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

I knew something was wrong when I turned 13. I used to have to leave school because I was in such bad pain that I couldn’t stay. It happened around the same time every month. The school nurse thought I was lying until I’d have a fever too and I’d be sweating profusely.

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

I was finally diagnosed in 2018. They only found it because I was having surgery for fibroids. For years, no health care professional believed me. I was made to feel like I was crazy. One doctor told me I must be from another planet. Another gynecologist told me I was too skinny to have endo. I saw every kind of specialist and they all assumed I was mentally unstable.

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

I remember right after my fibroid surgery my surgeon walked in to tell me. I remember breaking down. I said finally…I knew there was something wrong. I had so many mixed emotions. I felt sad because I missed out on so many occasions, lost relationships, friendships, time, jobs. I was angry because it took so long and nobody believed me. I felt relieved.

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

Unfortunately, the older I get the worse the endo has gotten. I am no longer in pain just during my period. I am in pain on a daily basis. I am very lethargic because my body is constantly fighting. The pain is also in random places in my body. Then there is the roller coaster of hormonal changes which has it’s own symptoms. I get back pain, leg pain, migraines, pain urinating, issues sleeping, sensitivity to food, mood swings, hormonal acne. I could keep going. Every day is a different symptom.

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

Out of a 10 I would say it can be a 12. I don’t really know what it’s like to not be in pain anymore.

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

I get a few days out of month if I’m lucky. I feel some energy and I’m able to get some things done before the symptoms start again.

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

Endo has controlled my life since I turned 13. It took me 8 years to get my college degree because I couldn’t make it to class or barely do the work. I lost so many jobs and I can’t follow through with most plans. It’s very difficult when you don’t know how you’ll feel the next day.

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

I have been trying to apply for new jobs but it’s been very hard. Luckily, I have a good family support system.

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

Doctors need more education on endo. Most gynecologists know nothing about it and they have no idea how severe it is.

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

I’ve been to every type of specialist. I’ve tried hormonal pills, supplements, exercise, diet, acupuncture, yoga, therapy. Nothing has really worked.

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

When my pain is at a 12 and I can’t walk or move without hemorrhaging…when it’s so bad that my mother has to help me up because I can’t do it myself or I’m stuck on the toilet because the pain is so severe…I think about how I get through it every month. It’s a very lonely place.

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

Half of my life I’ve been dismissed. I still get dismissed about it. Most people don’t believe the severity until they see it.

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

As I said it’s a lonely place. I’m luckily I have a good therapist and psychiatrist but it’s very difficult to not hate your body and this chronic condition.

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

I sometimes struggle with not hating my body and learning to be kind to it.

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

I’ve lost many relationships because I didn’t know what was happening and intimacy was incredibly painful. I still struggle with dating. Most of my friends understand now but in the past most people thought I was a flake.

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

Endometriosis can make intimacy very painful.

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

I’m not sure that I want children. I was told that it was going to be very difficult for me.

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

Therapy has helped a lot.

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

My friends and family have been very supportive.

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

I follow some groups on Facebook. It’s validated my feelings.

How has your relationship with endometriosis changed over time?

I’ve learned to accept it and live with it.

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

It’s not a priority. It needs to be studied more and they need to make it a disability.

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

I want more studies and testing. I want more medication. I want it to be a disability. I want gynecologists to be educated on it. I want people to understand that it’s not just a bad period. It’s a condition that affects you on a daily basis.

What would you like more people to understand about endometriosis?

That it’s debilitating and painful. That just because you can’t see it doesn’t mean it isn’t there.

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

I hope they find a cure. I hope it becomes a disability.