes clearer, then suggestions for treatments including nutrition can be made including vitamin or mineral supplements that may be taken for a certain time.
January 2019, Responses from: Michael East, Neil Johnson & Simon McDowell
Michael East: Basically if you have a complaint of ‘menstrual distress’, and by that I mean debilitating periods that cause you to loose time from school or work, then there is a high chance that you will be suffering from endometriosis. Most women with endometriosis at your age will have stage 1 disease and the use of a progesterone pill as opposed to a standard combined oral contraceptive pill may be a reasonable treatment to try. You do not have to do anything you don’t wish to however as your body is yours only. Always make sure you have a support person with you during consultations as it is easy to feel overwhelmed by the whole process.
Neil Johnson: There’s no requirement to take the combined oral contraceptive pill (OCP) before being referred for a specialist opinion. The OCP may be unsuitable for some young women for a variety of reasons. However the pill will often help to resolve symptoms of endometriosis and in some cases – but undoubtedly not all cases – may prevent (or at least postpone) the progression of endometriosis. It’s always worth discussing the reasons behind a prescribed medication being unsuitable with your doctor. Ultimately it is generally your GP who will make a referral to the gynaecology department at the public hospital, so your doctor would need to be sure that all options (including progestin only pill, such as Cerazette, as we recognise that progestin therapy is sometimes more effective for treating endometriosis or suspected endometriosis) have been discussed, before making a specialist referral.
Simon McDowell: Young women with period pains will often have improvement of their pain with use of the oral contraceptive pill. For many reasons though, use of the pill may not be suitable. Some woman may simply not want to use a hormonal pill, that is ok. It would seem sensible to have a discussion with your doctor on why they think it is worth trying, and also the reasons why you may wish to avoid. Local DHBs may encourage general practitioners to try the pill first, and only refer if symptoms persist. Your GP may need to communicate to the local DHB why the pill is not suitable for you.
Michael East: I have similar concerns about the standard ‘combined oral contraceptive pill’ (COCP). I tend to advise a progesterone only contraceptive at a high enough dose to stop ovulation such as Cerezette or Depo Provera. In theory such may stop progression of endometriosis and allow you to avoid surgery. It can be difficult to access surgery through the public system as there are so many people waiting.
Neil Johnson: I’m not surprised you’re confused. We know that the pill (combined OCP) is an effective treatment for symptoms related to endometriosis for many women. However it does treat (or ‘cover up’) symptoms and we know that it sometimes doesn’t stop the progression of endometriosis. The decision whether to proceed with laparoscopic surgery to remove endometriosis (which, of course, is a minimally invasive surgical procedure and carries with it recognised complications, although in expert hands the risks are small and this can be very effective providing good follow-up care is provided, not to mention that it provides a definite diagnosis) versus continuing with medical treatment can be tricky. Although, if you’ve reached 24 years old and have all the symptoms for a considerable period of time, it might be time to discuss the pros and cons of surgery. Endometriosis is a disease that classically progresses to a woman’s mid twenties, then less so or not at all after that – although there are exceptions to this rule.
Simon McDowell: Women with suspected endometriosis will generally have more profound and severe symptoms, and early referral is a good idea. Hormonal treatment may remedy symptoms, and a progestogen based agent is recommended. It may not stop progression of disease, but if symptoms are controlled, surgical investigation may not be warranted. Long-term followup can be initiated, and then surgery discussed if symptoms worsen, or the patient-doctor team feel surgical investigation is then advised.
Good & effective communication is the key. It is great you are asking questions, and I advise continuing to engage with your doctor, or seek another primary practitioner if you feel this is not working for you.
Michael East: I would advise using Cerezette. It is a progesterone only contraceptive pill but as effective as standard combined contraceptive pills in preventing pregnancy. It is not full subsidised however and you would be looking at a cost of around $50 every 3 month script!
Neil Johnson: Laparoscopic ablation (or ‘burning it off’) is appropriate for certain types of endometriosis, especially endometriosis on the surface of the ovaries. We now recognise that laparoscopic excision (or ‘cutting it out’) is superior to ablation for most other forms of endometriosis. Post-surgery it’s often a good idea to take medical treatment to minimise the chance of endometriosis recurring. Any pill (combined OCP) will likely be effective in reducing the chance of endometriosis recurring. However we recognise that progestin hormone treatment has stronger evidence of treating endometriosis that the combined OCP and it seems logical that a progestin hormone environment’ in the body will minimise the chance of future problems. A really good progestin-only pill is Cerazette, which has good contraceptive action and also prevents ovulation as effectively as combined OCPs, although as it’s newer, it’s slightly more expensive than just taking a ‘funded pill’.
Simon McDowell: Evidence suggests a progestogen method is desirable here. Options include oral progestin therapy such as cerazette, a mirena, or depo provera injections. For some women a combined pill will be more suitable after balancing symptoms control, contraception needs and side effects of treatment. Long-term follow-up is recommended, and if symptoms worsen we would advise specialist review.
These questions are very common and we hope the responses from ESIG has helped. Endometriosis NZ is part of a group working with the Ministry of Health, GPs, Gynaecologists, Pain specialists and patients called the Task Force. One of the aspects the Task Force has considered is the use of the Pill in the management of endometriosis. Announcements about this should be available this year – we’ll be sure to keep you posted.
November 2018, Responses from: Hannah Blakely
Hannah Blakely: That’s a really important question. Endometriosis may affect couples not just the individual in a relationship – particularly in the context of intimacy and sex.
Some things to cope with this and consider are:
Communication and education are key; sometimes the person with endometriosis is the only one given information about pain associated with the condition and how this develops from disease progression or after some surgeries. When this occurs it can be painful during sex. Having a discussion with your partner about how endometriosis may ‘behave’ can be useful to reduce personalising the pain experience from, for example: ‘when we have sex you make me sore’… to … ‘sometimes when we have sex it hurts because of endometriosis’. Following examination and advice from your doctor, letting your partner know sex is not causing physical damage can be important as your partner may fear hurting you which can cause conflict and does little for desire and arousal.
Sometimes when our brain recognises repeated pain signals associated with fear and anxiety, outside of physical harm, it can continue to interpret future sexual interactions as dangerous thus increasing the intensity of the pain experienced. That means for some women when sex is painful due to endometriosis this is recorded by their brain. The next time painful sex occurs the brain remembers this and sends pain signals that are more intense. For these women the response to reduce and avoid pain is to avoid sex which can have an impact on their relationship. When sex is painful either partner may experience emotions such as anxiety, guilt, frustration and sadness.
Recognising these behaviours and emotional responses is important. Validating your partner by letting them know it’s difficult sometimes and is about endometriosis and not personalised to them can be useful to keep the channels of connectedness and communication open.
Psychological treatment can help with endometriosis education, pain management, anxiety and relationship communication together with medical specialists managing aspects through a multidisciplinary approach.
November 2018, Responses from: Heba Shaheed
Heba Shaheed from The Pelvic Expert: Women with endometriosis often experience many different forms of pain including period pain, pelvic pain, ovulation pain, painful sex, painful urination, pain with bowel movements, and nerve pain.
As a pelvic pain physiotherapist, I treat a lot of women with endometriosis. Endometriosis is a condition where the cells, similar to the cells that make up the lining of the uterus, exist in other places too. These cells can be found on the ovaries, the fallopian tubes, the bladder, the bowels, in the vaginal walls, on the pelvic ligaments inside the pelvis, in the Pouch of Douglas (which is the space between the uterus and the bowels) and even on the lungs and diaphragm too! These cells will behave just like the lining during the monthly cycle, except they have nowhere to go, so they build up and cause inflammation and pain.
Because women with endometriosis often spend a lot of time in pain, often curled up in bed, the muscles and connective in their pelvis, abdomen, back and hips can become tight and sore as well. It’s important to keep the body moving to allow the muscles and connective tissue to lengthen, and to allow the nerves to slide and glide freely within the tissues.
Here are a few simple exercises I recommend for women with endometriosis to do at home:
Don’t underestimate the incredible benefits of taking a deep wide breath into your diaphragm. Deep breathing helps to allow for the ribs to expand, easing tension in the back, right up to the neck, and down into the pelvis. Often women with pain will take shallow breaths into their upper chest so their diaphragm doesn’t really get a stretch. The diaphragmatic breath calms the nervous system, which leads to less pain. You can do deep, wide breathing anywhere, but I like to have a yoga strap or band around my lower ribcage, so I can get that feedback of my breath into the band. I suggest taking 5–10 deep wide breaths every hour.
Very often women with endometriosis and pelvic pain actually have a tight and tense pelvic floor, so I recommend reverse kegels or pelvic floor relaxation exercises. We want to lengthen and relax the pelvic floor, especially with women who have pain with sex. Imagine the way a pebble drops into a pond, and imagine the ripples it makes outwards. Visualise this in your pelvic floor, and feel the way the pelvic floor muscles let go. Another image is visualizing your pelvic floor as an elevator in a 3 story building, then imagining the elevator at the roof coming down to ground floor and the elevator doors opening. You can combine this with your diaphragmatic breath and as you breathe in feel the elevator dropping to ground floor, and to get more relaxation, as you breathe out, feel the elevator coming down to the basement. Again try to do 5–10 breaths combined with pelvic floor drops every hour.
