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

I was fearful as all I knew was pain and had been ignored by many gps.

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

I was diagnosed in 2001 aged 21, it took since I was 16. I was told it was normal to be in pain and passout from blood clot loss. 1 GP female doctor took me seriously and fought to get me help.she followed this up even when I went away to university

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

Relief. My sister had diagnosis 5 years earlier.

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

Pain, bowel,bladder issues. Blood loss, headaches, leg pains. Now Im older kidney issues. Extreme tiredness. Migraines.

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

Exhausting and unpredictable. It is difficult to plan a normal life. Some days can be overwhelming. Impacts mental health to the extent I do not want to socialise.

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

It is always painful to use the toilet. A good day means I dont cry or wince going to the toilet. A good day means i have energy to undertake a normal life.

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

I have had to miss work due to pain, bleeding and numerous surgeries. It is difficult to make plans as it is unpredictable.

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

Cant afford private health insurance because of it.

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

When i was younger professionals seemed to care more. Now specialists have come across as dismissive, rude and like to blame weight, job or lifestyle.

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

5 surgeries, they work for a bit but then stop. Hormone treatments make me bleed uncontrollably. Lifestyle change made no difference. As i approach menopause i have been dismissed and yet the symptoms get worse.

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

Ive been made to feel like its in my head or Im dramatic. People do not understand how hard each day can be.

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

Yes, usually by professionals.

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

Tough. I do not wish to be social or go out.

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

I despise how I look. I am ashamed of my body.

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

My intimate life is impacted as everytime we are intimate i bleed and it hurts.

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

See above

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

We had 6 miscarriages.

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

Emotionally, it helps to know people understand what it is like.

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

My husband has supported me.

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

It helps when people understand it and do not judge you.

How has your relationship with endometriosis changed over time?

I was fearful and angry at the outset, now I am sad that female health is not as important as mens health.

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

Very few medical professionals have treated me with dignity or compassion.

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

I would like to see more understanding and compassion.

What would you like more people to understand about endometriosis?

Its not just monthly issues or a fat girl thing

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

I hope the money spent on mens health is the same as womens so there is hope for treatments that are less invasive