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

I wasn’t aware of anything being wrong because I had been told by doctors that I was fine and they didn’t see anything wrong so there was nothing they could do. For a really long time I thought my periods were normal. And it isn’t like we’re allowed to talk about menstruation out loud. We keep it quiet, so I didn’t know my experience wasn’t normal.

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

I was diagnosed in my mid 30s. Once I found a doctor who listened and took me seriously, the journey to surgery went quickly. First, my doctor did a vaginal exam. She said nothing looked abnormal, but ordered an ultrasound anyway. The ultrasound showed what they strongly believed to be several chocolate cysts on each ovary. They ordered an ovarian cancer blood test immediately after. My results were higher than normal on that blood test. They recommended surgery immediately. The surgeon removed all he could and tested everything, which came back positive for endometriosis.

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

All I felt was validation.

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

Every single day I have pain. Not one day goes by where I do not experience any pain. I am bloated most days. A few years after my surgery I was diagnosed with may thurner syndrome. A few times a month that flares up with my endometriosis.

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

For me, it is steady and constant pain. It is exhausting. I’m tired. Tired from pain and constantly trying to manage pain. I diet and exercise. I get acupuncture. All of that keeps things in check but if I miss acupuncture or mess up with my diet even once, I feel like I am having to recover.

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

I have a few a month. A good day for me is having enough energy to complete a 20 minute exercise and take a walk in the same day. Or a good day can be a day without severe bloat. Bloating is very painful for me. Most days, I can’t leave my pants buttoned because the pressure of clothing is too much. The only relief from the bloating is to lie flat on my back and not move.

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

I don’t feel like doing anything. I cancel plans sometimes because if fatigue.

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

I had good health insurance when I had surgery and I am grateful. If I hadn’t, I probably wouldn’t have been able to have the surgery that diagnosed me. I am now getting to the point where I may need another surgery, but I’ve held off because I’m not sure my insurance will cover it.

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

Most doctors do not understand endometriosis. My primary care doctor thought if you have surgery once to remove it, you wouldn’t need it again. She acted like it wouldn’t grow back. I had one doctor tell me getting pregnant cleared it up. And another say a hysterectomy would cure it. None of that seems to be true. None of the doctors I have seen are on the same page, and they all seem to have different opinions about endometriosis.

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

I had surgery. They removed endo from my colon, bladder and ovaries. I’ve met with nutritionists, and acupuncturists. Diet and acupuncture have helped me manage the pain, but nothing fully helps.

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

I’ve been told by several doctors “you look great!” And they act like because I look fine, I’m not experiencing pain and discomfort all the time.

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

All the time. Every appointment until the doctor who ordered my ultrasound.

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

It’s heavy. And now, I’m still having pain but no imaging has detected endometriosis, like the last time, and I feel crazy. Like, am I making this up? Is this pain real?

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

I’m just disappointed. I can’t be as active as I want to be. I feel a little let down.

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

Yes, it’s too painful to have regularly.

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

I don’t want children. I am on continuous birth control to suppress menstruation and the thought of coming off of it and having a period is unimaginable to me. I am leaning more towards having a hysterectomy so I won’t have to take pills to suppress anything. But I am no longer interested in trying to have a child. I don’t want to put my body through that – pregnancy or being off of birth control and menstruating while trying to get pregnant.

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

Acupuncture

How has your relationship with endometriosis changed over time?

I’m inching towards defeat. At first, I felt I was managing it and I could handle it, but today, with pain every day, I’m feeling defeated.

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

They don’t.

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

More talk about it. People don’t know how endometriosis works. People don’t know that it grows all over the body. People don’t know that it is a problem outside of menstruation.

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

More options for treatment.