What was the beginning of your endometriosis journey like before you knew what was happening?
I always had extremely painful periods and ovulation, but I thought it was a part of life. When I was in my mid-thirties the pain was getting worse. I had, what I now realize was a chocolate cyst burst when I was at work. I remember taking my dinner and screaming in the back of my car for an hour. I had just come back from a leave of absence for feeling unexplainable fatigued. The chocolate cyst alone should have been diagnostic criteria, but my Nurse Practitioner dismissed my concerns. She said, “Endometriosis is hard to diagnose and the only treatment is birth control” I will never forget her. D**** **********. She eventually cost me a decade’s worth of suffering. Misinformation cost me my fertility and set me up for 5 procedures in my future. I always wonder what could have been.
When were you diagnosed, and what was your journey to getting diagnosed like?
Five years after when I should have been diagnosed (2017), I went to a new gyno. He performed a lap and removed some with laser which was probably more Idamaging but at least I had relief for a few months and more importantly, validation. He recommended excision surgery, but at the time I was making very little money because I was just out of grad school. Additionally I had terrible insurance. I didn’t have that excision surgery until 2023 when I got on my husband’s insurance (we met in late 2017 after diagnosis). In the time in between i was focusing on fertility, exploring options. The fertility center encouraged removal of my tiny fibroids but did not seem concerned with my endo history. By 2023 I was in so much pain, I found the first surgeon online who had good reviews. I immediately had excision surgery. He told me he got all of it, another piece of misinformation. 3 months later I had a large cyst removed, and more endometriosis removed. A year later it was still there and it was impacting my nerves at that point. I had to use a cane. The same surgeon encouraged a hysterectomy, saying it would essentially remove this from my life. I had that at 47. A few months later my pain returned and he dismissed it saying my body was still healing. I was going backwards with progress. By August of that year (2025) I found a gyno and fought to have another MRI. It came up in the MRI again, deep infiltrating. By that point I was done with the surgeon. I was tired of surgery and I needed a break. Plus I was out for 4 months the last school year so I didn’t want to be out again. I spent the 2025/26 school year trying to manage the pain and the complex regional pain that affected my back and at times, set off pain in my neck. I had nerve ablations on my neck to stop the pain, and one in my back to help with that pain. But I think it aggravated my nervous system more. By May, I found a new surgeon that specialized in endo and how it impacts the nerves. He told me that the previous surgeon never got into the deep infiltrating parts. He said he can do his best to remove it, but he couldn’t guarantee the nerves would get better. I appreciated his honesty. In May I had an extensive excision surgery (my 4th excision) and I am still healing. I have radically accepted that this can and will probably be a lifelong struggle. My husband recently left his job so now we are changing insurance and I am so scared for the future financial costs.
What did it feel like to finally have a name for what you were experiencing?
Validating and heartbreaking.
How does endometriosis show up in your body and daily life?
I feel daily pain in my rectum, back, and intermittent pelvic pain. My type of endo affects the cul de sac area and I also fused my bowel to other organs. I get exhausted easily. I get depressed from the hormone fluctuations and the realization that I will always deal with this and I will never have children.
How would you describe the pain or physical challenges of endometriosis?
People think you exaggerate, but at times it is an 11 on a scale of 1-10. It’s difficult to sit for long, to stand for long, intercourse is painful, and bowel movements are also painful. There is also the frequent feeling of uti’s even if you don’t have one. The emotional pain is also difficult which can then set off the physical pain.
Do you have “good days,” and if so, what do they look like?
I haven’t had a pain free day in years. Maybe good moments.
How has endometriosis affected your education, work, routines, or ability to make plans?
I work with kids as a therapist in schools. I have had to take two leaves of absence for surgeries. I am exhausted by my work, and may need to switch to private practice.
Has endometriosis had an impact on your finances or access to care?
Absolutely. Because I made little money with terrible insurance it prevented me from getting excision surgery. Now that our excellent health coverage ended, I am so scared for future costs.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
So much misinformation and invalidation. But after my history, I am finally believed. Once in a while I will still encounter a healthcare worker who doesn’t understand my pain or minimizes it. Like in my last surgery, the recovery nurse made comments like “most people go home after this but I guess you need to stay.”
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
Lupron was taken in 2017 for one month. I forgot to mention that. It was a nightmare. 20lbs gained in one month. My bones felt like they were made of iron. I was suicidal. I was supposed to complete3 months. I stopped after one month for my mental health.
What has it been like to live with a condition that often isn’t visible to others?
Difficult. I feel the need to explain myself so I over explain when really it should not be anyone’s business
Have there been times when you felt dismissed or not believed about what you were going through?
Many times I mentioned that earlier.
What has the emotional or mental side of living with endometriosis been like for you?
There are times when I feel like I can’t do this anymore. I feel like one day I will deal with this until I no longer can’t.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
I feel like there is an emptiness in my heart for the child I never got to have. I feel like I am damaged.
How has endometriosis affected your family relationships, friendships, or dating life?
My husband has been very supportive. My family as well. Thank God.
Has endometriosis had an impact on intimacy or your sexual life?
Yes. It is still painful and I often don’t even want to try which makes me feel bad for my husband and scared he will leave.
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
Too painful to write about again. I wish I had frozen my eggs, but financial limitations prevented me.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
My dog, my creativity (art, music), and lots of time on a heated blanket
Do you feel supported in your journey? Who or what has helped you most?
My husband, my family, my therapist.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
I am a part of online boards but they can be emotionally draining. I have known a few close people who have had the disease but they had improvements after surgery. I haven’t, so that has felt isolating.
How has your relationship with endometriosis changed over time?
I am accepting that I will deal with this for the rest of my life, but I haven’t forgiven my situation. I try to find purpose, and maybe my purpose is to help other women before they get to the point where this damages their life.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
There is no prioritization. We were close to having it with some bill introduced but with this administration I’m sure that has been put to the side.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
We need visibility. Would love to see a medical drama cover the experience of a woman being dismissed as med seeking while she is writhing in pain.
What would you like more people to understand about endometriosis?
The cost it takes on your life. The emptiness. The physical and mental anguish.
When you think about the future, what fears, concerns, or hopes do you have?
Not being able to afford future surgeries. Not ever enjoying intimacy, having my organs fuse together again. Finally losing the will to live. I think when my parents are gone, that thought will be more on my mind. And God forbid if my husband ever goes before me. I am not sure what the point will be.