MORE THAN JUST BAD PERIOD PAIN

More than just bad period pain A changing tide for the treatment of endometriosis

RACHEL SEELEY

Most people are shocked or in disbelief when they get diagnosed with a serious illness. But for me, being diagnosed with endometriosis when I was 23 was a huge relief, because I could finally put a name to the awful, painful thing inside me.

Endometriosis is a chronic disease where cells similar to those that line the uterus (the endometrium) are found in other parts of the body. There is no known cure for endometriosis and the cause is unknown, but it affects 1 in 10 women, girls and trans men. Symptoms can vary greatly but include pelvic and lower back pain (not just during the menstrual cycle), bladder and bowel problems, nausea, bloating, fatigue, and heavy, painful periods.

For many reasons, including the common misconception that period pain is normal and a lack of understanding of the disease all the way from the community through to the health system, it takes an average of seven to twelve years to get a diagnosis.

When I was in school, I absolutely dreaded getting my period. I was plagued with pain the week before, during, and the week after every period, bleeding for ten days every couple of weeks. I dropped out of swimming lessons, I tried to avoid sleepovers, I bled through my night-time uniform of two pads, two pairs of underwear, boxer shorts, pyjama pants and a towel, and I took so many sick days the school became concerned.

It took me around eight years to get a diagnosis, as I had been seeing doctors for these symptoms since I was 15. Being diagnosed was a relief, but I quickly realised how hard it was to find correct information on endometriosis. One doctor would tell me I might never be able to get pregnant, while another would say my fertility wouldn’t be impacted at all. At the same time, I went online and was reading horrifying accounts of women experiencing horrendous pain and multiple surgeries, and became incredibly anxious about what my diagnosis actually meant. It was difficult to make sense of, and it was hard to find support outside of my family. If people didn’t know anything about the disease, if doctors asked me how to spell it, and if my symptoms didn’t fit neatly into a box, how was anyone going to help me? It was confusing and frustrating, and I can’t count how often I was told by medical professionals that I was a mystery, that I was just sensitive, or that periods were just painful for some people. Many doctors’ appointments ended with me sobbing to my mum on the phone because I’d been told there was nothing they could do for me.

What’s worse it that I came to believe this, and thought I had to just live with the pain. I feared more surgeries (I had a second laparoscopy a year after diagnosis), more painful physical examinations, and more uncomfortable scans that didn’t show anything abnormal anyway. By age 28 I’d tried a dozen different medications all meant to stop the endometriosis from returning – instead, they gave me acne, headaches, weight gain, night sweats, night terrors, mood changes, more bleeding, and a cyst in my breast, and the endometriosis returned anyway.

For years I didn’t bother mentioning it to doctors when I was seeing them for something unrelated – I knew I’d either have to explain to them what endometriosis was or, even more frustratingly, be told by a GP during a consult for a flu, or by a nurse during a blood test for low iron, that getting pregnant would clear it right up. Just to be clear, that’s a myth.

In 2016, when I could no longer ignore that I was having the same symptoms again, I joined a local support group and learned a lot about treatment options and specialists, and finally it seemed like this disease made sense. I was no longer a mystery – in fact, many of my symptoms were common among the members of the group, even if they baffled doctors.

I had my third surgery for endometriosis at age 32, but this time I was confident about the outcome. I saw one of the very few endometriosis specialists in Perth, and I had expert excision, which is considered the gold standard of treatment. This time, instead of just burning the endometriosis they could see on the surface of my organs, they completely removed the disease from my pelvic side walls, uterosacral ligaments and around my ureter, and detached my ovary from where it had become tethered.

I was also diagnosed with adenomyosis, which is known as the sister disease of endometriosis, and is when the lining of the uterus (endometrium) grows into the muscle walls of the uterus. The only cure for adenomyosis is to remove the uterus (hysterectomy), and there is very little in the way of treatment options for it.

Even after this surgery and more than a year spent seeing a pelvic physiotherapist, I know pelvic pain will be something I’ll face for much of my life, whether it be because of the adenomyosis, because the endometriosis could possibly return, from ruptured cysts on my ovaries, or from overactive pelvic floor muscles that have become sensitive to pain. But these thoughts no longer terrify me because I now feel confident about my ability to choose the best treatment options and I trust myself to make decisions for my own health.

In 2018 the government launched the National Action Plan for Endometriosis and admitted there are many myths surrounding endometriosis and its treatment, and that this misinformation continues to be delivered by both healthcare professionals and the general public. Together with a public apology from the health minister, this felt like a huge win.

Because what has become incredibly clear to me is that people with endometriosis face huge deficiencies in care. We can’t blame any individual health care provider for that, but we do need support to change an inadequate system that tells people pain is normal, that offers us outdated drugs that only mask symptoms, and that offers surgical treatment that is substandard or incomplete. I know there are many theories about causes and treatments, but I am convinced now that a doctor who spends most of their days delivering babies shouldn’t be in charge of removing diseased tissues from bladders, bowels, ovaries, and anywhere else that endometriosis occurs. Women with endometriosis shouldn’t have surgeries where the doctor removes “as much as they can”, they should have access to specialists who can remove the disease in its entirety.

I don’t know what’s next from here, but I do know we’re on the brink of major changes in the way people with endometriosis are cared for. And it will be our voices and the choices we make for our own treatment that will pave the path for this change.

IF YOU’RE IN PERTH AND ARE LOOKING FOR SUPPORT FROM OTHERS WITH ENDOMETRIOSIS, VISIT

www.endoperthsisters.com