This is a really great simple hip opening stretch that also allows your buttocks and deep hip rotators to stretch. Simply lay back on your mat or on your bed with your knees bent, then take one ankle onto the opposite knee and use your hand to gently press away at the knee. Because a lot of women with endometriosis and pelvic pain often curl up in pain, we really want to open the hips, but in a gentle way. Hold this stretch for 60 seconds or as long as your feel comfortable and repeat daily.
This is another effective hip opening stretch that also lengthens the pelvic floor and allows the tailbone to soften away from the hips. You can do this laying back on your mat or in bed. Slowly bring both knees up towards your chest, and then when you are comfortable, slowly take the knees apart towards your shoulders. You can rest here for 60 seconds, and focus on your deep breathing and pelvic floor drops.
I love this yoga variation of the hip flexor stretch because you get a lot of lengthening of the muscles and connective tissue along the front of the body. The front of the hips, the pelvis, the belly and the chest all get a deep stretch. Start in kneeling on your knees on a mat (you can have a towel or blanket under your knee), then take a step forwards with one foot. Rest here for a moment before starting to bring bot arms up towards the ceiling. Rest here again and start to lunge forwards and lift your belly to the ceiling. Take a slow deep breath as you move from each position, but only go to a place where you are comfortable. Hold this stretch for 60 seconds as your breathe deeply and feel your pelvic floor melting down.
Finish off with a shell stretch by sitting back on your heels and curling forwards bringing your forehead to the mat. Reach your arms forward on the mat. If you feel comfortable, you can even take your knees out into a child pose stretch. This is a really great restorative pose that allows you to expand into your diaphragm more as your breathe in, and also lengthens the pelvic floor. Spend some time here whilst you breathe and visualize your pelvic floor muscles softening down, as your chest and breastbone also melt to the mat.
July 2018, Responses from: Professor Neil Johnson and Michael East
Neil Johnson: Painfully under-researched, poorly understood, often unrecognised, what is adenomyosis?
Adenomyosis is probably associated with fertility problems in some women, but this is again likely to respond to the same fertility treatments as endometriosis, indeed a lot of my patients with adenomyosis have had success with lipiodol, as has been proven to be the case for women with endometriosis-related infertility.
Laparoscopic surgery can sometimes help with adenomyosis, but realistically all adenomyosis can’t usually be removed without a hysterectomy. Having said that, not all women with adenomyosis will ultimately need a hysterectomy. It can often be managed, even long term, with some of the medical treatments for endometriosis and one treatment that I have found to be particularly useful for many of my patients with adenomyosis is the Mirena intrauterine system (as it releases progestin hormone locally to precisely where it is needed in the case of adenomyosis).
Internationally, there is now growing recognition that much more research is needed.
Michael East: “Although adenomyosis is a term generally reserved for endometriosis like deposits found within the wall of the uterus, similar ‘lesions’ can be found in other places (see below). The term adenomyosis contains 3 parts, adeno (meaning glandular tissue, in this case similar to endometrial tissue), myo (meaning smooth muscle) and sis (coming from the Greek ending to indicate ‘a condition’). The uterosacral ligaments that run from the cervix to the lower spine (sacrum) can also contain adenomyosis like tissue, as can the rectovaginal septum (wall between the rectum and vagina). Both of these structures contain smooth muscle and both can have endometriosis (known in these places as adenomyosis) within them, that can survive after hysterectomy. If it is suspected at the time of hysterectomy that the uterosacral ligaments and rectovaginal septum contain adenomyosis / endometriosis, then it is usual for the surgeon to try to remove that as well. It is still possible for some to survive even then after hysterectomy, and cause ongoing pain. I would like to stress however that pelvic pain persisting after hysterectomy is more likely to be due to other causes than adenomyosis (for example musculoskeletal pain). Ongoing pain is best helped by a team of health professionals consisting of a physiotherapist, gynaecologist, chronic pain specialist and a clinical psychologist.
Sometimes further surgery can help, but equally it may fail or even make the pain problem worse! It is important to remember that every woman’s situation is slightly different and what may have helped a friend may not be the best option to help you. Talking about your options with the health team members mentioned above is often the next best step.”
Michael East: “How adenomyosis occurs is still an unanswered question. The suggestion that pregnancy causes adenomyosis is probably a medical myth (other that after C-section which I will come to later). Before ultrasound scans had been invented adenomyosis was only diagnosed in women who had undergone hysterectomy and the majority of those had borne children. Even when ultrasound scans became available the appearance on scan thought to indicate adenomyosis, was only seen in older women. Now that ultrasound scans offer much higher definition the appearance of adenomyosis can be seen as early as age 14 years. It is important to remember that adenomyosis can’t be diagnosed by an ultrasound scan or even an MRI scan. It can only be suggested by such scans, as tissue under a microscope is the only sure way to make the diagnosis. “To answer the question above more specifically however, I am not aware of any good evidence that adenomyosis becomes worse after a pregnancy. The exception to that is in the case of C-section where the very cut into the wall of the uterus may become a site of adenomyosis due to faulty healing where the womb lining can become caught up within the wall of the uterus. This is one of the reasons why women who have experienced a C-section delivery are at greater risk of having a hysterectomy in later life.”
Neil Johnson: “Adenomyosis should not return after a hysterectomy (as long as it wasn’t a subtotal hysterectomy and the cervix has also been surgically removed). Endometriosis associated with it can occasionally return after hysterectomy and oophorectomy … unfortunately.
“Data are very sparse on whether adenomyosis gets worse soon after pregnancy and even more sparse than the sparse data indication on the length of time for recurrence of endometriosis and related problems after pregnancy. Adenomyosis remains much less well researched than endometriosis. We can often apply the same lessons that we learn from endometriosis research to adenomyosis (in fact we often have to, otherwise there is an information vacuum regarding adenomyosis). It is largely based on experience/anecdote rather than primary research data, but this experience tells us that endometriosis (an adenomyosis) problems often resolve during pregnancy and for a variable time afterwards. In fact, there are some women whose endometriosis/adenomyosis-related problems do not recur after pregnancy. Unfortunately, there are also many women whose problems do recur, sometimes a short time (months) or a long time (up to many years) after having a baby. The length of time that women remain free from endometriosis problems after pregnancy is unpredictable. Having a caesarean section, rather than a vaginal delivery, has sometimes been claimed to be associated with earlier recurrence or more likely occurrence of endometriosis (www.hormonesmatter.com/endometriosis-vaginal-birth/). Probably the strongest study in the literature to support this was a Swedish cohort study (ref: Andolf E, Thorsell M, Kallen K. Caesarean section and risk for endometriosis: a prospective cohort study of Swedish registries. BJOG. May 13, 2013. doi: 10.1111/1471-0528.12236.)
Mr Michael East and Professor Neil Johnson have given a helpful response to these questions. ENZ recommends the gold standard approach to managing pelvic pain through multidisciplinary teams at Centres of Expertise. If such a centre or clinic is not available near you, look at the ASK ESIG files about pain management and ask your GP or specialist about a referral.
June 2018, Responses from: Leanne Wait
Do you know of any exercises to help with my endo pain?
Pelvic floor release exercise – STOP, DROP & FLOP
With persistent pain like that experienced with endometriosis often comes a whole-body response where the nervous system becomes sensitive and certain muscles groups may become overactive as a type of protection. The pelvic floor is one such group. Commonly when I assess I find the pelvic floor muscles are tight, sore and they can be hard to release and relax.
When the pelvic floor is overactive doing pelvic floor strengthening usually compounds the problem making it tighter and sorer. Instead you may need to do the reverse which is like a reverse pelvic floor or kegal exercise. Can you release and lengthen your pelvic floor?
This can be a little tricky to master but the way I find most people understand it best is to talk about wind – (aka farting ;)).
Let’s try the Reverse Pelvic Floor which I call STOP, DROP & FLOP
If you are unsure a pelvic health physio can help you to know if your pelvic floor is overactive and how to release.
May 2018, Responses from: Heba Shaheed
What are some suggested exercises for someone with endometriosis?
Endometriosis in women and girls is often accompanied by pain and discomfort in the pelvic region. The muscles and connective tissue in the pelvis, abdomen, back, hips and legs can become tight and sore. It’s important to keep the body moving to allow the muscles and connective tissue to lengthen, and to allow the nerves to slide and glide freely within the tissues.
Here are a few exercises that can be helpful to relieve the pain:
1. Pelvic floor drops:
Tension in the pelvic floor is common in women with endometriosis and pelvic pain. Pelvic floor drop exercises are essential to lengthen and relax the pelvic floor, especially with women who have pain with sex. Imagine the way a pebble drops into a pond, and imagine the ripples it makes outwards. Visualise this in your pelvic floor, and feel the way the pelvic floor muscles let go.
