Endometriosis… That Word

That word. Endometriosis. The soft glow of my phone shone on my face in the middle of the night. I was having another night of pain-induced insomnia. A stabbing pain in my left pelvic side, that wouldn’t let me sleep. I had already taken eight ibuprofen pills that day, and the horrific acid reflux that was currently burning my throat was warning me that I shouldn’t have another. I focused back on the screen: endometriosis. I read the word again, and the definition. As I looked through the list of symptoms, I thought to myself, “Why am I looking for more answers?” I already had two gynecologists tell me the pain was normal, the excessive bleeding was normal, and the fainting was normal. The first gynecologist in fact, shamed me for having sex, prescribed birth control, because she said I was hell bent on ruining my life. She didn’t even address the pain.

I took “the word” to a third gynecologist. “Endometriosis,” she repeated back to me. “You really shouldn't google symptoms, you get all kinds of things that don’t make sense,” she said. “Besides, you are too young to have endometriosis, and your pain is normal.” I left dejected. Another month passed, and I fainted again, on my way home from a trip to the mall with my sister.

I saw a fourth gynecologist. I said “the word” to her. “This isn’t gynecological,” she said. “This is gastroenterological,” she said. I went back to my primary care doctor and explained all my symptoms again. He pushed me to see one more gynecologist.

I waited months. I was beginning to believe I was just weak. If four doctors were telling me the pain was normal, then it had to be. I had a few more ER visits, where I was given morphine and loaded up with opioids. I never took them, mostly because they didn’t help the pain and I was afraid of dependency. As the oldest first-generation American in my family, I couldn’t make any mistakes. I had no safety net and the pressure was on me to change the trajectory of the family. How could I complain about pain, when my parents had jobs where they sacrificed their bodies non-stop for me? My mother worked a physical job, taking care of adults with intellectual disabilities, as a single mother. She would work 70 hours a week sometimes, and I never heard her complain about pain or feeling tired. My only job was to go to school, get good grades, and behave. How could my pain matter when I had it so easy, or so I thought?

I finally decided to see a fifth gynecologist after a particularly debilitating episode. Focusing in undergrad became impossible, and between my two jobs, I was sleeping any moment I was at rest. This new doctor was kind and listened. Like the other visits, the routine gynecological exam was excruciatingly painful. I would often cramp and bleed after a routine check-up. When we went back to the gynecologist's office, he looked at me and said, “I believe you have endometriosis, I am so sorry, this is an awful disease. I can only know for sure if we do laparoscopic exploratory surgery and biopsy the tissue. It is painful, there is no cure, and the only way to treat it is with a hysterectomy. You may likely never have children, but you should try now, and I’ll perform a hysterectomy after.”

It felt like my soul had floated away from my body and was looking at me. Hysterectomy? What was that? No children? Surgery? Once his words had settled in, I cried. From relief and from what felt like a hundred decisions I had to make. Being validated by him, after being told my so many medical professionals that I was fine, was emotionally overwhelming.

“Ok,” I said. “Let’s do it, the surgery.”

I was 21-years-old. I had a diagnosis. The pathology report came back with “that word.” Endometriosis

My gynecologist performed an ablation, a procedure that burns tissue, on the endometriosis lesions he saw. Essentially he burned the top off the endometriosis lesions. I didn’t know then that this wasn’t the appropriate treatment. After the surgery, the aftercare was that I return to normal life two weeks after; that I was to let him know when I was trying to have kids because it would be difficult.

I didn’t finish college that semester. I failed all my classes. I had to quit my job, because I couldn’t lift anything too heavy.

It would be the beginning of things my body tried to warn me about for the next 11 years.

At 24, I’d be diagnosed with hypothyroidism which my primary care doctor assured me he could manage.

Every time I exercised, I’d be in excruciating pain after. Five years after my diagnosis, I was in pelvic pain all the time. I had strange pains up and down my legs. I began to gain some weight, because every year, my mobility decreased. “Lose weight,” my doctors would tell me, despite my excellent bloodwork and my constant overexercising.

At 27, however, my blood work suddenly changed. My liver was at danger levels of an alcoholic. I barely drank. A biopsy showed I had NonAlcoholic Fatty Liver disease. I told my same primary care doctor about my pain and my endometriosis. “It has nothing to with it,” is what I was told. No other tests were run on me.

