A Look Inside the Endometriosis Epidemic
On October 16, 2025, President Trump announced his action plan to “Lower Costs and Expand Access to In Vitro Fertilization (IVF) and High-Quality Fertility Care.” This initiative pledges to make fertility treatments more affordable and accessible, a noble goal on its face.
But the plan’s definition of high-quality fertility care begins and ends with assisted reproductive technologies. There is no mention of addressing the underlying epidemic of reproductive dysfunction that is driving more and more couples to IVF clinics in the first place, or the broader impact of reproductive health issues women face over their lifetimes.
Exactly three months before this announcement, I had laparoscopic excision surgery for stage IV endometriosis, a disease that affects one in ten women yet remains underdiagnosed, undertreated, and often dismissed as normal pain. Endometriosis, commonly shortened to “endo,” is a chronic disease in which uterine tissue grows outside the uterus, often sticking to and disfiguring organs, causing excruciating chronic pain and often leading to infertility.
For many women, a diagnosis of endo only comes after years of infertility push doctors to dig deeper. But I had never suffered from infertility, because I’ve never even tried to have kids. I’m twenty-three years old.
Nor had I even been diagnosed with endo before the specialized surgeon put me under anesthesia, inserted guidewires into my ureters, made an incision into my abdomen, and inspected my organs with laparoscopy to find the lesions and cut them out. That’s because doctors can’t diagnose endo until they cut you open. There’s no way to see how bad your case might be until you’re on the operating table.
Most women will undergo a different, two-hour procedure: the standard of care is an ablation surgery, in which a doctor burns off surface-level tissue with no inquiry into the deeper endo adhesions. These surgeries don’t guarantee complete removal of the disease, and these women are likely to be told that they have about two years to try to conceive before they’ll be back on the table for another round of ablation.
That’s the reality of reproductive dysfunction and women’s healthcare in America—healing care takes a backseat to quick fixes and “Band-aid” solutions. It took countless happy accidents and hours of personal research for me to finally receive treatment. But most women aren’t that lucky.
Silent Suffering
For over a decade, I thought debilitating pain was normal. I thought it was something I had to endure quietly because that’s what women do. If I hadn’t pressed for answers and fought for real care, I probably would have struggled to conceive children in the future. Unfortunately, that’s a reality for 15 percent of the female population, many of whom are simply coded with “unexplained infertility” and handed a referral to a mainstream fertility clinic.
If there’s anything I’ve learned over the past two years as I’ve finally found answers, it’s that these chronic underlying reproductive conditions aren’t an issue that we can wait to solve. Millions of women are suffering from reproductive dysfunction and chronic disease, the fertility crisis is only growing, and far too few doctors and patients are receiving the education they need to address root causes and achieve authentic health.
Change at all levels of healthcare, education, and policy need to be made to meet infertility upstream and to care for the health and well-being of women at all stages of life, including before they are trying to become mothers.
Early Education and Body Literacy
Most young women in America enter college with an extremely limited understanding of how their bodies ought to be functioning. They’ll have surface-level “this is a period” and “don’t sleep around or you’ll get an STD” sex-ed programs, which won’t provide much in the way of body literacy.
I had a similar experience. I didn’t know that the symptoms I had for years weren’t normal until I was twenty years old, eight years after I first had my period. From crippling cramps, bleeding through my school uniform, and hormones that took me from depression to anxiety in a matter of minutes, I barely remember most of middle and high school. It was just a battle for survival. No one, not even my mom, knew that I was powering through my teen years, often just wishing my body would shut down if it meant the pain would stop.
I still remember my first check-up without my mom at age thirteen. The nurse asked me two questions: “When was your last period?” and “Are you sexually active?” When I said no to the latter question, I received a smile and confirmation that if that changed, I could call for a prescription for birth control—they wouldn’t need to share the details with my mom. Doctors didn’t ask a single question about my pain, mood swings, or menstrual cycles. If I wasn’t sexually active, then my reproductive health didn’t matter.
The reason for this discrepancy in healthcare is simple: those writing the medical standards are the same people making money off women perpetually on hormonal birth control—and the same ones who write that the “treatment” for a diagnosis of infertility is IVF.