The following restorative yoga stretches are also beneficial. Spend some time in each of these poses whilst you breathe in deep and wide, and visualize your pelvic floor muscles softening down. You can complete the stretches in the following order.
Modified pigeon pose:
Downward-facing dog pose:
Child pose stretch:
June 2018, Responses from: Courtney Hibberd
“I know about FODMAPs and have tried reducing some of the foods that irritate my gut but there’s a lot of stuff on anti-inflammatory diets lately. Like we shouldn’t eat foods that inflame the gut. Seriously, what’s that about?”
“In terms of managing functional gut symptoms that can run alongside endometriosis, a low FODMAP diet is still one of the most effective dietary interventions we can do.
It is important to note, that a low FODMAP diet is designed to be short-term (~6 weeks) and then a re-challenge is done. This helps to identify which of the four FODMAP groups you are most sensitive to and which groups you can liberate. The ultimate aim is a really varied diet, with only a few restricted foods to maintain good symptom control. It is an elimination diet, so seeing a FODMAPs experienced dietitian can really help make the diet easier to follow and ensure you are getting the best possible nutrition.
Including foods that naturally contain anti-inflammatory properties can easily be done on or off a low FODMAP diet.
Including foods such as walnuts, oily fish (salmon, sardines etc), linseeds (in small quantities as are high FODMAP) or flaxseed oil, leafy greens e.g. spinach, extra virgin olive oil and fruits such as blueberries, strawberries, oranges etc is a good place to start.
Fruits and vegetables such as leafy greens and blueberries are high in antioxidants and polyphenols-which are protective components found in plants, and foods such as walnuts and oily fish contain omega 3 fatty acids which also have anti-inflammatory properties.
If you are looking to overhaul your diet, a good place to start is by aiming for a more Mediterranean style of eating. This involves including higher intakes of fruit and vegetables (aiming for 5-7 serves per day – e.g. 1 cup salad veg or ½ cup cooked veg and a small palm-sized piece of fruit (no more than 2 serves/day)), extra virgin olive oil, nuts and seeds (~1/8th of a cup), a couple of serves of fish/week, decreasing red meat (<2x serves/week) and processed meats and including whole grains.
This style of eating can easily be combined with a low FODMAP diet for maximum gut benefits!”
December 2017, Responses from: Susan Evans and Neil Johnson
QUESTION 1: How does the Zoladex injection affect my period? For instance, I thought it would stop my periods but that hasn’t happened.
Neil Johnson: It can sometimes take a cycle or two for Zoladex – which is a GnRH agonist and works by switching off the pituitary gland releasing the hormonal drive to the ovaries – to stop menstrual bleeding, although most women’s periods have stopped by the second cycle of treatment.
QUESTION 2: My doctor has suggested I start a course of Zoladex but from what I have read, it’s a pretty gross drug with awful side effects. Wouldn’t it be better to excise my endometriosis properly as I have only had a diagnostic laparoscopy?
Neil Johnson: Zoladex does have potential side effects, including hot flushes, sweating episodes, vaginal dryness and mood swings or low mood, and if used longer term also loss of bone mass – in other words, menopause-type side effects – but some women experience little in the way of side effects. When given to treat pain symptoms, Zoladex is usually administered with add-back hormone therapy, usually involving estrogen and progestin hormone, which means that most women will not have any Zoladex-related side effects. When given to assist fertility outcomes, such as in the lead in to IVF, Zoladex is usually given without add-back hormone therapy, but the duration of the treatment course is usually short, typically only three months.
QUESTION 3: Is Zoladex the same as that horrible drug Lupron that they talk about in the U.S.?
Neil Johnson: Both Zoladex and Lupron are GnRH (gonadotrophin releasing hormone) agonists (or analogues). However both, if used properly as described in reponse to query (b), in most cases, neither tends to be horrible. They can both have side effects, but even if this is the case, often this is quite manageable. If not, then there are other treatment options.
General comment about the three previous questions
Susan Evans: Yes, Zoladex only suits some people, and it can’t be used long term.
Actually it isn’t any more effective than continuous progestogen hormones.
I’d recommend dienogest (Visanne) 2mg daily every day without breaks, or if it isn’t available then norethisterone (primolut) 5mg instead
FURTHER INFORMATION FROM ENZ:
ENZ does not give advice on any medical therapies or drugs to treat endometriosis. There are no drugs which cure endometriosis but women often find their symptoms are controlled or improve taking certain drugs. Our recommendation is that you research the drugs being recommended to you. Ask your doctor why that particular drug is being recommended and the options available. Any treatment you are offered is about YOUR INFORMED CONSENT.
July 2017, Responses from: Hannah Blakely
QUESTION 1: I have read the ASK ESIG files on pain following surgery (click here to view) but seriously, with a history of endometriosis and adenomyosis, what can I do to ease the ongoing pain?
Hannah Blakely: A team approach to pain management is the most effective in response to this question. A Clinical Psychologist may be useful to approach management of chronic pelvic pain in the context of ongoing management of pelvic pain. For example, many women experience persistent pelvic pain when the assumed source or reason for pain is surgically removed or medically managed. Often women express their distress, frustration and anxiety that pain remains feeling ‘over it’ and describe how it may negatively impact on their daily functioning. It may impact on mood, (low mood/depression and/or anxiety tolerance of pain, concentration and attention, physical activity, relationships sexual intimacy.
A common question is ‘how do I cope with living with this pain’. There are a number of effective management approaches including gaining the skills to tolerate and “turn the intensity of pain down”, finding out more about the psychological process of pain and how pain operates and learning about the meaning of pain to you. People perceive their pain differently. Some might think of it as harmful, unpredictable and uncontrollable. So, the way we perceive pain can affect our response to it.
Some strategies that may help living with chronic pelvic pain are increasing components of self-compassion, managing worrying and distressing thoughts through mindfulness and shifting our focus of attention. Learning about behavioural strategies and physical movement is also helpful to reduce the fear of pain and getting into the habit of avoidance.
FURTHER INFORMATION FROM ENZ:
Leanne Wait has some great advice about pelvic physiotherapy which is another TOOL for managing pelvic pain and compliments Hannah’s recommendations. At Insideout Physiotherapy in Hawkes Bay, she works with women who have endometriosis, adenomyosis, persistent pelvic pain and pre and post-surgical pelvic pain click here
June 2017, Responses from: Michael East
QUESTION 1: I am 20 years old, have a diagnosis of endometriosis and have not had children. My gynecologist has suggested a Jaydess be placed at my next laparoscopy. Why a Jaydess and not a Mirena? I am confused. I have not had one of these
before. Please ASK ESIG for me. Thanks
Dr Michael East: Hi everyone, as a clinician who inserts a lot of Mirena intra uterine devices, I would like to share with you how it can help many women and also to point out how to recognise if it is not suiting you. Usually in my experience it is generally part of the solution and not part of the problem.
Firstly, let us consider what a Mirena consists of:
It is ‘T-shaped’ plastic (nylon) device that has a slow release hormone capsule attached to the ‘stalk’ of the T. It acts as a very efficient contraceptive and has a 5-year lifespan. What are its properties? The ‘T’ serves to hold the hormone capsule inside the cavity of the uterus. It is chemically inert but as a foreign body it can act as an irritant to the uterus causing the uterine muscle to contract and cramp more often. This is more likely to occur in teenagers as the uterus is smaller and the ‘fit’ a little tighter. For younger women, the smaller Jaydess may be a better choice.
The hormone is a copy of the female hormone progesterone, and has two main actions:
Generally, the hormone effect tends to dominate over the foreign body effect, and if that is so, then a Mirena tends to produce benefit to the user. If the foreign body effect is dominant, then cramps and bleeding can aggravate endometriosis symptoms.
The amount of hormone that leaks into the rest of a woman’s body is equivalent to taking one progesterone only contraceptive pill per week. As a result, most women do not experience hormone related side effects. Some women however are sensitive to this small hormone leak and experience a deterioration of acne or a flatness of mood. Some women find that their cyclical mood swings get worse, while others notice no difference or improvement.
Who do I advise to have a Mirena placed?
Most women undergoing surgery for endometriosis in my experience, benefit from having a Mirena placed at the time of surgery while they are asleep. They should be warned that it takes at least three months to ‘settle in’ and breakthrough bleeding can be an issue during this time, along with cramping. In other words, they need to ‘cut it some slack’ during that time. It tends to eventually add to the effectiveness of surgery and there is growing evidence that it decreases the number of women needing repeat operations for recurrent endo symptoms.
Who do I advise to avoid a Mirena?
Obviously if you are trying to become pregnant it is a no brainer. The main group of women that I suggest do not to have a Mirena are those who have a diagnosis of ‘polycystic ovary syndrome’ (PCOS), as it tends to aggravate acne or abnormal body and facial hair growth.
It a Mirena right for you?
The only real way to know is to try one and see.
