Years of pain. Multiple hospital visits. No clear answers. For many with endometriosis, this is still the reality. The issue isn’t just the condition. It’s the system surrounding it.

 

Name: Evelyn Scott

Pronouns: She/Her

Day job: Author of ‘A Bloody Scandal: How Medicine Fails Women in Pain’ (our August 2026)

Location: Farnham, Surrey UK

 

Describe your work in one sentence.

I am a women’s health advocate and author.

 

How did you get here?

After years of agony and multiple surgeries for my endometriosis, I decided I could no longer stay silent. I was tired of being treated like my pain didn’t matter, and of doctors who kept discharging me because they lacked the answers I needed. I didn’t understand why medicine continued to fail women in pain, so I decided to find out.

 

What’s your endometriosis story?

I was diagnosed with endometriosis at 30. After years of hospital admissions and being dismissed because my tests came back normal, I finally encountered an endometriosis specialist in the accident and emergency unit at my local hospital.

By that point, I was completely traumatised by the medical system and felt like my body was betraying me. I was in constant pain, bleeding through countless items of clothing, and the fatigue sometimes left me unable to move my legs. I was on the verge of giving up.

I knew I couldn’t live like this any longer. I was trying to build a career in academia, but it was becoming increasingly difficult to function. I felt like a total failure.

When did you realise it wasn’t normal?

In college, I realised that other girls were having their periods and were still able to function. They came in while menstruating and didn’t bleed through their clothes or collapse in pain. I rarely made it into college on my period, and if I did, I would often collapse or bleed everywhere.

 

How long did the diagnosis take? What was that like?

My diagnosis took 15 years and was completely traumatic. I didn’t receive a comprehensive sex education about what to expect from periods, and my mother was absent while I was growing up, so I had nowhere to turn for advice about my menstrual health. I was left to figure it out myself.

I was referred to gynaecology several times, but was discharged because all my tests came back normal. I now know that endometriosis does not show up in standard tests.

 

What were you told early on that wasn’t right?

Oh, there’s a list. I was told an ultrasound would pick up endometriosis, which turned out to be untrue. I was told it would likely go away after one ablation surgery, but I was back on the referral list for another surgery six months later. I still get told that endometriosis is a disease of the pelvic region, rather than a condition that affects the whole body.

 

Where is the medical system still failing endo patients?

It is failing women at every stage of their lives, and on a devastating scale. The failures start with a lack of comprehensive sex education and continue into adulthood. Women with symptoms are still dismissed as ‘hysterical’ and ignored, and taught to doubt their own experiences.

When they finally receive a diagnosis, they are discharged again and left to figure out the next steps on their own. There are no treatment plans, no check-ups and no support for women with endometriosis. If this were a condition like diabetes, things would look very different.

What treatments have you tried? What worked, what didn’t?

What didn’t work for me: any form of synthetic hormone (the contraceptive pill, the Mirena coil, the implant), ablation, laparoscopic surgeries, and yoni steaming.

What did: body-identical progesterone, testosterone, and lymphatic drainage massage.
I have tried so many things, but nothing has fully alleviated the pain.

 

What’s not talked about enough in endo treatment?

The lack of research. There is currently no known cure for conditions like endometriosis, but there is little transparency about that. No one tells you that treatment is often trial and error, where patients become guinea pigs in a process they never consented to.

Medical professionals recommend treatments like the contraceptive pill without acknowledging that it was never designed to treat conditions like endometriosis.

 

What does a bad day with endo look like?

I usually stay in bed because my mobility completely deteriorates on bad days. I have to take painkillers and sometimes muscle relaxants just to get through. Even on strong painkillers, I struggle.

I try to distract myself with television or reading, but it’s pointless. I’ve vomited from the pain in the past, and my depression starts to creep back in. I try to remind myself that not every day looks like this, but it’s very difficult when I’m in severe pain.

 

How has it affected your body, work and routine?

I am trying to rebuild my relationship with my body. I used to detest it. I hated it for not showing up in a healthy way and for forcing me to let people down because I couldn’t commit to plans. I wanted to be healthy, but felt like I was failing.

After years of anxiety and pain, I decided to be kinder to myself. I now do things like yoga and breathing exercises, and try to remember that my body and I are doing the best we can.

