Living well with endometriosis

Posted on 20 March, 2018

Most women experience pelvic pain during their lifetime from a variety of different causes, and some will have a diagnosis of endometriosis made or considered by their doctors.

But where does endometriosis fit into the pelvic pain spectrum? How does it affect women with the condition and those around them?

To mark Endometriosis Awareness Month (March), here’s a quick wrap-up of what we know (and don’t know) about endo.

What is endometriosis?

The simplest explanation for endometriosis is that tissue similar to the lining of the uterus (endometrium) is present in other parts of the body, commonly the pelvis. We think it gets there largely by a process called “retrograde menstruation”, where the menstrual blood leaks back up the fallopian tubes and enters the pelvis instead of just draining out vaginally. Once in the pelvis it can attach there as “lesions” which are affected by hormonal cycles and can cause long-term problems. Conceptually this is a good start point, although the full explanation is a lot more complicated and poorly understood (for example, endo has been found in parts of the body that could not POSSIBLY be explained this way).

When this endometrial-type tissue is present in the pelvis it causes irritation, pain and sometimes the sticking-together (“adhesion”) of structures within the pelvis such as the uterus, bowel, bladder, ovaries and fallopian tubes. Endo or adhesions may interfere with the normal functioning of these organs or cause pain during activities like defecation, urination and intercourse. Endo is toxic to eggs released by the ovaries at ovulation and can cause blockage of the fallopian tubes, contributing to the infertility experienced by many women. Cysts called endometriomas or “chocolate cysts” filled with blood may form on the ovaries, again interfering with fertility. Endometrial deposits called adenomyosis can also be present within the muscular wall of the uterus.

Image courtesy of mdguidelines.com/endometriosis

How will I know if I have Endo?

If you are experiencing pelvic pain or infertility your GP should be the first port of call. A detailed pain and menstrual history should help to distinguish between endometriosis and other possible causes of your symptoms. There will usually be some tests involved as well, including blood tests and a vaginal ultrasound scan.

Recent advances in ultrasound techniques make it clear that ultrasound is a great non-invasive choice for the diagnosis and staging of endometriosis. Laparoscopic surgery should be avoided for diagnosis whenever possible to minimise the number of overall surgeries a woman has to go through. If she is diagnosed with endo that requires surgical treatment, or even multiple surgeries, the risk of complications increases with each one.

How is Endo treated?

It’s important to appreciate that endometriosis is a chronic disease affecting women in a variety of ways over a long period of time, sometimes even beginning in their teens. The pain and infertility it causes can impact all areas of a woman’s life: her ability to work, exercise or care for herself and her family, her relationships, her sexuality, even her mental health and self-esteem. We now know the importance of multidisciplinary care and the importance of self-management strategies.

Looking firstly at multidisciplinary care, an endo treatment plan could include:

A General Practitioner (GP)

It is crucial for women with endo to have a good relationship with a doctor who can initiate first-line medical treatments, coordinate overall care, collate results and make appropriate referrals. GP’s can also work with you to produce a Chronic Disease Care Plan which outlines the role of each care team member. These are Medicare-rebateable and usually bulk-billed.

A Physiotherapist

The importance of a good physio cannot be overstated. Women with endo may have pain with penetration (perhaps even tampon use), intercourse, defecation, urination, or even just sitting and moving about. A good pelvic floor physio can assess and diagnose these problems and teach techniques that reduce pain. Targeted daily stretching and exercises can make a huge difference to pelvic pain. Make sure to check that they specialise in pelvic physiotherapy though!

A Psychologist or counsellor

Women with endo may experience a variety of emotional reactions: grief, anger, frustration, despondency, anxiety and depression among them. They may also experience relationship problems caused by chronic mental health or intimacy problems, even fearing to cuddle or kiss their partner in case it leads to sex (pain!). Individual or couple’s counselling may be appropriate in these circumstances.

A Gynaecologist

Most women with endo will visit a gynaecologist at some point, either for an advanced diagnostic ultrasound, initiation of medical treatment or surgical intervention. Not all gynaecologists perform laparoscopic surgery, and those that do require higher level qualifications to deal with advanced endometriosis, so get your GP to ensure an appropriate referral.

Aside from the specialists above, other allied health and complementary therapists should be approached as appropriate such as dieticians, masseuses, acupuncturists, yoga instructors, etc.

The keynote speaker at ‘Illuminating Endometriosis’, a seminar I attended in 2016, Dr Susan Evans, explained that endo is just one mechanism for the development of Chronic Pelvic Pain (CPP). Besides endo, other causes of pelvic pain such as pelvic muscle spasms, bladder or bowel problems, vulval or vaginal conditions, injuries and sexual trauma can also cause a pain response to the brain that gets larger and stronger over time with constant or repeated pain exposure. The woman becomes hypersensitive to pain, so that eventually perhaps even the most minor non-painful stimulus is perceived by the brain as being painful. But this process can also be gradually reversed, or “down-regulated” with the right treatment. This is where the strategy of self-management becomes all-important.

The same message was repeated by several speakers, including those living with endometriosis: to tackle endo head-on women must be empowered by knowledge; not only by a knowledge of themselves and their own bodies, but by a knowledge of the disease with its various symptoms, sequelae and treatments. The woman must explore what works best for her to manage her pain, how she can best look after herself to maintain optimal health, how to eke the best quality of life she can from every day and maintain great relationships. She needs to consider and explore the possibility that other causes for her pain may exist concurrently with her endo. And she must seek out the support she needs to make all this possible, both from within her sphere and without (as should we all).

By building and accessing support networks women with endo can connect with the experiences of others and share knowledge.

Links and resources

• Book: “Endometriosis and Pelvic Pain 2015”, by Dr Susan Evans. A great step-by-step walk through the various aspects of endo and pelvic pain…. an absolute must-read for any woman with endometriosis or chronic pain.
• The Canberra Endometriosis Network: Local online Support Community
• The Pelvic Pain foundation of Australia: A not-for-profit organisation that promotes information and events about pelvic pain. This site has loads of detailed information about endo including treatment options.
• The Canberra Endometriosis Centre at Canberra Hospital: Services for individuals as well as free group classes about pelvic pain. This link has loads of other endometriosis resources listed. Click here for more info about their services.
• EndoActive: Online information, support and a facebook community
• Junic Specialist Imaging: Diagnostic ultrasound for endometriosis
• Dr Irmina Nahon: Pelvic floor physiotherapist, Canberra
• Sexual Health and Family Planning ACT: Medical services for sexual and reproductive health.

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