This is made by the same company that makes the Mirena and is smaller in ALL dimensions. It is basically a ‘honey I’ve shrunk the Mirena’ option and lasts for 3 years. It’s smaller in size means that it is less likely to cause painful cramps in younger women with a smaller uterus and it better fits inside a smaller uterine cavity.
Otherwise it does the same job as a Mirena.
I could write so much more however I was instructed to be brief!
April 2017, Responses from: Cate Grace and Leanne Wait
QUESTION 1: Can you exercise without provoking or triggering more pain and symptoms?
Cate Grace: Absolutely! The research tells us that exercise can often help reduce pain and improve your quality of life but often because we are in pain, there’s a temptation to skip exercising. Everyone can do something, we just have to be mindful that exercising with pain is a fine balance, between doing too much and not doing enough.
Set out to discover what exercise you can do by discovering movement and activities you enjoy and can do without increasing your pain by more than two points from your baseline. It may look different than you knew before, maybe its walking instead of running, swimming instead of cycling, aqua class instead of hip hop. The possibilities are endless.
Seeking advice from physiotherapist or a registered exercise professional who understands chronic pain can assist in working out varied solutions and specific plans that work with your pain, and current levels of functioning. All the best and remember to keep in the back of your mind the benefits of exercising and aim for activities you enjoy doing!
Leanne Wait: Exercise has a well-established part to play in a management plan for anyone with persistent pain however there is a right type of exercise and amount for each individual. Too often patients are told to go and exercise so do too much or the wrong type of exercise which increases their pain and or symptoms and continues the cycle.
Current pain science tells us that for anyone experiencing pain for 3 months or more no matter what the cause will develop changes in their nervous system as the body tries to adapt, cope and protect us. This phenomenon is called “Central Sensitisation” and contributes to the complexity of persistent pain of any cause.
(See Leanne’s previous Ask ESIG answer for more information; How does pelvic floor physiotherapy actually help in women with Endometriosis, and what are the mechanics behind some of the muscular causes of pelvic pain that physios treat?)
If you have had pain for more than 3-6 months you should expect the increase in nerve signals to cause signs and symptoms to be worse with only minor triggers, last longer and things that would not normally cause pain will begin to trigger symptoms. If this is the case, then even simple small amounts of exercise can cause trigger pain and deterioration in symptoms. This in turn can lead to fear of movement as seemingly minimal exercise has previously triggered pain.
Exercise is an important part of any treatment plan as has many established benefits. Exercise can also help calm the nerves that are sensitised as long as the appropriate exercise, duration and intensity are chosen. Activity where there is a strong pelvic floor component like running, pilates, boot camp or core training in a gym are not usually helpful in anyone with pelvic pain due to in most cases overactivty in the pelvic floor. By working the pelvic floor more symptoms often increase – this could be noticed as bladder pain urgency or frequency, bowel pain, altered form of the bowel motion or bloating or increases in abdominal pain. Pain with intercourse or even pain with movement are also common when exercise has been overdone.
So the question is can you exercise without provoking or triggering more pain and symptoms?
The simple answer is yes! Where to start depends on how much you are currently able to move without provoking protective pain or symptom changes. Obviously, that means everyone is different. Sometimes we have to start with “graded motor imagery” where we imagine movement. Others can start with much more but either way the progression needs to be SLOW.
My experience is that any exercise needs to be individually tailored and graded which means a very slow gradual increase in activity with the focus on preventing flare ups and triggering an increase in symptoms. Sometimes my patients start with a 5-minute walk or 2 or 3 gentle yoga exercises prescribed to meet their individual needs. If they feel the benefits then after 3 trials we increase the intensity, load OR how long they exercise for. Understandably this can be very frustrating but is the way to your exercise or fitness long term goals. Fitness professionals not familiar with pelvic pain will be unaware of the potential to increase symptoms so inadvertently while trying to help often make the situation worse. It is therefore important to access pelvic health physios or fitness professionals familiar with this unique situation or even better work together to optimise individual client outcomes.
Contact Physiotherapy New Zealand http://physiotherapy.org.nz/about-us/contact-us/ to find an “Experienced Pelvic Health Physiotherapist” near you.
Nijs, J , Kosek, E, Van Oosterwijck, J, Meeus, M. (2012) Dysfunctional Endogenous Analgesia During Exercise in Patients With Chronic Pain: To Exercise or Not to Exercise? Pain Physician 15 (3 Suppl), ES205-ES213. 7 2012. http://www.painphysicianjournal.com/current/pdf?article=MTcxNw%3D%3D&journal=68
Nijs, J., Lluch Girbés, E., Lundberg, M., Malfliet, A. and Sterling, M. (2015). Exercise therapy for chronic musculoskeletal pain: Innovation by altering pain memories. Manual Therapy, [online] 20(1), pp.216-220.
Evans S. (2013) Managing chronic pain in girls and women. Medicine Today 14 (5): pp54-58. http://www.drsusanevans.com.au/managing-chronic-pelvic-pain-in-girls-and-women/
Vandyken, C., MDT, C. and Hilton, S. (2012). The Puzzle of Pelvic Pain. Journal of Womenʼs Health Physical Therapy, 36(1), pp.44-54.
FURTHER INFORMATION FROM ENZ:
Cate Grace and Leanne Wait have given an excellent overview about exercise and its importance to those with endometriosis and for general well-being. However, we understand that exercise that provokes symptoms should be avoided and Leanne gives a good explanation.
Mobility is important so gentle and regular exercise is best until symptoms settle.
April 2017, Responses from: Heba Shaheed
Lately I’ve been wondering about whether my sciatica could be related to my endometriosis, I first developed sciatic pain 3 years ago and it was initially triggered by intercourse and I went to the ER at the time only to be referred onto a spinal specialist. At the time, I could barely walk because the pain in my right hip was so bad and radiated all the way down to my foot and I had to use a walking stick for a few months. I’ve seen a spinal specialist, musculoskeletal specialist, physio and myofascial masseuse about it and have had MRI’s and the conclusion was that I didn’t have any spinal problems or muscular problems (such as disc bulges or piriformis muscle syndrome) that could be causing it. I was told that there was something wrong with my sciatic nerve and that the only thing I could do was to have the nerve burnt so it stopped sending pain signals. 7 months ago, I had my laparoscopy to diagnose stage 3 endo and lately Ive been wondering if my sciatica could be related? The pain in my right hip is chronic now and worsens significantly when I have my period, I know its rare but could it be extra pelvic endo? What is the best course of action to find out more about this as gynecologists seem to only want to treat the organs they are familiar with.
Heba Shaheed: There is a possibility that your sciatica is musculoskeletal driven by your pelvic floor and pelvic wall muscles. The sciatic nerve has a complicated pathway through your body – yes, it is partly spinal, however it also passes in a “loop-like” fashion through your pelvic floor and deep hip muscles.
The sciatic nerve is usually treated with myofascial release work EXTERNALLY at the level where it passes across the PIRIFORMIS muscle. However, in some women the sciatic nerve passes THROUGH the piriformis muscle. It is important to note that parts of the PIRIFORMIS muscle can only be myofascially released INTERNALLY through the vagina – so if you have only had external muscle releases, this is not enough. The sciatic nerve also passes across another internal muscle called the OBTURATOR INTERNUS. Very often women who have pain or spasm associated with sexual intercourse, the obturator internus and the pelvic floor muscles have likely gone into spasm or are tight and painful. The fact that you are complaining of HIP pain further indicates that your OBTURATOR INTERNUS is likely the culprit. Chronic hip pain has been shown through research studies to be directly related to obturator internus and many physios, massage therapists, doctors, etc will miss this important muscle because it is located INTERNALLY. You need to see a women’s health physiotherapist who specialises in pelvic pain and is skilled in internal myofascial releases.
The other thing is sometimes we can label any type of “nerve pain” as sciatica. But sometimes another nerve may be causing the pain e.g. the genitofemoral nerve or the obturator nerve or the pudendal nerve. It doesn’t really matter exactly which nerve it is but WHY the nerve is causing you pain i.e. what muscle is cramping around the nerve causing it to get overexcited and trigger pain signals. My advice: have the internal muscles investigated and released by a women’s health physio, attempt some basic hip and pelvic stretches such as child’s pose and buttock stretches, and try to relax down through your pelvic floor – imagine the way a pebble drops into a pond and the ripples it makes outwards and visualise that in your pelvic bowl. There is a possibility that it could be endometriosis though this is rare, so the best thing is to rule out the musculoskeletal system which is the more likely cause. All the best!
FURTHER INFORMATION FROM ENZ:
Heba’s response clearly outlines the possible cause of your pain. It is natural to think it is endometriosis causing the pain and further surgery is often performed, which can exacerbate the pain and cause further pelvic trauma. As well, the pain can be misdiagnosed as many will not consider the internal muscles. We know obturator internus can be an often-unforeseen culprit in causing pelvic pain. There is good information in the free downloadable eBook Pelvic Pain, on the ENZ website and there are chapters in the book ‘Endometriosis and Pelvic Pain’ available through ENZ. Dr Susan Evans treats many women with the kind of pain you describe and would recommend a multi-disciplinary approach to treatment including pelvic physiotherapy with someone who has the expertise. It is also a good idea to check whether you have had excision of your endometriosis by an advanced laparoscopic surgeon to rule out recurrent endometriosis. That done, other investigations should be explored and the best management applied. We can understand you being at your wits end with this persistent and challenging pain. We hope this helps and you access the care you need as soon as possible.
