Cancelled surgeries and self-management

2020, Responses from: Roberta Mek and Deborah Bush

I have had period issues since I was a teenager, I am now 26 and thinking I have endometriosis. Unfortunately I have a long long wait until my surgery to see if I have endo, is there anything I should / could do to help myself while I wait?

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:

  • are you on the most appropriate medication for symptomatic relief?  This might be pain meds or controlling heavy or persistent bleeding.
  • depending on your symptoms, it may be possible for your GP to contact the Gynae Department (or your consultant) to advise on any interim interventions.
  • contact the Gynae Dept yourself and ask for a call back. This might not be a service they provide but there’s no harm in trying.
  • present at ED if your symptoms become unmanageable.
  • make sure you have a clear understanding about the surgery you are having and make sure this is detailed in your notes.  Not all gynaecologists are advanced laparoscopic surgeons who can excise the disease.
  • you may be able to consider addressing any bowel related symptoms like IBS.  I would suggest a referral to a dietitian specialising in endo (see ESIG) but if this is not possible, review the Ask ESIG files (in particular: Feb 2020, April 2019, February 2019, June 2018, April 2017).
  • exercise: remember, exercise is the best non-drug treatment for pain. Again, the Ask ESIG files have some good tips for exercising (April 2017, May 2018, November 2018 and the video clips featuring Heba Shaheed and Leanne Wait.)
  • a clinical psychologist may help you manage mentally and emotionally. Again, some tips from our Ask ESIG files will be helpful. Clinical Psychologists Hannah Blakely and Leena St Martin have contributed short articles for you, in particular November 2018, June 2017, July 2016.
  • pain can arise from muscles in the pelvis and it may be possible to have a referral and review from a pelvic physiotherapist to ease these spasms. The Ask ESIG files from June 2016 and June 2018 will be helpful.
  • sleep which is disrupted with pain or worry will add to your stress. Discuss this with your GP so that you have some tools to ensure you manage to have good sleep patterns.
  • distraction techniques are very helpful to redirect your thoughts. Some people find engaging in an activity which brings enjoyment and fun is very beneficial to well-being. There are some great classes like singing, art, writing, photography or just following your own passion and loves in your own way.
  • mindfulness: there are many apps (some free) which offer a variety of techniques to assist with coping, sleep and positive well-being
  • support and counselling. The ENZ Facebook groups (public and private) offer tons of information / support and if you’re not already a member, you might like to join. Be aware that there are tens of thousands of social media groups around the world for endo, adeno and pelvic pain.  Choose those which add value to your life and consider limiting the number of sites you are on so that you are not fully immersed in endometriosis and pain.  You need a break from this!   Your GP might be able to refer you to a counsellor under the primary health care scheme (often, depending on the providers, there are 6 free sessions you can access).
  • research and read.  This is a wonderful free downloadable book on pelvic pain
  • investigate your options to get private health insurance. There’s a great article written by Adelphi Insurance Brokers (November 2019).  Adelphi has been guiding women with endo and supporting ENZ for years. They get endo and how it relates to health insurance. It costs nothing to have a chat to see whether you want to explore the option of having private health insurance.

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.

I have a diagnosis of endo but have had my referral through the public system for surgery declined. My pain and symptoms are horrible, in particular my bowel issues, pain with sex and cramps during my period. Is there anything I can do? I am at the end of my tether and am willing to try anything!

Roberta Mek

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.

  • For bowel issues try modifying your diet. You could look into anti-inflammatory, gluten-free, or low FODMAP diet.
  • For painful sex start with pelvic exercises. Seeing a pelvic floor physiotherapist is a good place to start. It may help with your period cramps as well.
  • For pain management, you can try heat packs, acupressure. Alternatively, acupuncture has been shown to reduce endometriosis pain and may help to alleviate stress, improve sleep.

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.

To learn more about Roberta and Deborah

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