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

Although various symptoms come and go weekly, the daily chronic fatigue is relentless, feeling like I’ve been drugged nearly every morning. I spend more time thinking about wanting to just go home and lay down than anything else throughout my day.

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

When the pain is bad, it’s off the charts, but the rest of the time I am always experiencing some kind of dull ache somewhere in my body.

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

I completely lack any sense of motivation anymore. I am burning through sick days at work and keeping up with any kind of household chore feels impossible.

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

I am grateful to the doctor who diagnosed me and always had sympathy for what I’m going through, but she was not fully up to speed on any management factors outside of birth control or pregnancy (such as diet or physical therapy). Other doctors across the board seem to lack any awareness of this disease or how significantly it can impact every area of health outside the reproductive system.

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

I have been on various forms of birth control which have led to major depression, mood swings, inconsistent menses, and liver lesions. I was on lupron depot which helped for a couple months the first time I tried it. After a few years, I tried again but it no longer agreed with my body. I was made aware of a low FODMAP diet I could try, but it was too difficult to stick with. I have also had one surgery, but I can’t confidently speak to its impact one way or the other.

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

It’s embarassing to constantly need to call out of or call in late to work because of the chronic fatigue. It feels hopeless not having a cure while people just assume you’re exaggerating your symptoms.

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

Yes.

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

Overwhelming. It makes me question everything. Is everything I’m experiencing real, or are some things in my head? Is every symptom I have related to endometriosis, or could some issues be the result of some other underlying illness? I hate feeling like a hypochondriac.

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

It makes it feel impossible for me to relate to anyone anymore because I never feel well and therefore think I always come off like a debbie downer.

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

I would never want to have a child where there is a risk they could inherit this awful disease.

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

No – I really wish I could find something.

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

The doctor who diagnosed me was always sympathetic. My current specialist has taught me so much about this disease and genuinely seems to listen to everything I tell her about my experiences living with it.

How has your relationship with endometriosis changed over time?

It has gotten more stressful with the more I learn and the more my health declines.

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

I do not believe the medical community prioritizes endometriosis at all. The government needs to step up to the plate and back the medical community in finding a cure.

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

I believe there is still too much emphasis on the reproductive system aspect of this disease. It’s WAY more than a time of month issue.

What would you like more people to understand about endometriosis?

It can impact mental health just as much as physical wellbeing.

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

I hope and pray a cure is found soon. I fear that this disease will progress too far in some people where treatment becomes impossible or ignored.

Is there anything else you’d like to share?

Working from home should be covered under ADA for those with endometriosis.