Conversation Endo

Written by Lucy McPhedran.

‘We found severe endometriosis, and we removed everything we could see. I’ll come back in the morning and show you pictures’. These were the words of my gynaecologist as I awoke in a fog from four hours of general anaesthetic.

This woman had just said the most validating sentence of my life so far, and it wasn’t just the fentanyl making me think so. It was all real. I wasn’t losing my mind and maybe I would feel better now.

I had spent the previous twelve years back and forth between numerous doctors, naturopaths and psychologists trying to figure out my mysterious abdominal pain, severe fatigue and nausea. Nothing showed up on normal ultrasound scans or colonoscopy. I had been told, and had also told myself again and again, that it was most likely psychosomatic, a term I had learnt in nursing school and had assigned immediately to my own symptoms.

In my shame and embarrassment, I had told myself, ‘You’re being crazy and overly anxious’, a view that was, unfortunately, shared by quite a few medical professionals. To wake up and be told that it was absolutely real was, and still remains, one of the best feelings of my life.

Unfortunately, I am just one in a very long line of endometriosis sufferers who have only achieved the same validation by allowing a surgeon to make four incisions in their abdomens and brutally excise internal tissue for several hours. This is what it takes for us to believe that we are not crazy. It is a pretty extreme way of being able to say, ‘I told you so’.

I walked out of hospital with a packet of Panadeine Forte and a newfound confidence in myself. I realised that day that every endometriosis sufferer needs a little voice in their head telling them they’re not making it up; it is real. I feel a responsibility to tell anyone in possession of a uterus, ‘If you feel that something is wrong, it probably IS’.

"In my shame and embarrassment, I had told myself, ‘You’re being crazy and overly anxious’, a view that was, unfortunately, shared by quite a few medical professionals. To wake up and be told that it was absolutely real was, and still remains, one of the best feelings of my life."

On reflection, I attribute my diagnosis and treatment to the fact that I’m a nurse. This has nothing to do with my medical training. I don’t think endometriosis was mentioned once in my three-year university degree and 800+ hours of clinical practice. It all comes down to this: I work in a unit with two hundred nurses; male, female and non-binary, but a large majority of cis-gendered females. I work in a place where someone at any given time has their period. It’s also a place where we are not shy about bodily fluids. We all discuss it, all the time. When I first mentioned having horrific abdominal pain during my period and beyond, someone simply said ‘Oh, you probably have endometriosis, my sister has it’.

Time and time again, endometriosis was raised, with all of my colleagues’ accompanying stories. Until, finally, I became very close friends with another nurse with established severe endometriosis, who told me, ‘You’re absolutely not making it up. This is what it is’.

Upon pondering whether surgery was the right move, a different nursing friend said ‘Maybe they go in and don’t find anything, but something is still wrong’. Now imagine where I would be if I hadn’t been around a hundred other menstruating people, perhaps in an industry dominated by cisgender males, where menstruation is still a taboo, an issue only affecting women so not worth discussing, let alone openly confronting the reality of crippling pain.

I know for a fact that my endometriosis diagnosis has led to others in my workplace being diagnosed and treated – in fact one friend’s symptoms had been left for so long that she required a bowel resection.

The chain reaction that we can set off by talking about periods and endometriosis is phenomenal. Ending period poverty, speaking about menstruation gender-inclusively and simply stopping the spread of misinformation about endometriosis are all significant steps in the fight against this disease. Realising the enormity of endometriosis has left me often unable to speak of anything else. There are reports of foetal and paediatric endometriosis; it reaches far beyond ciswomen of child-bearing age. Discounting endometriosis as a ‘women’s disease’ has been the biggest disservice to sufferers, triggering off a constant chain-reaction of dismissing any problems associated with menstruation and making it significantly more difficult for non-binary and trans sufferers to be acknowledged and access treatment.

I am constantly in utter disbelief at the blatant misinformation published about endometriosis. If the same incorrect definitions were published time and time again about asthma or diabetes, it would not be accepted in the medical profession. Yet ineffective treatment of endometriosis is readily accepted and allowed in the Australian medical community – many obstetrician/gynaecologists continue to perform ablation and hysterectomy, neither of which is the gold standard of treatment for the disease. I find this a difficult pill to swallow, working on a highly skilled and evidence-based critical care unit, where I cannot imagine ineffective elective treatment being offered to patients. I also cannot imagine the effect this would have on the population we service.

The number of people who reported being endometriosis sufferers to me at work after I posted about my surgery on social media is staggering. I realised then that my voice adds another decibel to the already resonant and rising collective voice of endometriosis sufferers. Although I may only ever reach a small pool of people, those people deserve to know. What if one of them goes to their doctor, won’t take no for an answer, gets diagnosed quickly, and tells another friend about it?

"The chain reaction that we can set off by talking about periods and endometriosis is phenomenal".

I learnt a long time ago that people will always make a judgement when you do anything. Talk about it, don’t talk about it, ask a question about it – someone won’t like it. In the wise words of Amy Poehler, ‘I don’t care if you like it’. I don’t care if society is sick of hearing about endometriosis. We’ve barely even started.

- Lucy McPhedran

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*Endometriosis Australia acknowledges individuals in the transgender community and people who are non-binary and living with endometriosis who may not identify as women

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