April 2017, Responses from: Clarice Hebblethwaite and Courtney Hibberd
QUESTION 1: It can be hard to balance diet between multiple health conditions. Any advice on how to balance healthy food choices so that the food intake doesn’t seem really restricted? I’d love some advice on how to eat with IC (interstitial cystitis), as I and others I know do struggle with it.
Clarice Hebblethwaite: Ideally when planning a diet all health issues are taken into account. There may well be food intolerances and in the case of Endometriosis this may be to some of the FODMAP group of foods. Alternatively in the case of Endometriosis and Interstitial cystitis there could be intolerances to Histamine rich foods.
The key is to only eliminate suspects for a trial period and then re test them to ensure as much variety of foods stays in the diet. There must be improvements in symptoms to warrant staying on any restriction and over time foods may be introduced again. We now believe that it is best to keep small amounts of poorly tolerated foods in the diet as a way of building tolerance. The exception to this is food allergies resulting in severe symptoms including anaphylaxis.
Ultimately I believe the burden of a severely restricted diet must not outweigh the benefits on symptoms. All too often people are on an ever reducing number of foods and the stress of this and depletions of nutrients can undermine the benefits on health.
Whenever we look at eliminating foods we must equally look at all the foods that can be eaten and the financial, social and emotional impact of having more flexibility on eating. We should also be addressing ways to overcome food intolerance.
For both conditions of Endometriosis and Interstitial cystitis I do recommend dietary changes are done with the guidance of a dietitian specialised in intolerances and allergies.
Courtney Hibberd: Managing multiple medical conditions can be tricky especially if there are concerns that diet may be contributing towards the symptoms.
But eating a wide and varied diet is one of the best ways to keep yourself (mentally) and your body (physically) in tip top condition.
Undertaking an elimination diet to try and identify foods that may trigger a symptom is best done under the guidance of an experienced allergy and food intolerance dietitian. They will provide you with the tools to identify whether food is contributing towards a flare of your interstitial cystitis and or endometriosis symptoms; and at the same time, ensure your diet remains nutritionally adequate and as varied as possible. Keeping to fresh foods and decreasing pre-packaged or processed foods can help manage your symptoms as well as make it easier to identify what might be triggering a flare.
As with a lot of food intolerances, they are often dose dependent – i.e. the more you eat of a particular food the worse the symptoms are likely to be. However, small amounts spread out over the day or week are likely to be well tolerated. This also helps to prevent over restricting the diet.
QUESTION 2: I struggle with the concept of everyone panicking that they have to completely cut out lots of food groups (as is advertised in the so-called Endo diet), so I would like some more info on what is important with Endo and what we should be focusing on dietary wise. Does everyone with Endometriosis need to eliminate things from their diet, or do some people not have symptom improvement through diet?
Clarice Hebblethwaite: It’s true there are so many dietary approaches and many contradict each other. It can seem more confusing than ever. So, what may work for one person does not always fit another and may change at different stages of life.
More than ever the diet needs to be tailored to the person individually. One person may have the most vitality and be in optimal health being Vegan and another person feel the same way on a Paleo inspired diet.
Regarding the Endo diet, this is picking up on the themes of other ‘anti- inflammatory’ diets in which certain foods are seen as anti -inflammatory or pro- inflammatory. When the body has higher levels of inflammation typically this can lead to higher levels of pain in conditions including Endometriosis.
Here I’ll address some of the key points of the ‘anti- inflammatory’ diets:
In the Question 1 I explain about whether there is a need to eliminate foods from the diet.
FURTHER INFORMATION FROM ENZ:
To our knowledge and research, there is no ‘endo diet’ but there are foods which typically irritate the bowel in those women with endometriosis who also have bowel symptoms (like IBS).
Endometriosis is now being seen as an inflammatory disease therefore food which help reduce inflammation may help with related symptoms.
There was much debate arising from the authors of the paper ‘Consensus on the Management of Endometriosis’ and considerable evidence based research on this and many other topics. From that research, there was no evidence to show that endometriosis is intrinsically linked to diet nor that everyone with endometriosis needs to eliminate foods or change their diet.
We all understand the benefits of good nutrition and a varied healthy diet. What we should acknowledge is the number of opportunists in this field – some well-meaning and others who recognised the enormous market potential. We must also remember what works for some may not be appropriate or even sensible for others.
Reliable, credible and current info on nutrition is on our website and there are excellent
chapters in the book ‘Endometriosis and Pelvic Pain’.
January 2017, Responses from: Charles Koh and Neil Johnson
QUESTION 1: (Summarised) Miss M (25yrs) Symptom onset in 2011 – 2016 – abnormal discharge, irregular bleeding, pelvic pain worsening symptoms over 5 years. Mirena placed. In Jan 2016 laparoscopy confirmed endo – ‘widespread but superficial’. Mirena left in place. Continues to experience discharge + bleeding. Pelvic pain improved. 10 days a month symptom free.
I need some advice! Is there anything that will help my irregularities and should I also have the Mirena removed.
Dr Charles Koh:
Charles asked the question: ‘was all the widespread ‘superficial’ endometriosis removed (excising) in an en bloc (all together) manner?’
It is the Mirena causing her irregular bleeding, unless she has a polyp which can be removed at the same time as removing the Mirena.
I suggest she considers asking her specialist gynaecologist whether a presacral neurectomy should be done if she undergoes further surgery to remove all the endometriosis.
Dr Neil Johnson: This is not at all an uncommon experience that Miss M has had.
The effect of the Mirena typically improves steadily to 6 months, sometimes taking up to 12 months before the full beneficial effect is seen. Improvements from Mirena after 12 months are rarely seen, so if there hasn’t been a satisfactory response (ie if the Mirena “hasn’t helped”) by 12 months, it’s unlikely that it will help. The Mirena works well for around 80% of women; not so well for up to 20% of women.
Of course, it’s possible that the Mirena may have moved or become dislodged, so it would be important to have the position of the Mirena checked- this can be done firstly by checking the length of the Mirena threads, but a transvaginal ultrasound is usually necessary to be confident about the Mirena siting. It would also be important to be confident that there were no organisms detectable that can be associated with pelvic infection – appropriate swabs by the doctor should exclude this.
Persistent irregular bleeding that are posing problems – once abnormal siting of the Mirena and infection have been excluded – would be reasonable justification to have the Mirena removed and for consideration for histology sampling of the endometrium (for example by Pipelle sampling). And sometimes simply removing the Mirena will resolve this problem.
It’s worth mentioning also that, even when the Mirena works well initially for endometriosis pain problems and bleeding problems, it doesn’t always last the typical five years for which the Mirena works effectively as a contraceptive. I commonly have to replace a Mirena after 3-5 years when my patients are using it to control endometriosis symptoms.
FURTHER INFORMATION FROM ENZ:
There’s a great ASK ESIG question about Mirena, which was answered by Mr Michael East, gynaecologist, Oxford Women’s Health Christchurch and Ascot Hospital Auckland. http://nzendo.dev/esig-ask-an-expert/mirena-or-jaydess/
September 2016, Responses from: Susan Evans and Simon Edmonds
I’m the mother of 16 year old Abby and I am desperate to know what to do about Abby’s bad periods. Abby has at least 2 days off school every month and is now having pains at other times. Her periods started at 12 and they have always been bad. I have a diagnosis of endometriosis which was a real battle to have treated and I still suffer. But to see my daughter now heading down the same path, is so upsetting. We have been to two GP’s and the story seems to be the same – take the pill and it will settle. Well, we’ve tried that for several years and her periods are regular but the pain and other symptoms are still bad. She tried taking the pill continuously and even when she’s not getting a period, she still has awful pain. She’s frightened about going to the toilet now because it hurts so badly. The doctor has said we probably won’t get into the health system and even if we do, nothing can be done and surgery never works. I’m sure Abby has endometriosis but I don’t know what to do. We don’t have health insurance and I can’t afford to see someone privately. I’d love you to help us by
PS. Abby hasn’t had a boyfriend yet and spends most of her time at home where she used to be a really outgoing and sporty girl. The doctor has put her on anti-depressants.
Dr Susan Evans:
Regarding Abby: for a start, this is what I would suggest:
For the muscle pain she will also have at this time:
For her parents:
Dr Simon Edmonds: It can often be very distressing for women who have been given a diagnosis of endometriosis, to then see their daughters go through some of the same problems with their periods and pelvic pain.
There is certainly a familial/genetic linkage with endometriosis, but this is not always the case. If Abby has tried the pill and also taken it continuously, without improvement in her pain, then referral to a gynaecologist would certainly be appropriate. There may be other causes for the continuous pain throughout the month and the gynaecologist will take a careful history and exclude these.
