Living with Endometriosis: What I Wish Someone Had Told Me

I don't often write about my own experience. But endometriosis is one of those conditions where I feel strongly that hearing from someone who has actually lived it — not just treated it — matters. So this post is a little different.

I have endometriosis. I was diagnosed after years of debilitating periods that I was repeatedly told were normal, followed by two laparoscopies that confirmed what I'd suspected for a long time. Like so many women, I spent years being dismissed, managing on painkillers, and assuming that suffering was simply part of being a woman.

It isn't. And I want every patient who comes to see me to know that from someone who means it.

The part the medical system couldn't fix

I'm not writing this to criticise the NHS or the doctors who treated me — endometriosis is genuinely complex and the diagnostic journey is hard for everyone involved. But after two surgeries, I found myself still in pain, still exhausted, and still without a clear path forward.

What I needed wasn't more surgery. It was someone to look at what endometriosis was doing to the rest of my body — the muscles, the fascia, the pelvis, the way I was holding myself and moving in response to years of chronic pain. That's not something surgery addresses, because surgery treats the disease itself, not what the disease has done to the surrounding structures over years of inflammation, tension, and compensation.

That's where osteopathy came in for me. Not as a cure. Not as an alternative to medical treatment. But as a way of addressing the physical fallout that chronic pelvic pain leaves behind — and giving me back some sense of control over my own body.

What actually helped

I want to be honest here, because I think women with endometriosis deserve honesty rather than promises.

Osteopathic treatment helped me significantly with the muscular and fascial component of my pain — the tight, spasming pelvic floor, the hip and lower back tension, the "endo belly" that made me look and feel six months pregnant on bad days. It helped me understand how my body was compensating for years of pain, and how to start undoing some of those patterns.

Combined with some dietary changes — reducing inflammatory foods, paying attention to how specific things affected my symptoms — I've reached a place where endometriosis no longer runs my life. I still have it. Some months are harder than others. But I'm no longer cancelling plans, spending days in bed, or feeling like my body is working against me.

That's not a miracle story. It's a long, unglamorous process of finding the right combination of support. But it is genuinely possible to feel significantly better, and I don't think women hear that enough.

What I wish someone had told me earlier

That the pain is real, and it is not in your head. I cannot count the number of patients who come to me having been told, in so many words, that their pain is an overreaction. It is not. Endometriosis causes real, measurable physical changes to the pelvis and surrounding structures, and the pain it produces is completely legitimate.

That you don't have to choose between surgery and suffering. There is a lot of middle ground. Osteopathy, pelvic physiotherapy, dietary changes, pain management support, and psychological support are all evidence-informed options that can make a significant difference — either alongside or between surgical interventions.

That treating the endometriosis and treating the pain are not always the same thing. Surgery removes the lesions. It doesn't necessarily address the years of muscular tension, scar tissue, postural compensation, and pelvic floor dysfunction that have built up around them. Those things often need treating separately, and they're often the thing that keeps women in pain even after a "successful" operation.

That asking for more support is not weakness. It took me far too long to seek out the combination of help that eventually worked. I kept hoping the next medical intervention would be enough. It wasn't, until I also addressed the physical, dietary, and lifestyle piece alongside it.

That you know your body better than anyone. If something feels wrong, keep pushing. The average diagnostic delay for endometriosis is still around seven to ten years in the UK. That is not acceptable, and it is not your fault.

How I try to help my patients

When a woman with endometriosis comes to see me, she gets someone who understands what it feels like to dread your period for two weeks before it arrives. Someone who knows what it's like to cancel things you were looking forward to, to feel like you're being dramatic, to be exhausted not just by the pain but by the sheer relentlessness of managing a chronic condition alongside a normal life.

That doesn't mean I can fix it. But it does mean I listen differently, assess differently, and — I hope — make the clinic feel like a place where you don't have to justify your pain or explain why it matters.

If you'd like to know more about how osteopathy can help with endometriosis specifically, my earlier post 5 Things That Osteopathy Can Do To Improve Your Endometriosis Pain covers the clinical detail. You can also read about pelvic pain treatment at the clinic, or book an appointment if you'd like to come and talk things through.

You are not your pain. And you deserve more than being told to put up with it.

— Sally