My Story: Diagnosis Endometriosis

Stage 2, slow-growing for years.

I knew when my uterine biopsy hurt as much as the intense pain of getting an IUD inserted in my early 20s, that the result of that biopsy may not be good. Screaming and crying from discomfort during the procedure generally isn’t a good sign of what’s to come.

My doctor confirmed as much, saying that most patients who do have endometriosis can experience significant pain during their Receptiva biopsy.

The biopsy itself doesn’t diagnose you with endometriosis, it simply tells how you inflamed the cells in your uterine lining are, and you take that as suggestive that an endometriosis diagnosis may follow. Out of a 1-4 score, my results showed inflammation above a 3.

---

^star of the pelvic ultrasound

---

The only way to truly confirm endometriosis? Laparoscopic surgery. There is no actual test currently available for endometriosis. Surgery is the only way to confirm diagnosis.

So, how did I get here - at 38, recovering from pelvic excision surgery and a surprise endometriosis diagnosis I never saw coming?

My symptoms began a decade ago, but didn’t think when I experienced chronic full-body fatigue for years, always-on lower back pain, and digestive issues that I had a poorly studied, chronic inflammatory disease without a cure. I thought it was because of other incidents and illnesses.

At 30, I had vitamin deficiencies that were so bad I ended up starting Love Wellness out of our need for better women’s care products. I had a severe case of mono at 32 after suffering a TBI (a swinging kitchen door fell off its hinge onto my head at a restaurant in Chinatown late one night out with friends) and assumed the fatigue lingered from that accident and subsequent EBV illness. I have a slightly herniated disk in my lower spine and in my neck from a childhood car accident. I’ve had COVID 4 times. My always-on symptoms, to me, were explainable. I figured I was simply a sometimes unlucky woman in the low-grade health issues department. Or low-grade because everyone else treated them as if they didn’t matter much, and that sucking it up was always the right thing to do.

In addition to the seemingly unconnected symptoms mentioned, I did have terrible period cramps but not until the last year or so. Within that more recent period of time, my cramps crippled me to the ground everywhere from the pickle ball court with my fiancé to my office, where I’d quietly cry and gasp through the sharpness, my back turned against the glass, Love Wellness team sitting on the other side. I assumed I had a cyst that was acting up. Ultrasounds had told me I had had a few before. Nothing serious, everyone gets them, suck it up.

Another sign, but one I only understood in the context of the chronic disease recently: at 33, my AMH levels were pretty low. That in itself is a sign of endometriosis as it can affect fertility in many ways, but at that point the dots weren’t being connected.

At 38 when ready to start a family, my doctor (Dr. Sheeva Talebian at CCRM) suggested a uterine biopsy before taking any further steps to screen for any issues (like endometriosis) that could prevent a pregnancy. At my age and with my health history, that’s the smart thing to do; the biopsy was one item on a long list of regular tests and scans.

Endometriosis can affect fertility (everything from egg quality, embryo quality, to your ability to get pregnant and/or carry to term), but I couldn’t imagine a world in which I was suffering from it. I didn’t have too many of the “classic” signs of endometriosis, so in what universe would I ever connect the back pain and fatigue I experienced for years to this disease? Sure my cramps had gotten bad, but being a woman means pain, so suck it up.

Turns out I was suffering from it, of course. And I will forever, on a spectrum of feeling okay to really bad. It never really goes away, and cannot be cured.

Excision surgery (removing endometriosis wherever it has spread in the pelvis and bowels) can be an incredible symptom reliever for years, but doesn’t provide permanent or lasting results. Most women end up on some type of hormone treatment or undergo a hysterectomy in their attempts to manage the chronic disease long-term. One would think a hysterectomy would cure endo, but it does not.

My excision surgeon, Dr. Farr Nezhat, performed my surgery the day before Valentine’s Day, removing endometriosis on both sides of my pelvic wall, the back of my uterus, along with 6 uterine fibroids and my appendix. The pain I felt when I woke up was excruciating. I couldn’t use my abdomen muscles to sit up at all. Full reliance on Dom, god bless him. In the hospital recovery room he gave me small sips of water and sweetly slipped Thin Mints into my mouth one by one, walking me steady to the bathroom with every attempt I made to pee.

Recovery has been significantly harder and longer than I anticipated. I’m a hyper independent person, but the pain of this procedure has humbled me into accepting help without resistance. More than 14 days later, I still feel very sharp pain in my lower right abdominal area where many fibroids were removed and I need some help getting up here and there.

The benefits I’ve already experienced within days of the procedure? My lower back pain has vanished. I’m talking gone gone. My 9:30pm bedtime? It’s 11:30pm now. I cannot put myself down before then. Tired during the day? Nope. Not anymore. I feel young again???? Or maybe this is what it’s like to simply feel normal. After so many years of the bad, I had forgotten what normal feels like.

My go forward plan?

Heal. Pray my symptoms don’t come back. Spread awareness. Share my story. Do research. Educate myself. Educate others. Watch for signs of “its” return. Hope it never triggers ovarian cancer in my body (my maternal grandmother died from ovarian cancer and my diagnosis has my family wondering if she too suffered from lifelong, undiagnosed endometriosis that ultimately turned “on” ovarian cancer in her body).

My doctor told me at my post-op appointment that women with endometriosis have double the risk of ovarian cancer than those without endo. There are no screenings for this type of cancer. You simply remain vigilant, trying to stay clued into changes in your health while stay on top of doctors visits and ultrasounds of the pelvic area, looking for abnormalities.

At this point I’m still working to understand what this all means for me, while being overwhelmingly grateful my medical team screened for endometriosis, confirmed it with surgery, and have treated it as best they can for now. They say it can take a decade for a diagnosis of endometriosis for most women. In my case that timing has been pretty spot on.

---

The Silent Epidemic: How Endometriosis Goes Undiagnosed

Endometriosis is far more common than many realize, affecting approximately 1 in 10 women and people assigned female at birth of reproductive age. That’s around 190 million people globally and over 6.5 million in the U.S. alone. Yet, despite its prevalence, the condition is widely misunderstood, often dismissed, and significantly underdiagnosed.

One of the biggest challenges with endometriosis is the delay in diagnosis, which can take an average of 7–10 years. Many people spend years seeking answers, only to be told their pain is "normal" or "just bad periods." Others, like me, may not experience the hallmark symptom of debilitating cramps and instead have silent endometriosis—a version of the disease that presents with minimal or atypical symptoms, making it even harder to detect.

Silent endometriosis can have profound effects on fertility, inflammation, and overall health, yet it’s often only discovered during procedures like fertility evaluations, laparoscopies, or uterine biopsies. This means countless individuals are walking around with endometriosis, unaware of how it may be impacting their bodies. The lack of awareness and research funding leaves far too many without the care and support they need.

If endometriosis is this common, why is it still so hard to diagnose and treat? The answer lies in systemic gaps in women’s healthcare—something we must continue to push to change.

---