Leslie, Meet Endo. You Had me at Women’s Health...

You hear about it all the time, but surely a diagnosis for endometriosis couldn't take over a decade, surely?

Anyone who knows me has put up with me sometimes being flaky because of chronic pelvic pain. Not an 'ouch' – I mean doubled over, barely able to breathe, praying I don’t faint. I’ve got actual burn marks on my abdomen from using a scalding hot water bottle for relief so often. That’s how desperate I was to stop the pain.

Two decades. That’s how long I’ve been in pain, dismissed, and sent in circles. Yoga, diet, therapy – been there, done that. Painkillers? First, ones that made me trip but didn’t help. Then, a stronger one that worked but left me hooked. And all the while, I kept being told: Wait until you have a baby. It will all be solved (how medieval is that?).

Years ago, I became convinced I had endometriosis. But I was told it was 'too soon to tell' – this was after just a decade?! Finally, last year after yet more endless tests and a jolly doctor telling me my ovaries (which I no longer have use for) were in great shape, I was given a date for a laparoscopy this March. So I could get a final, definitive answer one way or the other.

Photo by Catherine Heath on Unsplash

So now, I’m writing this from bed, and guess what? No plot twist – I had endo all along. GAH! It was all removed, which means a longer recovery, but what I feel now is an exhausting mix of vindication and pure rage. Now do they believe me?

Small spots of endo can cause excruciating pain. A whole mass of it can go unnoticed pain-wise. I had the former. I kept saying the worst part felt like a dagger stabbing the right side of my abdomen – currently that’s disappeared and it popped up most days.

So if this sounds familiar, please, push for answers. Insist on being taken seriously. Don’t do a me and prioritise everything else bar your health. Hell, I was reprimanded at many jobs for too many sick days and still I didn’t scream and shout for answers. Instead I went to work and tried to function on three hours' sleep, because, as many of us know, pain wakes you up whenever it doesn’t care about the 9 to 5.

Annoyingly this isn’t a unique story, and that’s the problem. Until everyone understands endometriosis, no one will prioritise it. My discharge notes sum it up: 'If the pain doesn’t recede, Leslie will have to go down another route as it isn’t gynaecological.' And that is exactly the issue – because it’s a woman with pain, it’s dismissed, underfunded, and ignored. There’s no money in researching what happens to 1 in 8 women’s bodies in the UK.

I won’t know for months if this worked – or if it will come back. Because yes, endo can return, even after surgery. It depends on how much was removed, whether any hidden lesions were missed, and whether my body decides to let it grow again. Some people get years of relief, others only months. Which is why better treatments, better research, and more awareness are desperately needed. Right now, I feel bashed, sore, and drained. But at least, for the first time in almost twenty years, endo and I are no longer bedfellows.

Today, almost three weeks later and I’m not all hunky dory and fine – yet. Because it was a more serious op I should have been less hasty to get back to work but I was and I overdid it. See that pattern, there? But, this fight isn’t over. Yesterday (Thursday 27 March) on BBC Radio 4’s Woman’s Hour, (12.26 minutes in), I heard Dr Jodie Avery –IMAGENDO Program Manager– talking about a project in Australia using AI to dramatically speed up diagnosis times. Currently, it takes around six years to diagnose endo there, and they’re aiming to reduce that to just one. AI to diagnose, that is something Doc from Back To The Future would approve of. Me too.

And in the UK? A new daily pill for treating endometriosis has just been approved for NHS use in England – finally. Here's the article in The Guardian. These breakthroughs give me hope that, slowly, the world is waking up to the scale and severity of this condition.

Once I’m 100% better, I want to find out who’s pushing to get endometriosis properly recognised – and how we can all help. If you have a story, tell me. We need to support each other. If this post becomes that, a helpful place to share your rants and raves and compare notes with others then – super small silver lining but at least there is one – hurrah! 🙌