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, maybe attempt to 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 not 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, but it was wreaking havoc on 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 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.
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 with a liver and histamine episode. When that didn’t work, I tried medical cannabis (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 in agony, 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 to TRULY be my own advocate.
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 female health specialist, Dr. Nolte, who happened to be a NaPro fertility MD at the Gianna Center NYC (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 was 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 was 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.”
I fainted (no lie). 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. All of this came to a head that I quite literally fainted in her office when she told 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.
CLICK HERE for the comprehensive list of endometriosis symptoms
Two months after this episode, I opted for excision laparoscopic surgery with Dr. Seckin, July 2015. To everyone’s not-so-surprise, he 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 via D&C.
When I woke up in the operating room after surgery, I was overwhelmed with peace to find that they removed the endometriosis. In the words of my surgeon, “It was aggressive and it was everywhere, but we got it.”
Recovery was tough for me, but it is the best decision I made – I got my life back after this surgery and went on to accomplish some pretty incredible things over the course of the following decade.
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 an effective course of treatment for endometriosis: excision surgery is. Hysterectomy only cures adenomyosis which is a different disease that women with endo can have. This is only a matter of education.
The Journey Continues: December 2025
As I update this piece in December of 2025, I am now 10.5 years post-op from my first endometriosis excision surgery. My pain was under control for over 7 of those years. The journey continued into summer 2022 when doctors found two endometrioma cysts (one the size of a lime, one the size of a grape) again on my left ovary, along with another fibroid, both likely culprits of a season of infertile cycles and significantly heavy bleeding.
In June of 2022, I made an extreme lifestyle change towards ancestral living (I wrote all about it here – I recommend you read), which helped drastically improve my symptoms. Miraculously, when I was preparing for surgery to have them removed, they found that both of the cysts had shrunk and my pain was drastically subsided… However, the heavy bleeding did not.
I did opt for a minor fibroid surgery via hysteroscopy in July 2023, which did absolutely nothing because the surgeon who I won’t name only shaved down the fibroid, but did not remove it in its entirety.
My journey continued in December 2025, when I opted to tackle my fibroid problem with my 2015 endometriosis hero, Dr Seckin again. Since it had been 10.5 years since my last surgery with him, and based on the tremendous relief and life changing effects I received from that procedure, he was the man for the job. Plus, I was due for an endometriosis ‘clean up’ surgery anyway given my history of redeveloping endometrioma cysts,
My bleeding over the course of the last few years was significant. While my pain was minimal due to my diet and lifestyle changes, the bleeding was so unbearable that I had to plan my entire life around it. I could barely leave the house for 2+ days on my period because I needed to go to the bathroom every 30 minutes. I had numerous accidents (both publicly and privately) and it became very frustrating for me as it was affecting my day-to-day life. I added so many black clothes to my closet, and I was wiped out by day 5. Thankfully, I did not experience anemia due to my diet and lifestyle + naturally having higher iron from genetics, but it could have been hazardous for someone who does not have adequate iron/ferritin levels.
Furthermore, the biggest of the fibroids was about the size of a 12 week fetus sitting as a boulder inside the uterine cavity, pulling on one of my ovaries and causing other issues such as infertility, hormonal swings, bloating and discomfort aside from the hemorrhaging.
Given that I didn’t complain about pain as much as I did about the heaviness of my menstrual cycle from these fibroids, we expected to find some endometriosis, but we were all shocked at the amount of endo found: 24 specimens taken. This time, it was heavily concentrated on the left side (likely from endometrioma leakage from previous cysts on my left ovary). Endometriosis was found on my bladder, ovaries, hypogastric plexus nerves, ureters (the tube that connects the kidneys to the bladder), peritoneum, rectum, and even on my diaphragm, just to name a few.
This time, recovery was tough for me the first night: I had a uterine balloon temponade, ovarian suspension on both ovaries, and a foley catheter and was on bedrest for 24 hours. By the next morning, once those 3 items were removed, my recovery accelerated quite fast. I was off narcotics in 2-3 days, and my body stabilized so quickly in terms of regaining bowel/urinary function, appetite, walking, and releasing the CO2 gas – I was blown away. I believe deeply that my diet and lifestyle changes certainly helped with this along with mental preparation since I had been through this before.
As I write this in December 2025, 12 days post op from my second endometriosis excision surgery in 10.5 years, I am still riding the post-op recovery wave of exhaustion, hormonal fluctuations and occasional need for Advil, but I am so hopeful. I am deeply excited to see how my life changes for the better and what I will be able to accomplish. I am full of gratitude for my skilled team, as well as all endometriosis excision specialists who dedicate their lives to us suffering with endometriosis.
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.
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FURTHER READING:
My Endometriosis Journey: https://megconnolly.com/2023/03/17/my-endometriosis-journey
Endometriosis Symptoms: https://megconnolly.com/2025/12/30/endometriosis-symptoms-common-signs-that-should-not-be-ignored/
Ablation vs Excision Endometriosis Surgery: https://megconnolly.com/2025/12/30/endometriosis-excision-surgery-vs-ablation-surgery-whats-the-difference/
What to Pack/How to Prep for Endometriosis Excision Surgery: https://megconnolly.com/2025/12/30/what-to-pack-for-endometriosis-surgery-hospital-recovery-essentials/
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Not medical advice
I attribute the success of my personal journey to prayer, my skilled medical team, and these lifestyle/dietary changes (certainly no medical claims as I know how this disease can affect people in many different ways).
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”