10/11/2026
I’m continuing to share my story to raise awareness of the millions of women living with endometriosis, many of whom suffer alone and in silence, sometimes for years before receiving the validation of a diagnosis.
Obliterated. That’s the word my surgeon used to describe the inside of my pelvis last week.
After choosing not to pursue any more rounds of IVF, it was finally time to undergo a surgery I’ve known I needed for years but had continued to delay in the hope that I would get pregnant.
It’s been only three years since my last endometriosis surgery, but I couldn’t have imagined the extent of what my surgeon would find this time.
The endometriosis wasn’t just more widespread. It was severe and incredibly inflammatory. Years of disease and scar tissue had caused several of my organs to become stuck together and pulled out of their normal positions. One of my ovaries was stuck against my pelvic wall, and some of my organs weren’t even visible because they were hidden under so much endo.
My surgeon (Dr. Karina Hoan) was incredible. She was able to delicately remove most of the endometriosis, free several of my organs, remove a severely damaged fallopian tube, and preserve most of the o***y that had been badly affected and overtaken by the disease. But some of the endo was on organs where removing it would have been too risky.
I knew my endometriosis had returned when my fertility doctor found an endometrioma (endo cyst) on the same o***y just a year after my first surgery. But I had no idea this was what had been happening inside my body while I was trying so hard to get pregnant through fertility treatments these last few years.
For those unfamiliar, endometriosis is a disease in which tissue similar to the lining of the uterus grows outside the uterus. There’s no clear explanation for why it develops, and it affects about 1 in 10 women of reproductive age (according to the WHO).
What has been especially maddening and deeply sad is realizing how difficult it can be to know the full extent of this disease without actually doing surgery. Imaging can identify only a few forms of endometriosis like on the ovaries, but otherwise there’s no way to diagnose it without surgery.
It’s difficult now, with hindsight, to think about spending the last three years of my fertility lifespan trying so desperately to find success while my pelvis looked like a battlefield. I’ll never know what role the disease played in our IVF outcomes or whether doing things differently or in a different order would have changed anything. But knowing now how advanced this disease had become is so difficult to process.
Endometriosis still takes far too long to diagnose. The WHO says the average time to diagnosis is currently between 4 and 12 years. It isn’t simply “bad periods.”
It can look like debilitating menstrual cramps. Chronic pelvic or lower-back pain. Pain during or after s*x. Pain with bowel movements or urination. Fatigue. Infertility. Or, sometimes, surprisingly few symptoms at all.
It can cause inflammation and scar tissue severe enough to make organs stick together. It can affect the ovaries and fallopian tubes, but also the bowel, bladder, and ureters (like in my case). In rare cases, endometriosis has even been reported outside the pelvis, including in the lungs and brain.
I’m at a loss sometimes for how much this disease takes from people: years of pain and lost energy, opportunities, fertility, and quality of life.
And beyond that, I struggle to understand how, as a society, we still don’t treat endometriosis like the major human health issue it is.
A women’s health issue should be enough.
But endometriosis is also a chronic inflammatory disease capable of affecting multiple organ systems. We need better research, better tools for diagnosis, more knowledgeable providers, and more options for treatment.
If you identity with any of the symptoms I listed, talk to a provider who understands endometriosis.
And if you’re living with this disease already, please know you’re not alone. I wish for you healing and peace in a journey that has likely taken so much.
Endometriosis has taken so much from me, and so many others, and I wish for a day when women can suffer less.