I don’t entirely blame doctors for doing this. They are just doing what they’ve been taught to do. It’s a common story: put the teen on birth control for acne, mood swings, or any number of issues, and tell her that it will even out her hormones because that’s what the studies say. In fact, 33 percent of teen girls on the pill state they are on it for non-contraceptive reasons.
What no one is telling these girls, however, is that when symptoms like pelvic pain, excessive bleeding, and hormonal imbalance are happening chronically, taking hormonal birth control isn’t actually stopping a disease from growing. In fact, contraceptives have actually been associated with a worsening of conditions and a delay in diagnosis and treatment for myriad reproductive dysfunctions.
Throughout my entire experience in the standard medical system, not a single doctor told me that debilitating pain or the serious pits of depression I would fall into could actually be a reflection of something deeper going on. No one told me that by masking pain with NSAIDS instead of investigating it, I could be putting my future fertility at risk.
The Turning Point
I started college at Notre Dame in a not-so-ideal state. I had already been through years of doctor’s visits by the time I found myself at the university health center, once again being offered a prescription for hormonal birth control to “alleviate my symptoms.” After years of never knowing why I always felt out of control, loathed my body, and felt little desire for anything resembling a romantic relationship, my freshman year was marked by disordered eating and constant questioning of why I was even trying.
Symptoms like these aren’t uncommon among teens. With record depression levels and 45 to 95 percent of young women reporting painful periods, it’s quite a common phenomenon. But that doesn’t make it normal. Pain and cramping with menstruation usually signify an underlying inflammatory or structural disease, often indicating conditions like endometriosis, adenomyosis, or hormonal dysregulation rooted in pelvic inflammation—all of which can affect fertility and cause other health issues that affect quality of life.
My friends and I weren’t much different from the other millions of women experiencing pain with their cycles. If you searched “cramps” in my text messages, you would find hundreds of complaints, canceled plans, and offers to deliver Midol. None of us really knew that what we’d been describing and commiserating over could mean something was seriously wrong.
This changed for me when the pro-life group at Notre Dame hosted a NaPro FertilityCare practitioner to teach a fertility awareness-based (FABM) cycle charting class for students. Her presentation explained how each of the dips and rises in women’s hormones every month follows a very specific pattern to support ovulation and overall systemic balance. When the pattern is off, the woman’s physiological stability will be, too. She showed us how irregular dips in hormone function could cause irregularities in our cycles and warned that they could be signs of underlying dysfunction. I was floored—no one had ever explained any of this to me before.
The concept of using a woman’s cycle as a map of her overall health isn’t some niche new “MAHA” initiative—in fact, the American College of Obstetricians and Gynecologists (ACOG) calls the menstrual cycle the “fifth vital sign” of a woman’s overall health, along with blood pressure, body temperature, heart rate, and respiratory rate.
Even so, the majority of women are never taught how to chart or what a normal cycle looks like. Washington, DC has the only school district in the country that implements menstrual health education standards in public school curricula, and this wasn’t until 2022. Imagine the changes that would be made for earlier diagnosis, fewer risky sexual behaviors, and overall health if women were taught FABMs at a young age and had the data to bring to their doctors when something looked awry. This type of body literacy education could revolutionize women’s health.
The NaPro practitioner left us with a call to action, one that haunts me to this day. It was the push I needed—and often still need—to put my health first and pay attention to my body instead of powering through. She told us, “If you can’t do it for you, do it for your future daughter”—so she knows what’s normal; so she doesn’t have to suffer in silence.
So I did.
My Case
After spending my senior year attending a Cycle Mindfulness Club and learning about restorative reproductive medicine (RRM), the field treating the root causes of reproductive dysfunction, I knew I needed to look outside the normal system of medicine if I wanted to ensure I would actually be treated. I needed someone who was committed to finding answers rather than suppressing symptoms, even if that meant stepping outside the insurance system built to reward quick fixes. And, since so few doctors are trained in true RRM care, they often have very long waiting lists for patient care. I finally found help from Dr. Marguerite Duane, a family physician and the co-founder and executive director of the leading community of RRM healthcare professionals, FACTS about Fertility.