I no longer fill my diary with commitments; instead, I schedule in rest. This has made a huge difference. When I have big events, like podcast recordings or meetings, I know I need to take it easy for several days afterwards. I’ve stopped forcing myself to power through and now let my body guide me. If I’m in pain, I accept that the day might need to look different, and that’s okay.

 

What made you start speaking publicly?

I remember sitting in the hospital on Christmas Eve in 2024. I had just suffered an endometriosis-related bowel obstruction and was in agony. I couldn’t go to the toilet by myself and had to use enemas and laxatives to get my bowels working again. My hair was falling out in clumps, and I couldn’t stop crying.

I reached for my phone and opened Instagram. I created a post about what was going on and how lost I felt. I don’t know what I was expecting, but the outpouring of support was overwhelmingly wonderful.

Does sharing feel heavy or purposeful?

It gives me purpose, but it can also be difficult. I’ve been the victim of trolling for speaking out about women’s health. I’m naturally very empathetic, so I find that kind of attention upsetting, but I’ve learned that people tend to dislike changemakers.

 

Why write this book now, and who is it for?

A Bloody Scandal began as an article about gynaecological neglect in the UK, USA and Australia. I set out to compare medical systems and analyse their strengths and weaknesses. However, as I gathered data and spoke to more women, I realised an article was never going to be enough to capture the systemic neglect faced by women with endometriosis.

I had worked as an academic before endometriosis forced me to quit, so I felt equipped to write something like this. This book needed to expose the systems that fail women at every stage of their lives, from their first period to menopause. I wanted women to know they aren’t alone and that, together, we can inspire change. But the systems needed to be closely examined first.

 

Was it hard to put your story into words?

There were moments that caught me completely off guard. I write about relationships in the book, and reflect on an ex-boyfriend who used to turn his phone off when I went to the hospital. He would leave me without transport home because he was annoyed that I was sick ‘again.’

At the time, I felt worthless but didn’t recognise the red flags. Writing about it, I had to step away from my laptop because I became unexpectedly tearful. I wish I’d had the courage to know I deserved better back then.

 

What do you want readers to take away?

I want them to know they’re not alone. Living with endometriosis can be incredibly lonely. There are no resources for people who desperately need them, and that’s not okay. We deserve better. I want people to feel empowered in their own journeys to demand better.

 

Early in the journey, what should someone do first?

If you suspect your period isn’t normal, see your doctor and request a referral. Do not let anyone put you on the contraceptive pill without appropriate tests first. When I was 15, I was given the pill, and I should never have been.

If your doctor dismisses your symptoms, ask to see another one, and take a chaperone for support if needed. Don’t be afraid to ask questions. You will likely need to see a gynaecologist before accessing an endometriosis specialist, but seeing a specialist can change everything.”

 

What should they push for in appointments?

Ask for blood tests and a referral to a gynaecologist. Referral lists are long, but it’s important to investigate them properly.

If you can, write a list of questions for your appointments and don’t be afraid to use it. If you’re not happy with the treatment suggestions, or lack of them, speak up and ask to see another doctor if necessary.

 

What helps most day to day?

Living day to day. If you wake up feeling unwell, be kind to yourself and rest. Don’t punish yourself for being in pain and unable to function. Tomorrow is another day.

 

What needs to change next?

The system needs rebuilding, with a chronic care and multidisciplinary model in place. Medical professionals need to be educated on what endometriosis really is, and stop approaching it as a menstrual health disease, because it is not.

I recently saw a consultant who told me endometriosis is a ‘disease of the pelvic region,’ but research shows it is a whole-body condition that must be treated as such. We need teams that look at the patient as a whole, because endometriosis can appear anywhere. I have it in my bowels, bladder and kidneys, but seeing the right specialists is almost impossible.

It is crucial that we change how we think about endometriosis. It is a whole-body, inflammatory condition.

 

MY CYCLE

• My period in 3 words: Painful, exhausting and debilitating.
• Period self-care toolkit: Hot water bottle, pain relief, comfortable pyjamas, raspberry leaf tea and a good book.
• Most underrated period hack? Hot baths with magnesium flakes (or try our magnesium-packed Soothing Suds!).
• On day 1, you'll find me: In bed and feeling very grumpy and sore.
• Scarlet pick: My rae – she is a lifesaver! I take her everywhere with me!