“Lose weight,” they said. I overexercised and did every diet you could think of. My pelvic pain worsened. I’d have a few more ER visits. But this was my life. Twelve ibuprofen pills a day during my period week and four to six ibuprofen pills every day after and before.

By 29, my mobility was at an alltime low. I had never given up hope that there had to be an alternative treatment for endometriosis. I was vegetarian, vegan, pescatarian; I ran, I rowed, I did Zumba, and I even I tried lifting weights. None of this would last long, because the pain was always there. Pulsing. It felt like someone was cutting my insides with razor blades and rubbing lime and salt in the wounds.

I stopped wearing my favorite colorful clothes, and I stopped wearing heels because I’d be in excruciating pain after. I wore whatever was loose and comfortable. I walked tenderly, to avoid too much movement, otherwise each step sent a shockwave of pain up my spine. If you’re wondering how I kept a job and social life, I’m not quite sure either. Whenever I wasn’t with people, I was in a fetal position and sleeping. I was too embarrassed to tell anyone I was in pain, especially because I didn’t know why. People got the best version of me, and I always made sure never to let anyone see me suffer. My doctors, partners, and family attributed my lack of energy and pain to not being healthy enough. I believed them.

2019 was different. I found Nancy’s Nook, a Facebook group, all volunteerdriven by endometriosis patients and what I like to call the punk rockers of the medical community. I buried myself in the information. I learned that none of my gynecologists knew how to treat endometriosis because they were being guided by an outdated theory taught in medical school. The incorrect definition is still on the American College of Obstetricians and Gynecology Association’s (ACOG) website today. Dr. Sampon's theory of retrograde menstruation blames the inner lining of the uterus somehow escaping the uterus via retrograde menstruation as the cause. This was accepted as the theory at the time. However, newer, better research shows that retrograde menstruation occurs in 90% of people who menstruate –and yet endometriosis is only found in about 10%! Furthermore, upon studying the endometriosis lesions in the body, and even by Sampson’s research, endometriosis lesions are similar to the tissue in the lining of the uterus, but they aren’t the same tissue and have hundreds of differences! Endometriosis has been found in people assigned male at birth and even in fetuses. These new findings clearly show this isn’t a menstruation disease nor related to the uterus. It’s actually a systemic inflammatory disease that has been found on every organ in the body!

Why are doctors so grossly behind on treatment? Endometriosis expert Dr. Jeffrey Arrington explains, “Gynecologists are terribly “miseducated” about endometriosis treatment. This largely relies on the inadequate surgical education we receive. General gynecologists simply do not leave residency with the skill to identify and remove Endometriosis in all its presentations and locations. When met with disease that they can’t treat, they run to the only “treatment” they have been trained to provide, hysterectomy and castration. Most of them have not reviewed any literature or received any education in Endometriosis management since leaving residency. Their knowledge is old and based on studies that used incomplete surgery as the benchmark for comparison. Few general gynecologist “want” to treat patients with endo, yet they also do not want to “lose their patient.” Whether it is outdated education,

Fast Facts

1. Endometriosis is a full-body disease. Endometriosis lesions have been found in every single part of the body.

2. Endometriosis is not a menstruation disease, and it has been found in men, fetuses, people with hysterectomies, and postmenopausal persons.

3. Endometriosis has no cure. It requires a multi-modal treatment approach, with the golden standard of care being expert excision surgery.

4. Endometriosis cannot be treated by pregnancy or a hysterectomy.

5. There are currently no drugs that treat or “stop” endometriosis lesions from growing.

Actions To Take

Educate a provider! Endowhat provides free educational kits to school nurses around the country.

Endometriosis Awareness Month happens in March! Wear yellow to support your fellow endometriosis friends!

worry about losing patients, or pride, many gynecologists simply will not admit when endometriosis is beyond their capability of treating.”

In the summer of 2019, the pelvic pain became unbearable. My PCP recommended I see a gastroenterologist. I provided all types of samples and underwent a colonoscopy. Everything came back negative. No gastrointestinal issues.