There is no ‘correct’ time to perform the 1st laparoscopy to try and diagnose or exclude endometriosis, but we try to explore more conservative options in younger girls as this often works.
If not, then laparoscopy at least gives an answer as to the way forward, but it would be unusual to see severe disease in this age group. Insertion of a mirena coil at the same time, is also another option as this can give better control of the periods. Improving diet and exercise regimes can also help in this age group.
If you do not have private cover, all public hospitals should offer this service and a least a consultation to discuss the way forward.
FURTHER INFORMATION FROM ENZ:
There’s a lot we don’t know about endometriosis but one thing we all agree on is – endometriosis starts early! Ignore it at our peril.
Abby’s pain is beginning to be experienced on other days of the month rather than only with her period which means that her pain is showing signs of becoming persistent with other challenging symptoms. Developing a persistent pelvic pain condition at the tender age of 16, must be taken seriously and managed effectively. Abby’s symptoms are now affecting her mentally and socially as well as physically and emotionally.
We urge you to contact ENZ and ask for one of our teenage menstrual diaries so that Abby can ‘keep a track’ of her symptoms. This is useful information to show your GP. You may be able to change your GP to someone who understands women’s health and pelvic pain, however we realise this is not always possible if lists are full and doctors are not taking new patients. If this is the case, return to your GP and ask for a referral to a gynaecologist who specialises in endometriosis. Take ENZ resources and her pain diary with you. The letter from the GP to the hospital must be quite specific and stress how Abby’s life, well-being and schooling are compromised because of her symptoms. If a generic letter is sent, the team who are responsible for triaging patients at the DHB, may not consider her symptoms to be bad enough for gynae review on a public waiting list. You can request to see a particular gynaecologist but it’s not always possible to have your choice granted. If its possible, you can see a gynaecologist with expertise in treating endometriosis privately (as a paying patient) and go on their public list which they can arrange for you. However, you need to make sure that the gynaecologist you see privately also works in the DHB as most are in private practice only.
Abby’s pain needs to be managed better, together with re-assessment of OCPs. With exercise, It’s always hard to ‘get off the couch’ when you’re feeling miserable and in pain, but we recommend a daily walking routine. Kirstie James (ENZ athlete) has some tips for exercise when you’re feeling totally unmotivated. Have Abby read Kirstie’s story here. See if the school can guide and help. There may be a social sports team Abby can join – through the school or a club. Abby is only 16 but she can take some responsibility for doing the things she can to feel better. There may be some help you can access for her around this and once again, the school will hopefully be able to advise. It would be a good idea to have an appointment with Abby’s school and in particular the Dean of her year group. Falling behind in her studies or assignments can put further pressure on her and the more behind she gets, the worse things can become generally.
Next step is to have a think about health insurance. There will be a stand down time for Abby as, even without a diagnosis, her symptoms would be considered a pre-existing condition. Adelphi Insurance ( http://www.adelphiinsurance.co.nz/ ) will be able to advise you about this at no charge and with no pressure to ‘sign up’. If you do proceed to get health insurance for her, even with a stand down time of 3 years, Abby will still be under 20 and can access the specialists with expertise to treat and manage with gold standard best practice. It may not be as expensive as you think and it’s only a phone call to find out.
The ‘me’ program in schools addresses these problems and we are advocates for early intervention so that girls and women’s lives are not compromised. We’re working with government and the clinical directors to develop clinical pathways to ensure symptoms are recognised early and timely intervention is sought. Is ‘me’ in Abby’s school? There will be others like her suffering similarly and the school can contact us to make arrangements.
RESPONSES FROM ENZ FACEBOOK MEMBERS (NAMES OMITTED):
August 2016, Responses from: VP Singh, Keith Harrison, Neil Johnson and Hannah Blakely
QUESTION 1: When is it the right time to discuss the possibility of further surgery?
My last lap was 2 years and 3 months ago. I’ve tried many medical therapies with some success, but symptom relief only ever lasts a couple of months at most, before bleeding starts and symptoms return with a vengeance. I have tried diet, naturopathy and various natural things as well, but haven’t found any lasting relief. I feel like there’s something inside me that’s constantly fighting whatever I try to do to ease my symptoms, and in the end the pain and bleeding always return. My Gynaecologist hasn’t ruled out further surgery, but wants to try everything else she can first. I realise that it’s always best to avoid surgery if possible, but I’m at my wits end and am wondering if it’s time to broach the subject?
So, in short, my question is, when do symptoms and failure of medical therapies to ease symptoms indicate that surgery could be required?
Dr VP Singh: It is such a common question and yet there is so much variability amongst practitioners.
In my view the first surgery is the best surgery and if the disease has been comprehensively excised then there is little point in going back in within 5 years. Concerted effort in managing pain with hormones, neuropathic pain medications, CBT, physio, exercise and diet will see most patients enjoy a comfortable and productive life. Jason Abbots study demonstrated the law of diminishing returns after the first surgery. Also it tends to reinforce the view that chronic pain can be cut out by surgery which is not the case. It is not uncommon for me to see patients who have had 7-8 surgeries on annual basis with worsening pain after each surgery. Setting up right expectations of ‘relief’ not ‘cure’ and Chronic pain management pathways generally succeed in these patients.
I think all endometriosis surgeons need to up skill in chronic pain management.
Dr Keith Harrison: Good question! I would consider repeat surgery at the point that symptoms become intolerable again and non-surgical treatments have failed which seems to be where this woman is currently at. I would want to know the extent and duration of symptom relief from her last surgery as a guide. Like this persons’ gynaecologist, I try to delay repeat surgery as long as possible especially in younger women
Dr Neil Johnson: Interesting question and, yes, one commonly asked …
The gynaecologist is wise to explore non-surgical options. These would doubtless include evidence based options such as progestin hormones or the oral contraceptive pill, the Mirena intrauterine system, even GnRH analogue injections with addback hormone therapy. Prior to a new medical therapy, have dietary and lifestyle factors been reviewed such as more ‘natural’ evidence based alternatives, such as vitamin B1 and B6, magnesium and fish oils and acupuncture as an evidence based complementary approach? The holistic multidisciplinary approach may include pelvic floor physiotherapy and / or psychology given the often distressing toll chronic or persistent pain can take.
Repeat surgery – especially in the same setting – is normally associated with less successful results than primary surgery. Sometimes consultation with a recognised advanced laparoscopic surgeon might be worthwhile. And if repeat surgery is considered to be required and is undertaken, it is often useful to combine this with another intervention (such as Mirena insertion at the same time, although there are other options) in the context of a recurrence of symptoms after primary surgery.
Hannah Blakely: Manging these decision making processes can be challenging in knowing when the timing is right. People who live with endometriosis may experience chronic pain. This is often described as persistent pelvic pain that lasts for over six months with pain on more days than most.
One consideration may be the impact of pain and other physical symptoms on your mental health. If pain becomes overwhelming and is not adequately managed it may be time to look at other treatments and support. One of these may be discussing further surgery. In addition to this, seeking psychological support for help in management of anxiety and/or mood problems may be appropriate.
Indicators of anxiety becoming a problem may be the following: Finding yourself worrying about your endometriosis/health/pain/and its impact etc., frequently for periods in the day or night. When worrying you have trouble shifting your attention to the things you are doing or wish to and/or it gets in the way of you attending to the things you want to be doing. The worry has been present and distressing to you for a period of months and feels uncontrollable.
Mood and symptoms of depression can be a common problem for women managing endometriosis. Things to consider when checking in with your mood are: feeling down, depressed or irritable most days, more often than not, consistently over a two week period. Lacking pleasure or enjoyment in the things you would normally do as well as a change in sleep, appetite, motivation and energy levels for example.
Other things that can be impacted upon by chronic pain and endometriosis is sexuality, intimate and general relationships, and sleep.
Psychological treatment for these difficulties provide strategies to reduce symptoms of anxiety and depression and manage problems in other areas, which may occur before after or in spite of surgical treatment options. Some women find one to two sessions to ‘check in’ with how they are coping is enough, for others more than a few sessions is helpful, and for most, knowing you’re doing the best you can is important.
FURTHER INFORMATION FROM ENZ:
We think this is an excellent question and one that crops up very regularly all over the world.
There is a ‘move away’ from performing multiple surgeries, as the general results of doing such lack evidence in showing improved outcomes for patients long term and can cause further pelvic trauma. This is why we emphasise the importance of surgery being best performed by a gynaecologist with advanced laparoscopic skills who can fully excise endometriosis. Excision is the gold standard surgical treatment. The aim is that the first surgery should be the best surgery. All the endometriosis must be removed and the anatomy restored to normal for best outcomes. Recurrent endometriosis may mean that the disease was not fully removed or resected in previous surgeries. However, endometriosis remains an enigma and sometimes endometriosis will recur following excision, even by the most experienced, advanced laparoscopic surgeons. This is also why we encourage you to consider having private health insurance as most gynaecologists who are advanced laparoscopic surgeons, work in private practice. In other words, not all surgeries are the same and not all gynaecologists perform the same gold standard technique. You can find out more about private health insurance for you or your family by clicking here http://www.adelphiinsurance.co.nz
The truth is, we just don’t know the true recurrence rate. However, we do know that it varies enormously from around 10% to over 50% (we have heard 80% mentioned) and the bias depends on many factors including the setting and the gynaecologist / surgeon. It is wonderful to see WERF (World Endometriosis Research Foundation) developing tools for international use so that the data can be captured in longitudinal studies. http://endometriosisfoundation.org/ephect/ Even in very well designed studies, the bias is confounding and can include patients being lost to follow up and whether the surgeon undertook the surgery in a centre offering expertise in treating endometriosis. In such cases, recurrence is usually much lower and this makes a big and positive difference to the patient.