In one appointment, Dr. Duane had me scheduled for a three-day, cycle-synced hormone panel, put me on an elimination diet for endo inflammation, tracked daily reports of my cycle and symptom charts, and prescribed hormone-supporting supplements like myo-inositol and selenium. She scoured my charts for signs that things might be getting better, but after several months of blood panels and many other tests with symptoms that weren’t improving, Dr. Duane then referred me to the RESTORE Center for Endometriosis, led by laparoscopic excision specialist Dr. Patrick Yeung.
Dr. Yeung’s practice focuses solely on optimal excision of all endo lesions, guided by his own research that ablation and limited excision surgeries don’t actually cure the disease and aren’t the gold standard of patient care. Dr. Yeung’s study of 620 patients (2012–2019) demonstrated a 2.5 percent repeat surgery rate, far below the 40–60 percent recurrence rate after ablation surgeries.
I first met with Dr. Yeung in March 2025. I knew I was taking a big risk. I would be paying thousands out of pocket, flying across the country, and letting a stranger cut me open, all for a disease I only suspected I had. But I was tired of being brushed off by doctors, and I knew I at least had to try. What I didn’t understand until then was why a surgeon like Dr. Yeung had to operate out of network to do the work he did. Why couldn’t I just have surgery in DC?
This is because the current billing system for endo care pays for volume, not precision. Every medical service is reduced to a Current Procedural Terminology (CPT) code alongside a flat Relative Value Unit (RVU) reimbursement rate for the physician. These are created at the federal level by a small subset of doctors who estimate the time, expense, and risk level for each procedure or treatment. For endo, however, the CPT codes and medical standards alongside them have yet to be updated to recognize the work that NaPro surgeons and excision specialists are doing to fully treat endo.
If Dr. Yeung operated his practice in-network, he’d be reimbursed for the bare minimum procedure, even if he spent twelve hours cleaning out and reconstructing a woman’s pelvis. Hospitals lose money on that, and in turn, they pressure surgeons to move faster and offer less comprehensive care; more surgeries, rather than fewer, more thorough ones, are favored. Those who try to fight for the ability to do longer surgeries within the system often face pushback and repercussions.
Recognizing the system’s shortcomings, and taking a leap of faith, I flew to St. Louis and prepared for the surgery. When I woke up, my mom told me Dr. Yeung found endo everywhere. There was so much endo growing in my pelvis that it was starting to make my left ovary stick to the sidewall of my bowel. He took everything out, spending hours meticulously inspecting and cutting out every lesion, both on and beneath the surface, separating my scar tissue and placing adhesion barriers in between my organs so they didn’t stick together while they healed.
He told me if my endo had been left to progress, it would have completely distorted my entire reproductive anatomy—my fallopian tubes, ovaries, and uterus—and even could have caused an obstruction in my bowel. Dr. Yeung said that I probably preserved my future fertility.
I felt so much relief—finally, I had confirmation that I wasn’t crazy—but also so much anger. It had taken me a decade to get to this point, and I still had so much recovery to go.
The Standard of Care for Endometriosis
Most women with endo get nothing like the care I received. In a normal scenario, if a woman came to her doctor with chronic pelvic pain, heavy bleeding, hormonal imbalance, etc., she would never be evaluated for the cause of these symptoms. The sole care model would be palliative, simply alleviating her pain without inquiry into the cause.
In fact, under ACOG’s practice guidelines for OB-GYNs on the management of endo, the treatment model is to begin with “empiric hormonal suppression” (a combination of oral contraceptives, progestins, and GnRH agonists) and see if it manages her pain. If she experiences even just partial relief, they recommend keeping her on these drugs for years, enduring the side effects while allowing the disease to progress.
If a woman on this regimen decided she wanted to conceive, they would have her stop the hormonal therapy, and her symptoms would return with full force. Rather than recommending any sort of diagnostic intervention or identification of the level of disease she might have, ACOG actually instructs OB-GYNs not to order laparoscopic exams. A woman would probably then be diagnosed with unexplained infertility and either undergo ablation—the burning of surface endo lesions rather than excising the disease completely like Dr. Yeung was able to do for me—or referral to an ART (artificial reproductive technologies) clinic. If she didn’t want to conceive, the standard procedure would be a hysterectomy.
