‘Vindicated by proving it’s not all in my head’: the journey to an endometriosis diagnosis

Guest post by Hilary Webb

Three years ago, during a routine sexual health check, my GP raised her eyebrows at my answer to one of her questions. I remember her asking, ‘when you say penetrative sex hurts, it’s not a deep pain, is it?’ When she said ‘deep pain’ something clicked. That’s exactly how I’d described it to friends.

I was having the check up at my university health centre in Swansea to try and get an IUD fitted, having fallen out of love with the pill years before. She decided to do a pelvic examination and mumbled from down under, ‘I can’t find your cervix, has anyone ever had any trouble finding it before?’ Now I was raising my eyebrows. She started asking questions about my periods; were they heavy, painful? Yes. She asked if I’d ever heard of endometriosis? I had.

What I knew of endometriosis was that it’s extraordinarily difficult to diagnose; that it takes on average seven and a half years to get a diagnosis in the UK. Yet somehow, eight months later I was in hospital having keyhole surgery to try and find it.

I didn’t have much time to dwell on how I was defying the odds, because my symptoms became increasingly bad throughout my final semester of university. I stopped having sex, gave up running, took a lot of ibuprofen and channeled my remaining energy into my degree. So when the surgeon told me that I had a ‘healthy looking uterus,’ I was surprised but I didn’t question it. He was the gynaecologist, the surgeon, the expert – I trusted him.

I left Swansea and returned to Essex for a difficult recovery and the start of post-grad unemployment. Suddenly I had a lot of time to dwell on it. Assured that the problem wasn’t gynaecological, I changed my language and tried to articulate my pain with words disconnected from my uterus or vagina. In the end I settled on ‘dementors,’ having seen a meme online:

Over the next few months I became angry. I was angry with my GP in Wales. She shared with me that she had endometriosis, and now I wondered if her own experiences had blurred her judgement of my symptoms. I was angry with my gynaecologist. In what world was it right that he had operated on me without ever having performed a pelvic exam or an internal ultrasound? I was angry with myself for not questioning it. I was angry with my new GP in Essex, who refused to accept that my symptoms weren’t gynaecological and referred me in that direction. I became angrier still, this time with my body, when my first painful internal ultrasound revealed two ovarian cysts, one of which was a persistent endometrioma. I had a lot of anger, then, when I met my new gynaecologist.

As soon as I opened my mouth he interrupted me, saying, “we need to get some hormones in you.” The anger took over and I asked him to really listen to me as I explained my physical symptoms and the way they were impacting my everyday life. I couldn’t exercise, I’d stopped dating, I was limiting my job prospects to remote positions, and I was struggling to explain my suddenly stunted life to friends and family because I no longer had the language to articulate my pain. He decided to examine me and immediately identified a ‘superficial’ issue – he diagnosed me with a psychosexual disorder, vaginismus, and suggested psychosexual therapy, physiotherapy and antidepressants.

Initially, I was thrilled to have received some kind of diagnosis. It allowed me to discover the Vaginismus Network, where for the first time I felt like I could say something and the people listening would really, truly get it. The joy of diagnosis unraveled pretty quickly though, as the more I learnt about vaginismus, online, from friends at the network and in therapy, the more it seemed totally detached from my experience. If I did have vaginismus then it was a secondary and situational issue.

Meanwhile, my pain peaked. I tried anti-depressants for pain management but it didn’t work out and so I finally succumbed to going back on the pill. The first few months were rough and involved the worst pain I have ever experienced, before or since. But, while I am still struggling with side effects caused by the pill, eventually my pain lessened and my periods became more manageable.

Unfortunately, vaginal penetration was still unbearably painful and not because of vaginismus. When I complained about this, to doctors and friends, I always felt an overwhelming sense that I was being ungrateful, like there was an expected amount of pain I had to deal with as a person with uterus; that I couldn’t and shouldn’t expect sex to be painless. While I felt this guilt, I also felt an overwhelming sense of injustice. With all options exhausted, my gynaecologist shrugged his shoulders and suggested we go in for another look. I promised myself that if I was going to have surgery again, I had to be better informed.

Research took over. By this point I had started an MSc in gender and sexuality at the LSE and was using my library access to learn as much as I could about painful sex and its interactions with endometriosis, discovering recto-vaginal endometriosis and endometriosis in the recto-uterine pouch. I also came across the work of FTWW – a patient-led network whose brilliant work prompted the Welsh government to admit a ‘demonstrable lack of understanding’ about endometriosis among healthcare practitioners in Wales. Was I a victim of this? Maybe.

Fueled by these two discoveries I tentatively let myself think of my pain as gynaecological again. Going into the second surgery I was less worried about dying and more concerned about how I would cope if I was told there was nothing wrong again, if I was told it was psychological again.

When I woke up from surgery those fears consumed me until my gynaecologist appeared and declared, “it’s not in your head!” before telling me he had found endometriosis exactly where I’d asked him to look – in my recto-uterine pouch. I’ve spent a lot of time thinking about those words, “it’s not in your head!” At first I thought it was really funny and exactly what I needed to hear in that moment. Then I thought it was ironic, because in my head it was never in my head. Except it was; it had been put there by the doubt of others.

It dawned on me to consider the fact that this was the doctor who had suggested it was in my head, the person who had diverted my medical pathway for a year as I experimented with antidepressants and therapy. And yet there he was, jovially proclaiming that it wasn’t in my head after all, like it was no big deal. Suddenly my anger at my GPs, here and in Wales, dissipated. They had given me the best chance at diagnosis; I’d been let down elsewhere.

I’m tempted to get angry again but I’m so tired of having to drive my health outcomes forward by anger rather than compassion and concern. It is alarming how intellectually involved people have to be in order to get an endometriosis diagnosis, and how deeply unfair that burden is on people who are already physically and emotionally debilitated by their pain.

What’s worse is that an endometriosis diagnosis doesn’t necessarily mean improving its symptoms, so why go to all the effort of getting one anyway? Is it to gain access to specialist care? Absolutely. Is it to feel vindicated by proving that it’s not in your head, even if the process of getting a diagnosis stretches the limits of your emotional strength? Perhaps.


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