In cases where the pain is experienced on most days and has lasted longer than 6 months, the condition has often become more complex to treat. A multi-disciplinary management plan is best practice which can include reviewing whether further surgery is now the right option. However, this should also be considered together with other interventions, where there is a persistent pelvic pain condition, as surgery on its own is unlikely to resolve all the symptoms. Muscles and nerves are probably now involved and pelvic physiotherapy can be integral to this treatment. Bowel and bladder function require assessment and management (refer nutrition on the ENZ website) and the long term psychological impact requires assessment and those interventions considered.
July 2016, Responses from: Leena St Martin and Hannah Blakely
QUESTION 1: It can be so challenging trying to manage the fluctuating emotions that endo brings. I can feel fine one day and then the next I wake up feeling anxious or melancholic. What advice or suggestions can you give on how to manage these fluctuating emotions?
Leena St Martin: Regarding managing fluctuating emotions, the first point I would make is that it is entirely normal to experience a broad range of emotions. Usually it is helpful to acknowledge and explore the emotion rather than brush it away. In the therapy session I might use the following steps to help people work through why they are feeling a particular way. Firstly, I ask my client to notice what was happening just before they began to feel melancholic, anxious etc. Was there a particular thought, memory or image which passed through their awareness? Is their mood also affected by physical pain, lack of sleep, hunger, or other physical/environmental factors? If so, what do they need to do for themselves to support their body and brain in the given moment? (e.g. they might need to eat, apply a heat pack, change their position, reduce noise/stimulation etc.)
If there was no particular physical/environmental factor triggering their mood change, then I encourage my client to explore the emotion further by asking more about it e.g. how intense is the melancholy, what size is it, what shape is it, what attention does it require? Do they need to recollect a sad experience and do some journaling? Do they need to visit a special place to honour the emotion? Do they need to discharge the emotional intensity physically first? If the client is in a situation where it is simply too overwhelming or unsafe to explore the emotion, then techniques like distraction and distress tolerance have a part to play. There are some excellent on-line tools describing these techniques
Hannah Blakely: Emotions may fluctuate for a number of reasons, including management of both physical (e.g. pain, bloating, medical management) and psychological (e.g. fear and pain avoidance, sleep disturbance, relationship and sexuality) aspects of endometriosis.
Try not to supress or push emotion away. The more we try to avoid and supress, through perceived relief in the short term the more likely our emotions will ‘bubble up’ and have an effect with greater intensity than before. Research has shown when we feel melancholic, anxious or flat in mood, depending on how tolerable or intense they are; doing enjoyable activity mindfully can help change and improve our emotion. First, notice the emotion you feel. Try not to judge that emotion as we know the attributions or judgement we make is the part that sticks for future experiences of the same emotion. Following noticing, the next step is shifting your attention from focus on mood to doing something else that you may get pleasure from. If we remain focused on the unpleasant emotion it can continue – a bit like ignoring a child tantrum- keep an eye on it – notice what is occurring but not giving attention to it!
The enjoyable activity need not be excessive, but must be manageable and achievable. For example; some people find going for a walk helps to shift their attention and focus from internal emotion to focusing on the external environment (what’s going on right now around you). Others enjoy reading, taking a hot bath, using a special hand cream, baking etc. When doing the activity take a moment to notice any change in your emotion. It may not occur the first time however, keep trying as over time this may help shift that mood that’s dragging you to one that could help you get on with your better day.
QUESTION 2: What are some good ways to support people I know with Endo who also have depression or anxiety (or both) as a consequence of their health issues?
Leena St Martin: Supporters can be helpful to the endo-sufferer who is experiencing depression and anxiety by listening attentively and validating their emotional experience (e.g. by making statements like “it makes sense you feel x today”, “what could you do for yourself today to feel better/differently?”). If suicidal thoughts are mentioned, take these seriously and ask whether the sufferer would agree to speak to a professional. Once again, there are excellent on-line tips available
Hannah Blakely: Living with endometriosis may feel for some at times emotionally overwhelming and among other things may contribute to anxiety and depression symptoms. To support those who are struggling with depression or anxiety the following tips may be helpful.
Being available to listen and validate their experience can be very therapeutic. Using phrases and questions like “it sounds like this is really difficult for you…” or “what would you like me to do to support you right now…” may let them know you are interested in what’s happening for them.
Depending on how they respond another idea may be getting them involved in activity to help shift the focus from their mood to being closer to focusing on other things – and potentially feeling better.
Checking how your friend is feeling is important particularly if their mood’s low and they are having suicidal thoughts or talking about harming themselves. In this case encouraging them to tell their family or friends and visit their GP who can support them to get specialist help.
Further information from ENZ:
When pain has lasted longer than 3 to 6 months and is experienced on most days, it has become a persistent (chronic) pain condition. Girls and women with endometriosis and persistent pelvic pain can also have bouts of acute pain. Persistent pain conditions can evoke emotional responses that can lead to changes in behaviour, mood and the way we function and think about ourselves and others. It’s just one of the aspects of endometriosis that make it so cruel and often debilitating. When a condition becomes persistent, it can be more complex to treat. When things become this bad, often surgery alone is not enough to remove all the pain or suppress symptoms. This is often despite the gold standard excision technique, practiced by gynaecologists who have expertise in treating endometriosis. However, good surgery is absolutely key and with your endometriosis excised and anatomy restored to normal, there will usually be some symptomatic improvement. You can now find out about the other evidence based practices and therapies which can help you reach that ‘well place’ you want to be. Hannah Blakely and Leena St Martin (Clinical Psychologists) have responded to ASK ESIG questions about how they help you re-focus, and retrain the brain with various practices and CBT. ENZ advocate a multi-disciplinary approach to treating endometriosis.
June 2016, Responses from: Leanne Wait
QUESTION 1: How does pelvic floor physiotherapy actually help in women with Endometriosis, and what are the mechanics behind some of the muscular causes of pelvic pain that physios treat?
Leanne Wait: This is a great question because the role of the muscles and pelvic health physio (who provide pelvic floor physiotherapy) is often poorly acknowledged. Women with endometriosis experience pain for many reasons and the reasons and science behind how this all fits together is complex and can be confusing. So let’s take a closer look at some of the mechanisms of pain that physiotherapy can help with.
Physiotherapy can help in many cases but each person presents with a mixture of similar but different signs and symptoms and we all have different goals of what we would like to change or achieve.
Pelvic health physios are great listeners, we spend a lot of time listening to our patients, caring for their well-being and being a great source of support and encouragement. I hope this has given you some insight into how we may help you.
June 2016, Responses from: Guy Gudex, Simon Edmonds, Michael East and Neil Johnson
QUESTION 1: “I am considering paying for my second laparoscopy myself. I want to know whether it is worth seeking out the best laparoscopic surgeon? Does the skill of the surgeon make a difference to the recurrence of endometriosis?”
Dr Guy Gudex: “The experience and skill of a surgeon can make a difference with respect to the chance of recurrence of endometriosis, particularly depending on the site of the endometriosis.
If the endometriosis is involving the bowel or the space between the vagina and rectum (recto-vaginal septum) then the extent to which that is treated may vary from surgeon to surgeon based on the age of the patient, symptoms, whether fertility is an issue or not and the experience and training of the surgeon.
Endometriosis in the ovary (endometrioma) can recur up to 10% of the time no matter which method is used to treat them surgically and again surgical management can vary depending on the particular circumstances of the patient.
If you are concerned you should ask about the relevant experience of the surgeon you have been allocated in the public system. Most District Health Boards have gynaecologists with a special interest in laparoscopic surgery.”
Dr Simon Edmonds: “All gynaecologists in New Zealand are trained to a basic level of laparoscopic surgery as per the RANZCOG training programme. This should include making the diagnosis of endometriosis and performing diathermy and minor excision of disease.
Some gynaecologists have specialized further either by having an interest and experience in managing endometriosis, or by undertaking a fellowship training programme. For the last 4 years, the AGES (Australasian Gynaecological Endoscopic Surgery Society) has endorsed a 2-year structured training Fellowship programme in Australia and New Zealand. There are a number of other good quality informal laparoscopic fellowships for trainees across the country.
Many public hospitals across NZ will have a lead consultant in this type of surgery and you should ask if unsure.
