“We don’t know what’s wrong with you.”
[TRIGGER WARNING: Rape]
I’m Liz, and my pronouns are she/her. I was officially diagnosed in June 2024 with endometriosis and adenomyosis. My fibroids were identified earlier in this journey, but at one point I was misdiagnosed with having fibroids filling the front of my uterus—when in reality, it was the adenomyosis that was showing up on the ultrasound. It took many years and several opinions to get to a diagnosis. While I am US-based, I even went to a private health practice in London to get another opinion on why I was heavily bleeding for months at a time, with a lot of pelvic pain, lower back pain, bloating, and pain so severe down my right leg that there were times I couldn’t walk.
Symptoms & Diagnosis Journey
My symptoms with endo began when I was 12, at the start of my very first period. I would miss school every month and be in intense pain. My symptoms included leg pain radiating down my leg so badly I couldn’t walk, heavy periods and cramping, bloating, near-constant fatigue, chronic pelvic pain, and endo belly. If I was able to walk, the only way to manage these symptoms most days was through exercise—especially running.
My symptoms became even worse after I was raped and continuously harassed by my rapist. I started bleeding for months at a time with golf ball-sized clots, along with all the other symptoms mentioned above.
It took several different doctors to get to the root of what was going on; many would throw their hands up and say, “Well, your iron is really low, but we don’t know what’s wrong with you.” I was even told I would need a hysterectomy, which I knew wasn’t right for me—and I refused that option.
It wasn’t until I saw an endometriosis specialist that I was finally diagnosed based on an MRI—an MRI that a surgeon at a different hospital had previously reviewed and missed entirely.
How Being Queer Impacted My Experience with Endo & Healthcare
There are different microaggressions within the healthcare system that have floored me. I was once given a pregnancy test without my consent, even though I told them repeatedly that my partner was a woman and that I did not want one.
Because I present as high femme, I got the sense that some doctors assumed I was straight—they acted surprised when I said I was with a woman. One even asked why I needed an IUD since my partner was a woman.
There’s also a heteronormative bias baked into a lot of endo literature. I was asked if sex was painful, but what was really being asked was if penetrative—specifically heterosexual—sex was painful.
After surgery, I was told in my written post-op instructions not to insert anything into my vagina and/or have sex for two weeks. Seeing those two things coupled like that was a clear sign to me that the person who wrote it had heterosexual sex in mind—and was probably male.
The Emotional & Physical Toll
Extraordinary! The progesterone I had to take before my surgery made me very angry, very quickly. I didn’t realize this was a side effect, and it affected both me and those around me.
I became deeply depressed because I didn’t understand what was happening to me—on top of the anxiety I already had leading up to surgery.
Post-surgery, recovery took longer than expected and worsened my depression. I felt so sick most days that I lost my appetite, and the pain medication gave me a stomach ulcer, requiring an emergency ultrasound.
A close friend who also has endo was incredibly supportive, answering my endless questions with patience and love. But overall, I felt very isolated, trying to understand what this diagnosis meant for my life.
My Surgery Experience
My surgery was extensive. They performed laparoscopic surgery for the endo and treated the fibroids and adenomyosis transvaginally—eight procedures in one surgery.
I was told I would need one month to recover, but I actually needed at least two months off work.
There were moments early in recovery when I questioned whether I should have gone through with it. But ultimately, I’m satisfied with my decision and would do it all again.
I no longer get periods (whoo-hoo!), and some of my pain has gone away. However, I now have new pain—like muscle spasms—that needs further treatment.
It took about four months post-surgery before I could exercise the way I wanted. I started gently with yoga and Pilates. Running is my therapy and passion, so not having that outlet was incredibly difficult.
I still have follow-ups and may need more surgery, but for now, I’m focusing on what I can control and enjoy in the present.
My Support Systems
My chosen family, a few relatives, and my child were incredibly supportive during my recovery—and most still are.
My therapist, surgeon, and primary care physician were also amazing. They guided me through some of my darkest moments.
Once I felt physically better post-surgery, I decided to train for a marathon to bring structure and control back into my life. I trained for three months, and my running community—especially my queer running group, the East Bay Front Runners—was incredibly supportive.
In March, I did a “5k a Day for Endo” campaign to raise awareness for endometriosis and support others living with it. I’m planning a “5k a Day for Fibroids” campaign in July to raise money for the Fibroid Foundation.
And the endo community I found on Instagram has been amazing—I no longer feel alone in this battle.
Advice for Other Queer Folks Navigating Endo (& Healthcare in General)
Your pain should never be dismissed, and I would always try to seek out an endometriosis specialist ASAP. There are only about 100 of them in the US, so this may be hard to find. Get that MRI, advocate fully for yourself. I would seek out surgeons that do excision surgery and are queer friendly which you can sometimes find in doctor reviews or get a sense of who they are by looking at their peer-reviewed papers. See if they’ve written about diversity topics for endometriosis, pelvic pain, or related conditions.
➡️ Follow Liz’s journey @faewarrior913.
Liz
