Don't worry about your pain - focus on being hot
On the agonising wait for an endometriosis (or not?) diagnosis
Before we start, I want to say that there are so many women with endometriosis who remain unheard. I recommend you listen to them and their experiences - they will have a much more coherent overview of how it feels to be diagnosed and live with the condition. But there are also 570,000 women on gynaecological waiting lists - not all of them for endometriosis specifically, of course - and so many others who haven’t even been able to get a referral from their GP who remain at the beginning of their average nine-year wait. These people might feel seen in this piece.
Almost a year ago to the day, I hung up from 111 and called my mum to take me to the hospital. When the pain had begun earlier that morning, I joked that I thought I had appendicitis, and my mum rolled her eyes at me. A few hours later, the stabbing in the right hand side of my stomach became too unbearable for me to straighten my torso.
I’d only just been writing something about the gender pain gap, and how women wait 33% longer than men when turning up to A&E with abdominal pain and are up to 25% less likely to receive pain killers. But even by my dismal expectations, things at the hospital were bad. We waited for four hours for bloods to be taken and a doctor to lightly touch my stomach before telling me to come back the next day for a scan to see if it really was appendicitis. The whole time my bones ached like someone was pulling them apart from inside my skin. I didn’t sleep because the pain didn’t go. The ultrasound, taken 16 hours after turning up to A&E, showed my appendix was fine. They saw some ‘fluid’ in my pelvis - it could be a burst cyst, they told me, so keep taking ibuprofen. I cried to a gynaecologist, telling her the pain didn’t feel normal. She said she wasn’t worried about me because I was “lovely and thin”. I was discharged. The next day, I came on my period.
Had it all ‘just’ been period pain? And is that normal? I didn’t know. Worried, I went to my GP to tell her what had happened. They told me they needed to hear what my next two periods were like before she referred me anywhere - the long, complicated history of pain and heaviness and irregularities that culminated in a hospital trip was “not enough evidence”. I spent weeks in anxiety, terrified of my next period. How bad would it be this time? What if there was no one with me to tell me it’s OK or to take me to hospital? What if the hospital did nothing? My body sunk into itself in pain for the next two cycles. The GP referred me.
The gynaecologist I saw months later was amazing - a word that is unfortunately used to describe the behaviour of someone who simply listened and asked questions. He told me this was not normal and that he was almost certain it was endometriosis, a condition I’d heard a lot about but never associated with my symptoms, likely because I had been told time and time again I was fine. I would have to wait for a keyhole surgery to diagnose it, he said, apologising for the post-Covid backlog that might mean I had to wait a while. It’s been six months since that conversation. I’ve not had a letter about my surgery. My phone rings dead when I try to get through to the pre-appointment team, their lines likely unable to connect for all the women queuing to talk to them.
I was in secondary school the first time I realised something might not be right. In the pink-flushed toilets, some friends were talking about how weird having a period is: the slippery churn you sometimes feel when you pull out a tampon or how you poo differently when you’re on. “And that horrible aching feeling in your pubic bone, like someone has lit a match under your vagina,” I laughed. The way they furrowed their brows at me made it clear that was not a universal experience. It turns out, pelvic pain is not part of a normal period. Nor is my mittelschmerz, or ovulation pain, where it feels like someone is washing up dishes in my ovaries mid-cycle. Nor is my lower back ache that’s so clawing it feels like something is alive in the base of my spine every time I bleed.
Waiting for a diagnosis is hard. I don’t want surgery (thinking about being under makes my skin crawl and I’ve written more about this in a piece for the latest issue of Women’s Health magazine, looking at why diagnosing women’s health conditions is so painful, archaic and invasive). I also really don’t want endometriosis. But the longer I go without a label, the more I convince myself that I am the problem. Maybe I don’t have a medical condition and I’m just pathetically unable to cope? Am I weak? Do I have a low pain threshold? Am I an attention seeker? Endometriosis is not just bad period pain - but maybe I just have bad period pain and need to get on with my life. After all, I’m not throwing up or passing out with every period like so many women with the condition are.
The logical side of my brain knows that’s not true. It knows that dismissing my pain is exactly what a patriarchal and misogynistic system wants. At an event I attended this week with femtech brand Daye and The Endometriosis Foundation, the speakers pointed out how one of the largest studies ever done on endometriosis looked at the attractiveness of women with the condition. It concluded women with the condition are good looking because they’re slimmer, have larger breasts and began having sex earlier. We don’t know what causes endometriosis, it takes an average of nine years to diagnose it, there are limited treatment options and no cure, yet this is the work that got the green light for investigation - and a chunk of such a tiny pot of money: around just 2.5% of publicly funded research goes towards reproductive health, despite a third of women having a gynaecological health problem.
This study was not from the 1950s, either - it was published in 2012 and it took around seven years for the paper to be retracted. I feel queasy when I think about the conversations that were had when that study was being signed off. I feel worse when I realise how many days I lose to pain that, whether it’s endometriosis or not, is taken so flippantly by the world. The study echoes the same sentiment I received from the gynaecologist I saw in A&E last year: what you look like matters more than how you feel. Worry more about being hot than about your agony.
It’s so hard to write about endometriosis when you don’t know if you have it. I feel like a fraud for suggesting it might be running rampant around my organs, like it’s a waste of time for anyone to read my opinion on something that I may not have. But I always remember those stats - those hundreds of thousands of other women who are burdened by pain that is currently untreatable because they don’t know what it is and can’t get seen or taken seriously to figure it out. There are many stories like mine - and I’m so sorry if you have one too.
Thanks so much for reading Gray’s Anatomy. As always, I’d love to hear your stories or thoughts. Please leave a comment below.