For more advanced endometriosis, particularly involving the rectum (rectovaginal endometriosis), or for women with refractory pain, a multidisciplinary approach is required, with involvement of other specialties such as colorectal surgery, urology, pain teams, health psychologists, dietitians and physiotherapists.
If you wish to see someone in the private sector using insurance or self pay, then the advice as above should still apply. You can ask your GP and past patients who they would recommend or check out the ESIG page on the Endometriosis NZ website. Many surgeons will have information on a website. This may help you to find the most appropriate clinician.”
Dr Michael East: “The persistence of symptoms and the persistence of disease may not be one and the same thing. Skill level is important especially when one is dealing with stage 3 and 4 disease. However once any kind of treatment surgery has been performed, a very careful appraisal is required before subjecting oneself to further surgery. Remember, surgery itself is a trauma and the law of diminishing returns, definitely exists with regard to repeated surgeries. The strategy for improving your quality of life needs to be multifaceted regarding investigations and treatments. The most important thing you can do now is to read widely and then seek a management opinion from a well respected clinician who is known to work in a multidisciplinary centre that at least includes physiotherapists and dietitians etc.”
Dr Neil Johnson: “The WES consensus statement – into which there was considerable consumer input, reinforces some of the points already made and makes other points that at least have a level of consensus concerning surgery and secondary surgery. Here’s the link to an overview of the Consensus Statement. A link to the full publication:
Best practice, gold standard surgery is excision or resection to remove the endometriosis. The skill of the gynaecologist does matter! The first surgery should be the best surgery. Multiple surgeries are now ill advised and can cause further pelvic trauma.
We are fortunate to have several gynaecologists who are also advanced laparoscopic surgeons in New Zealand, some of whom also work in the DHBs. Follow the advice of Dr’s Guy Gudex, Simon Edmonds, Neil Johnson and Michael East (all of whom are advanced laparoscopic surgeons and excise the endometriosis) and ASK your gynaecologist about their relevant surgical experience. Given that most gynaecologists who have expertise in treating and managing endometriosis and who offer a multi-disciplinary approach work in private practice, you may want to consider getting private medical insurance. It is available to you even if you have a diagnosis of endometriosis. You can contact Adelphi Insurance Brokers who understand about surgery for endometriosis and can advise you at no cost. http://www.adelphiinsurance.co.nz
May 2016, Responses from: Charles Koh and Neil Johnson
QUESTION 1: Does getting pregnant help women get rid of Endometriosis? I have heard from other people that symptoms go away while pregnant and while breast feeding, but I haven’t found any solid information on this or if having a child can sometimes get rid of Endometriosis all together.
Dr Charles Koh: Pregnancy may suppress symptoms temporarily but these return after delivery. So the old ‘advice’ to get pregnant to get rid of endometriosis is untrue.
Dr Neil Johnson: You’re right, solid information is sparse. But our experience is that most women’s symptoms may disappear (or at least improve) during pregnancy and breastfeeding. Anecdotally there is a permanent improvement in symptoms for some women.
QUESTION 2: Does having endometriosis subject a pregnant woman to being more prone to hyperemesis? What hormone is responsible AND, for those not diagnosed, could it be a ‘heads up’ symptom of endometriosis?
FYI – Hyperemesis Gravidarum is a complication of pregnancy characterised by severe nausea and vomiting leading to weight loss and dehydration. It is more severe than morning sickness.
Dr Charles Koh: None of these are true.
Dr Neil Johnson: There is no known association between endometriosis and hyperemesis gravidarum, so as far as we know, this can’t be considered a ‘heads up’ symptom of endometriosis. The hormonal cause – probably a combination of beta hCG and progesterone.
April 2016, Responses from: Charles Koh, Neil Johnson and Susan Evans
QUESTION 1: I have had a hysterectomy / bi-lateral oopherectomy and now have fibromyalgia. Many of those I know with endometriosis who have had similar treatments, also have this condition. Is this a pattern caused by endometriosis?
Dr Charles Koh: “It is an association sometimes, not a causation.”
Dr Neil Johnson: Although there is not a strong association recognised between endometriosis and fibromyalgia, because of the autoimmune features of both conditions, there is some overlap. So yes, women with endometriosis are more prone to having fibromyalgia. We’re not aware of any causative link of surgery such as hysterectomy/bilateral oophorectomy and the development of fibromyalgia.”
Dr Susan Evans: “recommendations for fibromyalgia:
February 2016, Responses from: Michael East
Is irregular bleeding a symptom of endometriosis?
Michael East: In my experience ‘dysfunctional bleeding’ is very common among endometriosis sufferers and in many cases unresponsive to the combined contraceptive pill (COC) or Depo Provera or even Mirena. The bleeding often predates the period proper and is ofter dark and ’tar like’ in consistency. We know the normal lining of the uterus (endometrium) is affected my endometriosis elsewhere probably caused by the inflammatory molecules that it produces. Not getting your period every month however may be due to other causes that may interfere with regular egg release. You should discuss any such concerns with your medical team.
December 2015, Responses from: Phill McChesney and Lakshmi Ravikanti
I’m 23 and my husband is 28. We’ve been trying to conceive for a year with no luck. In that time I’ve had 2 surgeries to treat mild endo as well as an early miscarriage. Does anyone know if there are medications other than folic acid and iodine, to help conceive and stay pregnant? My doctor has said to go back in April 2016 if we’ve had no luck. So I’d love your advice.
Dr Phill McChesney: “In terms of conceiving and staying pregnant in the setting of mild endometriosis, unfortunately there are no simple medications that clearly benefit. Taking folic acid supplementation is important for all women trying to conceive and iodine is mainly important once pregnant.
For most women, an early miscarriage is a chance event (in the order of 15% at a young age) due to chromosomal abnormality of the pregnancy, and is not related to any pelvic pathology. There is a high chance of a normally progressing pregnancy in the future, without doing anything differently. Maintaining a healthy weight and lifestyle for both partners is usually all that needs to be done.
Fertility is a complex issue and when there is a delay or anxiety, a thorough investigation of both partners by a fertility specialist is the most appropriate way forward. Once investigation is complete, there may be various options available to hasten conception.”
Dr Lakshmi Ravikanti: “If you have not conceived after trying for 6 months, you should consult a fertility specialist. You can do this by contacting a fertility clinic and making an appointment. This 23 year old woman would be eligible for a publicly funded consultation. Both the woman and her partner need further investigations.
When a woman is trying to get pregnant she should continue taking folic acid 0.8 mg a day until she is 14 weeks pregnant to prevent neural tube defects in baby. She can start taking Iodine as soon as she gets a positive pregnancy test.”
November 2015, Responses from: Michael East
“I read the comments recently posted by some of you regarding your experiences with Mirena. Many were negative as is often the way when someone who has suffered from its use, asks for comments from others. Such comments tend to be mainly from fellow sufferers. As a clinician who inserts a lot of Mirena intra uterine devices, I would like to share with you how it can help many women and also to point out how to recognise if it is not suiting you.” – Michael East
Michael East: Usually in my experience it is generally part of the solution and not part of the problem. Firstly let us consider what a Mirena consists of:
It is ‘T-shaped’ plastic (nylon) device that has a slow release hormone capsule attached to the ‘stalk’ of the T. It acts as a very efficient contraceptive and has a 5 year lifespan.
What are its properties?
The ‘T’ serves to hold the hormone capsule inside the cavity of the uterus. It is chemically inert but as a foreign body it can act as an irritant to the uterus causing the uterine muscle to contract and cramp more often. This is more likely to occur in teenagers as the uterus is smaller and the ‘fit’ a little tighter. The hormone is a copy of the female hormone progesterone, and has two main actions:
Generally, the hormone effect tends to dominate over the foreign body effect, and if that is so, then a Mirena tends to produce benefit to the user. If the foreign body effect is dominant, then cramps and bleeding can aggravate endometriosis symptoms.
The amount of hormone that leaks into the rest of a woman’s body is equivalent to taking one progesterone only contraceptive pill per week. As a result most women do not experience hormone related side effects. Some women however are sensitive to this small hormone leak and experience a deterioration of acne or a flatness of mood. Some women find that their cyclical mood swings get worse, while others notice no difference or improvement.
Who do I advise to have a Mirena placed?
Most women undergoing surgery for endometriosis in my experience, benefit from having a Mirena placed at the time of surgery while they are asleep. They should be warned that it takes at least three months to ‘settle in’ and breakthrough bleeding can be an issue during this time, along with cramping. In other words they need to ‘cut it some slack’ during that time. It tends to eventually add to the effectiveness of surgery and there is growing evidence that it decreases the number of women needing repeat operations for recurrent endo symptoms.
Who do I advise to avoid a Mirena?
Obviously if you are trying to become pregnant it is a no brainer. The main group of women that I suggest do not to have a Mirena are those who have a diagnosis of ‘polycystic ovary syndrome’ (PCOS), as it tends to aggravate acne or abnormal body and facial hair growth.
It a Mirena right for you?
The only real way to know is to try one and see.
I could write so much more however I was instructed to be brief!