1. What is Adenomyosis?

Adenomyosis is found in the muscle wall of the uterus.  It occurs when the inside lining of the uterus (endometrium) shows within the muscular wall of the uterus.  Women may describe heavy and painful periods, and a specialist may notice a ‘bulky’ or ‘boggy’ uterus on examination.  Unless severe, adenomyosis may be difficult to accurately diagnose.  Vaginal ultrasound scan and MRI have become increasingly useful, and diagnosis is usually made using a combination of a patients history, examination findings and pelvic imaging.   Treatment for adenomyosis is complex, and a review with a specialist in this area is recommended.  A hysterectomy (removal of the uterus) may be recommended if a women’s family is complete and other strategies have been unsuccessful.

2. What are Adhesions?

Adhesions are bands of fibrous scar tissue (sometimes they look like rubber bands and or cobwebs) which cause internal organs or tissue to stick together. For example, the ovary to the pelvic side wall. They most commonly present as a result of inflammation or surgery. Some adhesions are congenital (present from birth). They are often seen with endometriosis. Adhesions are normally removed during surgery and precautions taken to prevent development.

3. Paracetamol is not helping my pain. What else can I take to help give me some relief?

Paracetamol belongs to a group of medicines called simple analgesics and helps alleviate mild-moderate pain. Taking an anti-inflammatory either in combination or instead of is sometimes recommended. Codeine is a stronger pain reliever and blocks pain signals from nerves in your body.  It can be used alone or in combination with Paracetamol and anti-inflammatories.  ALWAYS seek professional advice

4. Can I take Ibuprofen and Naproxen together to give me better relief from period pain?

These are anti-inflammatory medications which can help relieve the cramping type of pain associated with periods resulting in less pain, swelling, and inflammation. Anti-inflammatories work better if taken about 24 hours before you expect the pain to occur, otherwise the medication cannot block the pain-producing chemicals as they have already been released. Take anti-inflammatory medications with food as they can cause stomach/gastric irritation. Taking an anti-inflammatory medication and other pain relief can be effective but requires expert advice from your health professional.

5. I have been told that if I go on to the ‘pill’ it can help relieve some of my endometriosis symptoms.  How can a pill used as a contraceptive do this?

The contraceptive pill is often used as a first line treatment to regulate periods and reduce symptoms. There are many different types of ‘pills’ and some are much better suited to help with period pain and endometriosis. Taking the pill continuously decreases the number of periods per year however it can also mask symptoms and the progression of endometriosis. For this reason, recent thoughts are that prescribing pills ‘back to back’ may not be wise if there is no diagnosis. The pill is not suitable for everyone for many reasons (age, cultural, health, choice etc).

6. What is the difference between an IUD and GnRH products?

An IUD (intrauterine device) e.g. Mirena® is a tiny T-shaped device that releases progesterone (levonogestrel) directly to the uterus. The progesterone acts locally in the uterus and only a small amount is transferred to the bloodstream.  The Mirena® IUD provides contraception for up to 5 years and generally stops periods or makes them lighter and has the added benefit that it can also reduce pain and halt the progression of endometriosis.

GnRH (Gonadotrophin Releasing Hormone) analogues are a range of medicines that, when used continuously for longer than 2 weeks cause very little oestrogen to be produced. This deprives the endometrional implants of oestrogen causing them to degenerate.  They are usually given as a long-acting injection once a month for up to 6 months. While on GnRH analogues your periods usually stop, therefore can help reduce painful periods.   Unpleasant side effects can be experienced.

7. I had sex for the first time last year when I was 16 and it really hurt. I know it can hurt the first time but I’ve had sex a few times since then and it still hurts. My periods are really bad as well and sometimes I stay home from school. We had the ‘me’ programme come to my school and we were told that painful sex is never normal. Now I don’t want to do it. What do you think I should do?

Pain with sex is never normal.  There are a number of reasons sex can hurt like if there is not enough lubrication, if your hymen is still intact, if you are anxious and not relaxed or have an infection (like thrush).  Sometimes the pain can be felt deep inside and some women use words like throbbing, stabbing or sharp to describe what they feel. It might even ache afterwards.  Sex wasn’t designed to cause this sort of pain!  Painful sex is a symptom of endometriosis and if your periods are also painful it’s definitely time to talk to someone. Make sure you tell the doctor all the symptoms and the things that you are worried about as it can make you feel miserable and bad about yourself and your relationship.  A doctor might suspect endometriosis and talk about a plan to help your pain and improve your quality of life.  It’s also a good idea to monitor your progress so that everything’s fine in the future if you want to have a family.

8. I’ve had bad endometriosis since my periods started and while I like my job, my boss doesn’t have much sympathy for me.  I’ve used up all my sick leave (mainly on doctor’s visits and surgery). I feel isolated and don’t know what to do.

Unfortunately, this is the reality for many women in the workforce.  Through no fault of their own, many women are in an unenviable position in that they need and want to work and yet their health lets them down. What’s more, having endometriosis is costly in lost productivity, relationships, physically, emotionally and financially.  It’s not only the pain, you can also feel isolated, exhausted and suffer other symptoms too.  It’s usually sensitive discussing these matters with employers, particularly when you don’t seem to be any better despite having treatment.  Your boss may very well have other reasons for having a short fuse and your health concerns have just become another gripe.  It’s time for you to take stock of where you’re at.