One particular night, I experienced a very strange symptom. I went to see my gynecologist. He incorrectly diagnosed me with pelvic organ prolapse, a condition where an organ slips from its position and bulges in the vagina; I was told to do Kegels. I was in shock…again. I looked at the same gynecologist who diagnosed me, and said “the word.” “Is this related to my endometriosis?” I asked. “No. I don’t know how you have prolapse, I’ve never seen it in a patient that hasn't given birth. We’ll have to stitch up your uterus once you have a child.” The words just pounded in my head. How could I think about a child, when I was in so much pain?

I was relentless. I researched who could help me with prolapse. Pelvic floor therapy is what popped up. A profession I had never hear of. Pelvic floor therapists focus on the rehabilitation of the pelvic floor. Since I was convinced this was related to my endometriosis, I tried to see if I could find a pelvic floor therapist that understood it. I found one in Nancy’s Nook. Not only did she exclusively treat endometriosis patients, but she had endometriosis herself. She was a godsend, and still relentlessly doing her advocacy work with the Endometriosis Summit. She co-founded this annual event with Dr. Andrea Vidali, my surgeon, an endometriosis excision specialist.

The first visit changed my life forever. I didn’t have prolapse, what I had was a tense pelvic floor and pelvic floor dysfunction. Something the Kegels was making worse. What I called my “ovary” and “uterus pain” was actually nerve compression. Caused by possible hernias, created from years of tension in my pelvic floor. She explained to me what expert endometriosis excision was. An endometriosis expert is someone who spends all of their time performing endometriosis excision. In the words of Dr. Ken Sinervo from the Center for Endo Care, “very few can do both obstetrics and be an excision surgeon. I operate 4-5 days a week and could not deliver a baby if I tried – too busy.” It is far too complex of a disease to be treated by a regular OB/GYN.

I had my endometriosis excision surgery in December of 2019. Turns out my entire peritoneal sac and rectovaginal area were full of endometriosis lesions and fibrotic tissue. I had a small amount on my left ovary. I cried as my surgeon showed me my surgical photos. It was proof and evidence of my pain. That word had pictures. MY endometriosis When I woke up from surgery, the feeling of endometriosis pain, that razor blade wound, feeling was gone. I could almost feel like something was missing. The pain just wasn’t there.

After the surgery, the nerve pain persisted, and I couldn’t see a pelvic floor therapist because of the lockdown restrictions. I could barely walk five minutes without being in excruciating pain. It wasn’t endometriosis lesion pain but rather “endometriosis fallout” as described by Board-Certified Patient Advocate (BCPA) and Doula Alysia Dagrosa. The persistent “new” pain proved what we feared – I had hernias. I saw an occult hernia specialist who immediately saw three hernias on a CT scan that was reviewed and showed nothing of note by the techs that reviewed it. In November 2020, a month shy of my one-year anniversary of expert excision surgery, I had seven hernias repaired. The hernia pockets were full of fat tissue that had been pulled off my abdomen. Immediately upon waking from surgery, I had better use of my left leg. Within three months, I had a significant decrease in overall pain. Once I started working with a pelvic floor therapist, those fiveminute walks turned into 30-minute walks. Within a year, I would also be working with a personal trainer that specializes in pelvic floor dysfunction. I am powerlifting now. I’m crying as I type this, as it has felt like my body has betrayed me for so many years. It is so empowering to have back the strength that I had lost. To feel powerful and more in control. My bodily strength, I realize, is a marker of health in my family. I think about how I used to hide my pain as my parents must have. I don’t hide it anymore, but it does feel good to feel as strong as I thought they were as a young woman. The reason I share my story is so that no one else waits an average of seven to eleven years for a diagnosis, and can avoid being butchered by doctors who don’t know enough about the disease.

Nathali is a proud sister from the Gamma Pi Chapter at St. John’s University in Staten Island. She was born and bred in Brooklyn, N.Y., and resides there to this day. Theta Phi Alpha was so important to this first-generation American that is a part of the Central American diaspora. The Fraternity gave her the skills she still uses today to navigate her educational and professional life. She currently works in hedge fund compliance at Brevan Howard. She creates informational endometriosis content in English and Spanish on her Instagram page @endocipota, endo is short for endometriosis and cipota is a colloquial term for girl in El Salvador and Honduras, where her parents are from. When she isn’t volunteering for Theta Phi Alpha or advocating for endometriosis patients, she’s working on her journey to compete in her first powerlifting competition. Follow