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

I’ve always had really heavy painful periods, prompting my mum to put me on the combined pill at age 12 

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

I spent my whole life believing it was just normal to have heavy painful periods when one day I had severe pain and bloating, a cyst had ruptured on my ovary since then I went through so many scans, smears, mri’s etc I also had CIN 3 cells removed recently and been told they will discuss surgery once that was dealt with but now it’s just the waiting.

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

Relief that it wasn’t just all in my head

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

Fatigue and exhaustion, anxiety over the slightest twinge in case it develops into a flare up, tightness of the muscles, dull ache in stomach, pelvis, bottom, legs. Sickness, irregular bowel movements (too much or too little)

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

Absolutely debilitating, the pain is relentless

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

I have good days and I try to overcompensate for the things I miss on the bad days which then normally just leads to exhaustion and flare up

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

I’ve had to cancel plans last minute, I have anxiety thinking of future plans and not knowing if I can make it, makes me feel useless and such a let down, I overthink and become anxious that my friends just think I’m faking it or they are bored of hearing it. I have missed many days at work luckily my employer is very understanding but loss of earnings is a frustration.

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

Loss of earnings

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

Can’t fault, appears to be much more understanding and compassion

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

I was prescribed Nefopam which made me violently sick, I was then given anti-sickness to take along side, they don’t touch the sides sometimes and I am unable to take them and work

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

Lonely and frustrating

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

Yes

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

During flare ups when the pain is at its worse it can be very overwhelming, I have feelings of anxiety and depression, feelings of not being good enough or a burden on my partner friends and employers

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

I have put on weight because maintaining exercise is difficult

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

I have a good support system around me luckily but it’s my own thoughts towards it, again feeling like a burden

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

Not as yet when it’s a full on flare up nothing you do can help you cope it’s hard to focus on anything but the pain

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

My partner

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

Yes

How has your relationship with endometriosis changed over time?

I hate it more and more as time goes on

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

I don’t think it is prioritised enough due to a lack of funding and awareness of the condition

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

I believe things are changing for the better lots more media coverage, documentaries etc

What would you like more people to understand about endometriosis?

That it isn’t just a bad belly ache .. it’s every fibre of you’re body stinging burning crunching aching tightening and it’s exhausting

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

I hope for a hysterectomy my fear is that they don’t agree and continue with surgeries