  1. Take time to assess your health and your needs. If any symptoms are distressing, you need full gynaecological review as to why.
  2. Take time to talk to someone close to you and share your concerns.  Constantly feeling sick and tired often results in personal isolation. Make a list and tick the boxes as you action the things you’ve decided need doing.
  3. Not all gynaecologists are endometriosis specialists.  You may have had surgery to treat the disease but was it resected or removed by a gynaecologist with expertise in treating endometriosis. We’re fortunate in NZ to have quite a few who do!  Ask for a referral to one of these specialists or to a private endometriosis clinic. We have a number of Endometriosis Specialists who act as advisors to ENZ.
  4. There is usually a medical plan which can offer you relief. You need something to get on top of the pain now, especially if you are on a waiting list to be reviewed. Discuss what medication is going to be suitable as part of your long-term management.
  5. Consider self-management options. For instance, if you have bowel symptoms (like bloating, diarrhoea and fluctuating bowel habit, excess and painful wind and pain going to the toilet) you can modify your diet which can help such a lot.  There are specific foods which tend to trigger symptoms.  This is briefly explained in the ENZ booklet and more comprehensively together with a nutritional plan in the book “Endometriosis and Pelvic Pain”.
  6. Pick a good time to talk to your boss about your health and work.  Often employers will consider ideas which improve productivity and workplace happiness.  Find out about the WISE programme and see whether it would be possible to have this at your work.  WISE covers all topics relating to gynaecology including menopause and fertility and it will be pitched to suit your workplace.  Remember too, that while these are woman’s conditions, men are affected too!
  7. Weigh everything up and think about ‘now’ and your future.  Can you actually afford to take a few months off and concentrate on your health so that you are able to work in the future?

9. What is an endometrioma?

An endometrioma is the medical name for a cyst of endometriosis within an ovary or ovaries.  They are often referred to as chocolate cysts because they are filled with thick chocolaty type fluid.  They are generally associated with more advanced endometriosis.  Surgery to remove endometriomas should be done by a Gynaecologist who can perform advanced laparoscopy, as there are many techniques to optimize your future fertility.  In some situations, such as when a women’s family is complete, a women may elect to have the ovary removed.  You should always be informed and give consent if this option is recommended.

10. Can endometriosis come back after surgery?

This is a commonly asked question and the answer can be complex.  Quite simply the answer is ‘yes’ but it does depend on quite a few factors.

  • We don’t yet know the exact cause of endometriosis so, while it can be removed or excised at surgery, it doesn’t guarantee a cure.
  • The exact percentage of how often endometriosis can come back varies and depends on the type of surgery, the skill of the surgeon and other treatments you may have.
  • The best outcomes tend to be when women are involved in multi-disciplinary care offering expertise in treatment and management.

11. Why am I still in pain when I have tried everything?

This can be so frustrating and exhausting.  Unfortunately it can be common to feel this way.  Read the pages on persistent pelvic pain and treatment and management.  Sometimes it feels as if you’ve tried everything and there’s no hope for having an improved quality of life.  But, there is hope!  Where endometriosis seems to take over and become all consuming, one treatment is often not enough.  When things reach this point surgery or medications on their own are unlikely to be the answer.  This is why we advocate a multi-disciplinary holistic approach to treatment which is considered best practice. Neuropathic pain and nerve entrapment has also been identified as causing ongoing pain.  Is it stabbing, burning or sharp?  Is the pain constant or aching and dull?  The different types of pain are explained fully in the book “Endometriosis and Pelvic Pain”.   You can do a lot to help yourself with self-management. Ultimately if things persist, you will need help from a multi-disciplinary team of experts AND investigate the lifestyle changes which can relieve some of those painful and exhausting symptoms. We are fortunate in New Zealand to have special endometriosis clinics and specialists who can consider all the facts and help you with a pathway to deliver the best possible outcomes.

12. Can I still get endometriosis after I have a hysterectomy?

YES.  Endometriosis needs oestrogen produced by the ovaries to be active, so removing the uterus at hysterectomy doesn’t mean curing the disease.  Many women have relief following hysterectomy but it’s important that the surgeon removes the endometriosis as well, not just the uterus. A hysterectomy will cure adenomyosis when it is in the uterus.  Sometimes, in very severe cases, a surgeon might recommend removing one or both ovaries as well. This is called an oopherectomy or bilateral oopherectomy (both ovaries).  This option requires a lot of discussion with specialists as well as taking into account your own feelings and your age, fertility and other needs.  Be well informed.

13. Can teenagers get endometriosis?

The answer is ABSOLUTELY YES.  It’s really common for symptoms to start in the teen years, sometimes from the very first period. This is particularly so if there’s a family history of endometriosis or menstrual pain and troublesome symptoms.  It’s really important not to delay seeking help as early intervention is vital to improve quality of life, relieve suffering and avoid the possibility of fertility being compromised down the track.

Endometriosis NZ has programmes and services which can help.
The book “Endometriosis and Pelvic Pain” by Dr Susan Evans and Deborah Bush is a ‘must read’ and offers the latest information and advice and practical solutions to live well despite endometriosis.

Strength through support mä te tautoko, ka whai kaha, ka ora

Strength through support - mā te tautoko, ka whai kaha, ka ora

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