It Took 26 Years and Countless Doctors Before Someone Told Me I Had Endometriosis

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I had my first period at 12, and it knocked me flat. The pain was immediate, intense, and nothing like what the health class pamphlets had prepared me for. I was weak, nauseous, and exhausted. But I was also 12, and everyone around me said cramps were normal. So I took some Aleve and got on with it.

That became the pattern for the next two and a half decades. Pain, medication, push through, repeat. Through high school, through college, through my career as an actor and singer and healer. The pain was always there, cycling in and out like a second heartbeat I couldn’t turn off. I just kept adjusting around it because every doctor I saw either couldn’t explain it or didn’t seem particularly interested in trying.

The Symptoms Nobody Connected

In college, I fainted in the shower from period pain. That should have been a turning point. It wasn’t. After college, I developed this bizarre sensation in my gums, like an intense need to teethe. It happened cyclically, tied to my hormones, but no doctor ever connected the two. I just added it to the growing list of things my body did that nobody could explain.

By my early 30s, I’d been through several gynecologists. None of them gave me answers. Some were sympathetic. Most were dismissive. The message was always some variation of “periods are painful for some women” or “have you tried ibuprofen?” as if I hadn’t been engineering my own painkiller strategies since middle school.

Then, in my late 30s, things escalated. I started getting my period every two weeks. I was spotting between cycles. Ovulation became painful, not just uncomfortable. Tests revealed a growing cyst on my left ovary and then another one on my right. My health was no longer something I could work around. It was taking over.

The Moment Everything Clicked

I was in rehearsal for a show when one of the other women in the cast stumbled offstage looking like she might collapse. She’d gotten her period and hadn’t been able to take her painkiller in time. When she told me she had endometriosis, something shifted in my head.

I’d heard of endometriosis before, mostly through celebrities like Amy Schumer who’d talked about it publicly. But their symptoms never sounded like mine. They talked about vomiting, GI issues, back pain, constant pain even when they weren’t on their period. I didn’t have most of that. So I’d ruled it out years ago without ever actually being tested.

But this woman, my colleague standing backstage trying to hold it together between scenes, she presented exactly like me. Same type of pain. Same reliance on painkillers as the only coping mechanism. Same years of nobody being able to tell her what was wrong.

That was the first time I seriously considered that I might have the same condition.

Finding Someone Who Actually Knew What to Look For

After the show’s contract ended, I made it my mission to find a gynecologist who could give me real answers. The one I found didn’t take long to connect the dots. She confirmed I still had both ovarian cysts, identified two small fibroids I didn’t know about, and told me she was almost certain I had endometriosis.

I sat with that for a while. Twenty-six years. That’s how long I’d been living with a diagnosable condition that nobody had diagnosed. Not because the symptoms were hidden. Because nobody thought to look.

I started researching everything I could find about endometriosis. The medical history. The treatment options. The fact that those options were extremely limited and often ineffective. I tried birth control, which is one of the standard recommendations. I’d had an IUD for two years before that, which helped somewhat. But when I was put on a low-dose estrogen pill, my blood pressure and cholesterol both spiked within two months. I had to stop immediately.

My dad, who’s a retired doctor, suggested I find an endometriosis specialist. My mom suggested I find out who Amy Schumer’s surgeon was. Social media, for once, was genuinely useful. I found the surgeon tagged in Schumer’s post-op photo. He specialized in full excision surgery, which means removing every endometrial lesion by hand through laparoscopic surgery rather than just burning them off, which is what ablation does. Ablation is cheaper and more commonly covered by insurance, but the lesions frequently grow back. Excision has the highest success rate for both symptom relief and preventing recurrence.

The Reality of Getting Treatment

Here’s the part that makes the whole situation even more frustrating. Excision surgery for endometriosis costs anywhere from $15,000 to $42,000. Most insurance plans, including mine, don’t cover it. They cover ablation, the less effective option, but not excision. So the procedure most likely to actually fix the problem is the one most women can’t afford.

I was fortunate enough to have access to the cost. I know that. And I’m aware that most women dealing with this condition don’t have that option, which is its own kind of injustice that deserves a much louder conversation than it’s currently getting.

I booked my surgery date from a dressing room backstage during a show. On June 8, 2023, I had laparoscopic excision surgery. They removed potential lesions, fibroids, and cysts. Five of the eighteen lesions they took out tested positive for endometriosis. The left ovarian cyst turned out to be a mucinous cystadenoma with calcifications, which was benign at the time but is recognized as a precursor to ovarian cancer.

That finding hit me hard. But I held onto the fact that at least it had been found and removed. We all carry potential medical vulnerabilities whether we know about them or not. Mine was now gone.

What Life Looks Like on the Other Side

The first three months after surgery were rough. Brutal period pain, terrible acne, frequent night sweats. I’d been told to expect all of that. The body needs time to recalibrate after having tissue that’s been there for decades suddenly removed.

But after those three months, things started changing in ways I hadn’t expected. The gum discomfort I’d dealt with for years practically disappeared. Symptoms I didn’t even realize were abnormal, like the amount of vaginal discharge I’d been experiencing, cleared up entirely. I didn’t know what normal felt like until I finally experienced it.

Now, approaching the anniversary of my surgery, I barely recognize my own health. I have more energy than I’ve had in years. My acne is significantly better. The night sweats are mostly gone. During my period, I take two Aleve once a day for two days. That’s it. After spending most of my life building elaborate pain management systems just to function, two pills for two days feels like a miracle.

I’ve been cyst-free since the surgery. The emotional weight of that is almost impossible to put into words. For the first time in my life, I have a confirmed clean reproductive system. I didn’t know what that felt like either.

Why I’m Telling This Story

I’m not a celebrity. I don’t have millions of followers. But I have a story that took 26 years to reach a resolution, and if even one person reads this and thinks “wait, that sounds like me,” then it was worth sharing.

Endometriosis affects an estimated one in ten women of reproductive age. The average time from symptom onset to diagnosis is seven to ten years. In my case, it was nearly three times that. The condition is chronically underdiagnosed, undertreated, and underfunded. The surgery that actually works isn’t covered by most insurance. The medical system that’s supposed to help women with this condition is, in many cases, still telling them their pain is normal.

It’s not normal. Fainting from period pain is not normal. Losing your ability to function for days every month is not normal. Being told for decades that nothing is wrong when something very clearly is wrong is not acceptable.

If you’re reading this and any of it sounds familiar, please push for answers. Find a specialist. Don’t accept “that’s just how it is” from anyone. You deserve to know what’s happening inside your own body, and you deserve treatment that actually works.

I spent 26 years not knowing. I don’t want that for anyone else.