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

I was 13. I passed out in the bathroom. Skipped school when on my period. I was institutionalized in a facility for “troubled teens” for five years for this behavior. I never had proper medical care. Was abused. Neglected. And developed CPSTD from extreme child abuse. I was not believed by my parents until I was 38 years old.

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

I was diagnosed when I was 18, and in college. I was finally able to go to a doctor, and diagnosed during laparoscopy. I had zero follow up after my diagnosis. I self treated with ibuprofen, birth control, and was prescribed pain killers.

Having pain relief helped me to graduate from college. We deserve pain relief. Surgery and birth control isn’t enough.

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

I don’t think it really registered as an 18 year old. Honestly, I’m not sure whether the diagnosis has helped at all since treatment options are even worse (more limited) and far more expensive now.

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

I am afraid I will lose my career. I am afraid I will lose everything. I am already losing friendships, relationships and hobbies. I have been as proactive as possible, and spend $1,500 per month on treatments that do not really help.

I remain an “optimist,” I keep trying because the fear of homelessness is very real.

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

I consider suicide frequently. I fantasize about walking into traffic. I cannot sleep. I cannot eat. My legs are heavy. I feel like I’m being eaten alive from the insides.

I have a diagnosis. I have had all the surgeries. I have done all the treatments. No one takes my pain seriously.

I cannot imagine having a romantic relationship. I cannot imagine much of a future.

I would not mind dying.

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

They are rare. I appear like a glowing sunshine of radiant kindness. I do as much as I can, because my life will fall to pieces if I don’t pretend to be normal

Occasionally.

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

I have built and life career around my illness. I have a PhD and am a professor. I am afraid that no career is suitable for endometriosis.

I would apply for disability, but endometriosis is not recognized as such: despite that it’s taken my organs, fertility, love life, hope for the future.

My greatest hope is for days when I can walk.

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

Absolutely financially destroyed. $1,500 per month on payment plans for surgeons, anesthesiologists, physical therapy (which is a joke), and non covered treatments (GLP1s, ketamine)

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

Awful. Depressing. Dismissive. Traumatic. I’m highly educated and yet I’m not heard.

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

AWFUL. Surgeries require 18 months recovery time, at minimum. It’s ruining my life. It’s ruined.

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

Horrible.

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

Everyday.

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

I am suicidal.

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

Severe body dysmorphia. I don’t trust myself or my body.

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

Destroyed them.

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

No desire for any of this.

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

Never imagined the possibility of raising a child when I’m bedridden 1-3 weeks a month.

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

Pain management.

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

No.

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

Somewhat helpful.

How has your relationship with endometriosis changed over time?

I feel like giving up. The disease changes as you get older. I wasn’t prepared for that. The change from active lesions to fibrosis is much more painful.

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

We are treated like garbage. When we don’t get pregnant or immediately respond to treatment, interest evaporates. My experience is doctors want to sell surgery. They do not care about my quality of life.

What would you like more people to understand about endometriosis?

It is extremely painful and deserves pain management.

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

I don’t fear anything, except a long life.

Is there anything else you’d like to share?

I’d rather die than live like this.