What was the beginning of your endometriosis journey like before you knew what was happening?

I was afraid of the pain and ashamed that I couldn’t handle it because I was told it was normal. I missed out on a quarter of my schooling and many, many fun experiences.

When were you diagnosed, and what was your journey to getting diagnosed like?

I was diagnosed when I was 30, having suffered since I was 8. Being diagnosed was the start of having a plan to fix it and get better. However now I know that my body continues to suffer both from the psychological trauma but also the physical memory of having such severe pain so often.

What did it feel like to finally have a name for what you were experiencing?

It made me angry. Angry that none of the other 13 doctors I had been to see and begged for help as both a suicidal child and an intelligent young woman hadn’t even considered for a second that I needed help.

How does endometriosis show up in your body and daily life?

I am very lucky that after 6 operations and 10 years of Marvelon I no longer have the severe monthly pain. I am however left with the negative effects of CPTSD and feeling like my life from 8 to 30 was stolen from me. My muscles are constantly stiff and spasming, something I cannot recognise myself because I am so used to it. My nervous system is absolutely fucked.

How would you describe the pain or physical challenges of endometriosis?

It is like fighting for your life every single day. Until the period pain arrives and then you pray to God that you pass out or die.

Do you have “good days,” and if so, what do they look like?

Yes, on good days I look like a super model, ride my horse like a professional and feel so happy to experience a normal person’s day. Then I need a week to recover.

How has endometriosis affected your education, work, routines, or ability to make plans?

I cannot convey how much Endometriosis took over my life and everyone who cared for me. I was fully disabled, crawling to the toilet, vomiting, bleeding and pooing on the bathroom carpet and fainting in these fluids. One year my parents replaced the bathroom carpet 4 times. I missed out on a normal childhood and education. It really is very hard to discuss.

Has endometriosis had an impact on your finances or access to care?

Yes, I have never been able to get a job. I have never received care except for the private care my parents paid for.

What has your experience been like with doctors, specialists, and navigating the healthcare system?

The NHS is cruel. I was sexually abused every time I was in an NHS hospital. Private healthcare has been amazing and saved my life.

What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?

I don’t understand why the NHS for 22 years told me nothing could be done when clearly it is known that things can be done. Why not just admit that treatment is not available on the NHS but is available privately. This is one of the biggest scandals of the century.

What has it been like to live with a condition that often isn’t visible to others?

Heartbreaking.

Have there been times when you felt dismissed or not believed about what you were going through?

Absolutely. At 13 I begged my GP in tears for a hysterectomy and he laughed out loud and said “every woman has period pain”. I have struggled every time I’ve seen him since not to run him over as I am so angry.

What has the emotional or mental side of living with endometriosis been like for you?

Hell. It’s really difficult to answer these questions. I feel totally powerless to express my feelings because for so long I was told that my real feelings of severe pain were incorrect.

How has endometriosis affected your relationship with your body, identity, or sense of self over time?

I am totally disconnected from my body. I look at it in the mirror and think it’s beautiful, but I cannot feel it. I cannot feel my insides, my muscles and joints are separate to me. This has been noticed by health practitioners and boyfriends and it frustrates me beyond words that they say my muscles are stiff when my brain thinks they are relaxed. It turns out that even if you are lucky enough to get rid of this sick pain, your body will always remember it.

How has endometriosis affected your family relationships, friendships, or dating life?

My family’s world revolved around feeding me and carrying me to the toilet. Now it is less so but I do suffer all sorts of bizarre things which they help me with. My brother who has a job, wife and family is often coming over to give me water when I am too dizzy to move.

Has endometriosis had an impact on intimacy or your sexual life?

Yes. I so want an intimate partner but men say my pelvic floor will not relax and they don’t like it. It breaks my heart.

If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?

When you are an invalid, it would be cruel to bring a child into the world.

Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?

No, I am still learning. I am just grateful I do not suffer the pain now. How amazing it is to experience regular, pain-free periods.

Do you feel supported in your journey? Who or what has helped you most?

No.

Have you connected with others who have endometriosis, either online or in person? What has that experience been like?

No, it’s too difficult

How has your relationship with endometriosis changed over time?

I hate it more and more and I realise the reason for it is the pressure we put on women to work.

More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?

It doesn’t.

How do you feel endometriosis is represented in society or the media? What would you like to see change?

I’d like to see Endometriosis eradicated by the change in society’s expectations on women and by men behaving better and not causing it. I truly believe that is where it stems from. The government should pay me £1M for what the NHS have done to me.

What would you like more people to understand about endometriosis?

It can be treated. The NHS needs to stop this bullshit and admit that there are treatments available but that they don’t provide them.

When you think about the future, what fears, concerns, or hopes do you have?

It will become so bad that it will fix itself. People will eventually understand what causes it.

Is there anything else you’d like to share?

I think I need a lie down now. Thank you for your interest in Endo