In any other field of medicine, if the standard was pain management and symptom suppression rather than diagnosis and treatment, patients would be up in arms. But most women don’t even know there’s another option.
The reason for this gap in care is related to the way insurance networks code for endometriosis. Physicians like Dr. Duane and Dr. Yeung, who spend the time doing the months of preoperative and follow-up care, are almost always out of network. This isn’t because these doctors are looking for ways to make more money. In fact, they are usually taking a pay cut by operating out of network. Rather, it’s because the insurance system, built on the Centers for Medicaid and Medicare (CMS) coding systems, is built for quick, procedural care rather than the multi-hour, precision surgeries and long-term follow-up that chronic conditions like endo require.
Currently, there is also only one code for an endometriosis surgery reimbursement, regardless of whether the surgery lasted two hours or fourteen, and regardless of whether the doctor is a specially trained excision surgeon or a regular OB-GYN. Current billing codes—the CPT and ICD-10 codes every physician has to use—also don’t have categories for the months of diagnostic work invested in a patient with endo, including hormone panels, cycle charting courses, and evaluating symptomology.
Because of this, the few excision surgeons in the U.S. who do offer surgeries like mine have to be out of network if they are ever going to make enough to reimburse themselves for the work that they do on patients. As a result, women like me, who do find doctors who are willing to do the surgeries we need to cure our disease, have to pay thousands of dollars out of pocket, all because the value of restorative, root-cause care is overridden by medical associations that want to keep women in a system that will cover painkillers and birth control, but not healing.
The consequences of this outdated (and ideologically motivated) system ripple beyond just the economics. Because insurance doesn’t recognize or compensate the RRM doctors treating the root causes of infertility, women are then funneled toward the high-profit fertility industry. The system literally pays doctors more to mask women’s symptoms, circumvent their fertility, and create embryos in a lab rather than to restore their health and preserve their natural fertility.
It’s Not Just About (In)fertility
The treatment I received was gold standard and with the doctors at the very forefront of national conversations on treating infertility. But I did it all as an unmarried twenty-two-year-old, and that means I’ll never have the story of my “miracle baby” after years of infertility and finally finding treatment.
We shouldn’t merely celebrate the women with years of infertility under their belts who finally found someone to solve it, and now have babies in their arms. The goal was never just the opportunity to have the baby—it was about living a healthy life, free of pain and despair, before and after having children.
I’m incredibly grateful that I’m finally healing—but what about the other women?—The girls in middle and high school who are suffering through their classes; the women in college wondering why their bodies are turning on them; the women pushing off their pain and symptoms to deal with when they’re ready to have kids? There aren’t enough doctors trained to help them, and most insurance networks won’t accept this kind of care as medically necessary. We have to care about the women suffering now, not wait until they’ve made it through years of suffering and their infertility forces the issue.
The (Possible) Future of Reproductive Health
It doesn’t have to be this way. Vast movement is happening in the RRM world, and patients are finally seeing that restoring natural fertility is possible. But it’s going to take a lot of change.
It starts with body literacy education, teaching young women that their cycles are not a curse to be suppressed, but a vital sign of health to be understood. It means demanding that ASRM and ACOG rewrite their standards of care, moving away from the failed model of suppression and IVF dependence toward one that restores function and dignity. It means reforming insurance codes so women can access real treatment instead of being denied coverage for excision or restorative care. It means funding serious research on endometriosis, PCOS, and other reproductive diseases that have been dismissed for decades—instead of pushing more money into the IVF industry.
Medical schools must teach FABMs and RRM as part of standard training. Women must have true informed consent before being prescribed hormonal birth control that will alter their biology. We must shift the focus from infertility alone to the broader impact of reproductive health issues that affect a woman over the course of her lifetime, and invest in opportunities to improve her health and fertility before she struggles to get pregnant.
This isn’t just about better healthcare—it’s about proclaiming the truth that women’s bodies are good and worthy of care that honors their design. Our future daughters deserve a system that heals them instead of hiding their pain—a world where hope, not suppression, defines women’s health.