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

My first memory of starting my period at 12 was my step mom telling my dad that “she’s started her period with avengance”. I didn’t realise it at the time but that was the first landmark in a long and frustrating journey.

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

I was only diagnosed because I had seen every consultant at the hospital and their answer to any problem I had (fertility, pain, bleeding, pain etc) was hormones. After 9 years and a scheduled uterine ablation, I demanded the laparoscopic and refused the ablation until the lap had been done. Low and behold, I was riddled with endo. And still gaslit, what that surgeon diagnosed as stage 2 turned out to be ‘obliterative’ requiring many more surgeries and trauma.

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

Validating.

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

I can’t walk most days, it’s in my spinal nerves. I am 37 stuck in the broken body of a 60 year old. Pain is 8 out of 10 or more every day. And I am restricted from doing so many things with my life. I feel trapped.

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

Debilitating. Petrifying. Soul destroying. Excruciating.

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

The ability to be able to get up and dressed. The ability to be able to wipe my own backside. The ability to be broken and still study and be a carer.

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

My endometriosis created my study path. I am a biomedical student because I want to research endometriosis, improve diagnostics and reduce diagnosis times. I can’t control the future, but I can arm myself ready for it

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

I cant work because of endo and massively affects my family’s lifestyle.

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

Poor. The medical world needs to be more educated. There are too many women and not enough specialists, and where there are, are only available through private healthcare and is not accessible to the majority. Healthcare is a privilege most of us cannot afford.

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

I’ve tried them all. The only relief i have found over the years is the lack of bleeding following a hysterectomy. But other than that, no medication has reduced my symptoms.

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

I’ve struggled to stay living.

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

All the time, even now after 20 years, 3 failed surgeries, hysterectomy, bowel resection and another planned.

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

Deafening. Or silent. Either. Or both.

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

I hate it. It’s ripped away everything that made me a woman. And left a broken shell of a body.

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

My husband is the best. He’s saved me so many times. We’ve been together for nearly 15 years and been through the very worst of the worst and still he holds me up, even when he’s struggling himself. He is the definition of selfless. He is my hero.

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

Absolutely. Surgery, pain, various cycles of menopause has impacted my sex life. But again, I’m treated with patience and I’m grateful for that.

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

It was heartbreaking. But I already have two daughters so Im happy about that.

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

Cannabis. Real friends. Music. A focus. And good painkillers.

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

My husband has been the only one to support my journey. Mental health services have left a lot to be desired. I’ve lost friends and jobs and missed out on so many important things but the constant is my family. My family is my medicine.

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

Hit and miss. Generally people want diagnosing or want a success story, neither of which is ideal, or obtainable for many of us.

How has your relationship with endometriosis changed over time?

She dwells within me, but I have the reins.

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

Funding funding funding!! And more women in science!

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

It’s getting there slowly however it’s still filled with misogyny.

What would you like more people to understand about endometriosis?

At its worst it presents itself like a cancer. However it cannot be treated. It cannot be cured.

Also, you can’t “have had” endometriosis! The amount of people I come across that say they had it or know someone who had it. It’s lifelong. And you can’t hide from it.

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

I’m scared ill give up.

Is there anything else you’d like to share?

More women in science!