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

Always being in pain and having unbearable periods, I became an alcoholic because it was the only time I didn’t feel anything was when I was drunk, also was using codeine like it was candy.

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

I was diagnosed in 2020…after 10 different doctors all telling me I was stressed or crazy, I was treated like a junkie trying to score pain pills, trying all different meds, no one took me seriously.

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

I felt relieved, I knew I wasn’t crazy.

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

Exhaustion, pain everywhere and having to limit my daily activities.

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

It makes being on my feet difficult, always aches and pains, constantly trying different birth controls, I feel like a human guinea pig sometimes.

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

Not being in pain sometimes, just dealing with fatigue and exhaustion.

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

It makes being on my feet for hours difficult, but I do have some different medications that help now for a bit.

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

Yes, I can’t afford specialist appointments and it feels like in order to live a normal life with it I’ll eventu have to become a stoner.

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

Ridiculous.many male doctors are either uneducated on the illness or think I am nuts, or trying to score meds, I am tired of feeling like a junkie trying to score pain meds.specialists are too expensive.

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

Still on a years wait list for Laparoscopic surgery. Some medications and birth controls they have put me on have seriously damaged my mental health at times.

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

Frustrating! Alot of people think I am lazy but I am just exhausted and trying not to cause more pain By overdoing it.

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

Too many times, but it has made me advocate for myself and has made me take no shit from doctors.

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

Feels like it’s running my life, so you can imagine the impacts.

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

I hate my body because of it.

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

It has made being in a relationship difficult.intamacy is difficult.

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

Yes, big time. Birth control for the endo has killed my libido and sex cam be painful sometimes.

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

I don’t think I am having kids and even if I did I don’t think I can have them.

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

Vitamins.

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

Nope, it’s all me.

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

Yes and it’s nice to know I am not the only one who feels like it’s running our lives.

How has your relationship with endometriosis changed over time?

Frustrating, constantly trying new things, trial and error and repeat

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

It is a very rare chance you find a doctor who knows what there doing or who can help you.

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

I wish it was recognised as a disability because it is fucking debilitating.

What would you like more people to understand about endometriosis?

We may look fine but alot of us really struggle to want to stay alive.

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

I hope there is less doctors who are uneducated about it, I hope I am not seen as a junkie.

Is there anything else you’d like to share?

God I wish someone would figure out how to get rid of the exhaustion and back pain.i wish marijuana was legal so we would have more access to the treatments it can offer, like marijuana infused lube .