The first time I heard the word endometriosis, it didn’t really register. After years of seeing countless OBGYNs, I had grown accustomed to the routine of the doctor listening to 60 seconds of me trying to explain my symptoms, pick a diagnosis from their random wheel of explanations, and assure me that everything I was experiencing was “normal.” For many who may not know, endometriosis is a chronic illness in which the tissue similar to the endometrial lining of the uterus grows outside the uterus, which takes an average of 10 years to be diagnosed. There is no cure.
It all started in 2005 when I was in 8th grade. At 13 years old, my first menstrual cycle didn’t look so much like a rite of passage as it did a murder scene. I was woefully unprepared for this experience and had an accident. The pain was so bad I could hardly think. A parade of well meaning but misguided doctors followed. My teachers, family members, and peers all assured me that a little pain was expected with that time of the month, but I knew this wasn’t normal.
Fast forward to 2015, nothing had gotten better… only worse. I was no longer feeling like garbage only while on my period, but 24/7/365. At this point, I was not clinically diagnosed with any disease that correlated to these symptoms, completely naive as to what was happening in my body. My entire pelvic region perpetually felt like a thousand knives were stabbing me, I could not have a bowel movement without my blood pressure dropping to the verge of fainting (needing someone always to stand outside the door), I couldn’t eat without my stomach bloating to look and feel 6 months pregnant, and my heating pad was plugged into the wall day and night.
While the physical aspect was brutal, the emotional distress I experienced was just as bad, if not worse. I was accused of having an eating disorder by many (including several doctors), I lost many friends due to my inability to keep up, I had to quit my big financial job in NYC partially due to lack of understanding, and felt completely isolated from the world and myself. I wore an imaginary mask of makeup and fake smiles to get through the day, and was forced to forge my own path in the professional world so I could work from home (or anywhere except an average 9-5 cubicle job) and be my own boss.
At this point, I had seen 6 OBGYNs, 2 Gastroenterologists, 1 Physical Therapist, 2 Neurologists, and 2 Endocrinologists over a span of 10 years. NOT ONE of those specialists mentioned the word endometriosis to me, nor would they give me any pain medications because I was ‘“too young to have any real issues,” “exaggerating my pain levels,” and/or my personal favorite: “probably making it up.”
Throughout the years, I tried many different pain management avenues to take the edge off. I tried the birth control pill (YUCK) for 5 months because I was told it would help, only to find that it would make me worse and cause me to be hospitalized. When that didn’t work, I tried smoking (briefly), and when that didn’t work, I drank tequila, and when that didn’t work, I tried going vegan, vegetarian, lacto ovo, pescetarian, all of the above…
It was April of 2015 when I had ruptured the most painful endometrioma ovarian cyst I had ever experienced. It was a normal morning until I felt a sudden, excruciating sharp pain on my left side. Minutes later, my mom found me gray and motionless on the bathroom floor and my breathing was faint. I woke up in the ambulance on the way to the hospital, cruciform on a stretcher, terrified, yet comforted that I was being cared for.
It was at that moment, I decided I was not messing around anymore. It didn’t matter to me how many ‘specialists’ I had to see to get even the slightest answer as to what was going on. My symptoms were worsening rapidly after the hospital episode, and it did not matter what I had to do to get better, because I was going to do it. I had officially shifted my mindset.
It was shortly after the hospital episode when I heard the word ‘endometriosis’ for the first time. I was 23, in the chair with the 7th OBGYN, who happened to be a fertility doctor (endometriosis is a top cause of infertility among women). The doctor was more thorough than any other doctor I had seen, and genuinely cared about what I was going through.
“Based on your symptoms and medical history, I think you may have endometriosis,” she said.
In my head I am thinking, ‘WHAT is endometriosis?!”
“Endometriosis is when the tissue similar to the endometrial lining of the inside of the uterus grows on the outside of the uterus,” she continued as she pulled out a booklet, showing me pictures of the disease in a real pelvic cavity.
I’m speechless, and before I could open my mouth to ask what the best course of treatment was, she said:
“The only way to clinically diagnose and treat endometriosis is through surgery, but there is no official cure to the disease.”
There it was… I felt in my gut that this was what I had. For too many years, my uterus essentially owned me. For too many years, I went through boxes of super plus tampons per period, put my husband and parents through hell, sat on one butt cheek just to sit comfortably, tried every “anti-inflammatory diet” under the sun, left the heating pad on until I burnt myself, felt terribly 24/7, and pretended to be okay.
For too many years, I went through boxes of super plus tampons per period, put my husband and parents through hell, sat on one butt cheek just to sit comfortably, tried every “anti-inflammatory diet” under the sun, left the heating pad on until I burnt myself, felt terribly 24/7, and pretended to be okay.
Two months after this episode, I opted for excision laparoscopic surgery. To everyone’s surprise, the surgeon found late stage endometriosis. Hundreds of lesions encompassed my pelvic region. The disease was found and removed from my uterus, fallopian tubes, ovaries, rectum, colon, appendix, pelvic wall, bladder, and going for my liver. My appendix was also removed along with multiple endometrial polyps and fibroids.
When I woke up in the operating room after surgery, I was overwhelmed with peace to find that I was clinically diagnosed with endometriosis. In the words of my surgeon, “It was aggressive and it was everywhere, but we got all of it.”
While I was thrilled to finally have answers, I was crestfallen to hear that 62% of those with endometriosis have further surgery, with a median time of less than 2 years to the second surgical procedure. Furthermore, 1 in 5 opt for hysterectomies when that is not the most effective course of treatment for endometriosis: excision surgery is. This is only a matter of education.
I am now almost 8 years post-op from my first and only excision surgery. My pain was under control for over 7 of those years. The journey continues as I now have an endometrioma cyst again on my left ovary that needs to be removed, along with another fibroid, both likely culprits of a season of infertility. In June of 2022, I made an extreme lifestyle change towards ancestral living, which helped drastically improve my symptoms. While I live mainly with very little pain due to these changes, I still absolutely suffer from the effects of this chronic illness.
This disease has caused me so much physical and emotional pain over the years. It has also brought me great joy. I have met some of my nearest and dearest friends through the endometriosis community. This community has such incredibly strong women and advocates who are fighting for change.
There are millions of women without answers who suffer the way I did during and prior to 2015. My endometriosis journey is similar to what millions of both diagnosed and undiagnosed women are going through right now on a global scale. 1 in 10 women have endometriosis. If you know 10 women, you know endometriosis.
Extraordinary personal journey. A real brutally honest account shedding light on the hidden suffering of so many. Well done!
My daughter is “1 in 10”