At the Mercy of the System

May 14.

The day I was scheduled to have my first Endometriosis excision surgery. Unfortunately, like many women in this country, I’ve found myself at the mercy of the system.

Let’s start from the beginning.

Several months ago, I met with Dr. Camran Nezhat — one of the most experienced Endometriosis specialists in the world and a pioneer in laparoscopic surgery. After months of severe intestinal issues (you can read more about that here), Sean decided it was time for me to see someone in California who could help us understand what was really going on.

Before this, I had seen multiple doctors in Connecticut who gave me the standard runaround:

“Some women just have really bad cramps.”

“Some women have a lower pain tolerance.”

“Get pregnant — it can help symptoms.”

“Have you considered ablation?”

The list goes on. And on. And on.

I was connected to Dr. Nezhat through Sean’s father — my soon-to-be father-in-law, John — a widely respected vascular surgeon at Stanford for over 35 years before recently retiring. Funny enough, John worked alongside Dr. Nezhat during his early years at Stanford, back when many doctors considered his methods radical and overly aggressive.

Fast forward to today, and the Endometriosis community is deeply grateful for the work Dr. Nezhat pioneered.

When I met with him, we started by talking about John, the early days at Stanford, and how grateful he was for John’s support throughout his career. Then we got into my history and symptoms before moving into a transvaginal ultrasound.

That’s when he found Endometrial tissue heavily lining my colon.

Typically, Endometriosis lesions are so small they can only be confirmed through laparoscopic surgery. Mine had progressed enough that he could see it with a transvaginal ultrasound wand.

The next day, I received my report: Stage 3/4 Endometriosis. Suspected involvement of the ovaries, cervix, intestine, and bladder. Recommended treatment: excision surgery with possible hysterectomy and appendix removal.

Full stop. Hysterectomy? We’ll revisit that emotional spiral another day.

I can’t deny that I left that appointment struggling to see through blurry vision on the drive home to Sean. Emotions I didn’t even realize I had buried came flooding out all at once — like a dam finally breaking after a heavy rainfall. Cathartic? Absolutely. But I wasn’t prepared for the emotions that followed afterward.

It’s easy to be labeled dramatic when you’ve never had an issue expressing emotion. Growing up, I carried the nickname “Moana” (pronounced: moan-ugh) because apparently my sensitivity was just a little too much for everyone around me.

As I’ve gotten older, people say I wear my heart on my sleeve. I say what I feel, mean what I say, and oftentimes cry at a commercial because it tugs on those sensitive strings. 

Why does this matter? Because it directly shaped how people responded to my Endometriosis. The people closest to you start assuming you’re overdramatizing things because “Moana” is just sensitive. Period pain? Get over it. We all have cramps.

I can’t count the number of times I was guilt-tripped into going out because “every woman menstruates,” or became the topic of conversation because I skipped something due to pain that was genuinely unbearable. Did I want to miss the pedal tour at my sister’s Mama Mia themed bachelorette party? Of course not. Instead my uterus said, “here we go again”, because unfortunately, Endometriosis doesn’t care if “you can dance, you can jive” or you’re “having the time of your life.”

So when the number one Endometriosis specialist in the world finally validated what I had been experiencing, I didn’t just feel heard…I felt angry. Angry for the years I questioned myself. Angry for the pain I normalized. Angry for every time I convinced myself I was simply being dramatic because that’s what everyone around me seemed to believe.

And honestly? Disappointed too.

Disappointed in the years spent doubting myself. Disappointed by the doctors who minimized my symptoms. Disappointed by how normalized women’s pain has become. 

Disappointed by the glaring lack of research, funding, and urgency surrounding women’s health issues - especially for a disease that affects millions of women worldwide.

Did you know women weren’t required in U.S.clinical research until 1993?

Or that in 2025, the Trump administration instructed NIH staff not to approve grants using the word “women”, putting research surrounding Endometriosis, fibroids, and menopause, and other women’s health conditions directly at risk.

To date, diseases affecting women receive significantly less NIH funding than diseases primarily affecting men. More funding goes into prostate cancer research than ovarian, cervical, and uterine cancers combined. And if that somehow isn’t frustrating enough, erectile dysfunction research receives nearly six times more funding than Endometriosis.

Someone please make it make sense. 

And unfortunately, the lack of urgency surrounding women’s health doesn’t stop at research funding. Because what I wasn’t prepared for was realizing that getting a diagnosis was only half the battle. In the United States healthcare system, finally having answers doesn’t necessarily mean you get access to treatment.

Which brings me to today: May 14. 

Unfortunately, no I’m not getting the surgery today. 

And no, it hasn’t been rescheduled. 

Why?

Although I’m currently covered under Medi-Cal, there are only a limited number of insurance plans accepted in collaboration with Dr. Nezhat’s office and the hospital where the procedure would take place.

Technically, yes, I could enroll in a private insurance plan.

But at nearly $800 a month with a $10,000 deductible, how exactly is that considered accessible healthcare? Especially when the excision surgery itself costs roughly $25,000 out of pocket.

And here’s the real kicker: the procedure is considered elective.

Elective.

Not medically necessary. Not urgent. Elective.

Despite the fact that Endometriosis can infiltrate organs, impact fertility, damage the bladder and intestines, and dramatically affect someone’s quality of life. So naturally, it makes total sense that research for erectile dysfunction receives significantly more funding than Endometriosis.

Because apparently in America, a boner is considered a medical priority while a disease that can fuse your organs together is negotiable.

So now we wait.

Sean and I filed for a domestic partnership so I can be added to his insurance while we wait for our wedding next year. Romantic, right?

And until the state processes the paperwork, the insurance approves the change, and the system decides I’m worthy of treatment, my surgery remains unscheduled. Which means that today, May 14, wasn’t a surgery date after all. It was just another reminder that in America, access to healthcare often depends less on medical necessity and more on luck, paperwork, and privilege.