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

Extremely lonely at age of 14 when symptoms started and I had no support. I used to even get detentions at school for not being active enough in PE when I was in agony.

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

It took 13 years to get diagnosed. No GP believed me. I ended up paying privately to have a consultation with a specialist. GP’s told me loads of insulting things throughout this period. Like my periods wouldn’t be painful if I gained weight or it was just normal and I needed to get used to it.

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

It was such a relief to know it wasn’t all just in my head and that the doctors were wrong.

Do you experience endometriosis alongside any other health conditions? If so, how do they affect one another?

Hashimotos, ibs-d, chronic migraines, fibromyalgia, chronic fatigue – all of these symptoms are connected to endometriosis. It makes it extremely difficult to manage them all.

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

It affects me every single day. It has caused all of these other health problems. I struggle working full time.

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

It is one of the most painful conditions and it can be difficult doing things that other people don’t have issues with.

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

Good days still mean pelvic pain and bladder pressure.

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

Yes I have to cancel plans when it is really bad. I also struggle working.

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

Yes I think my career has been affected as a result of my health and I can’t afford to go private for my healthcare. Waiting lists under NHS are extremely long.

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

Terrible – doctors constantly dismissed and did not believe me for 13 years.

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

Surgery did not work or change my symptoms. Dienogest has helped but still I have daily pelvic pain but no periods. Contraceptives causes too many side effects.

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

Difficult as no one understands and they still think it is just a bad period when it causes so many other symptoms affecting the whole body.

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

Yes throughout

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

I have being suicidal in particular when I was younger

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

It has affected my confidence

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

Yes – they don’t understand

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

Yes – it can be painful

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

It’s difficult. I tried to conceive for a bit but it was too much having periods and PMDD

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

No

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?

Online only

How has your relationship with endometriosis changed over time?

Yes symptoms have changed throughout the years

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

It’s unacceptable – they still fund more for male conditions which don’t cause as much pain – erectile dysfunction being one of them

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

It needs to be known more that it affects the whole body and isn’t just a bad period

What would you like more people to understand about endometriosis?

That it affects women throughout the month, every single day, every part of the body can be affected

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

I wish there was a cure so I don’t have more conditions that come as a result or have to have more surgery