Endometriosis is a reproductive health disorder affecting approximately 1 in 10 women, and I am 1 in 10.
With endometriosis, the lining similar to that of the uterus (the endometrium) that’s normally shed during menstruation spreads to other organs. Some of the most common places for this tissue to spread to are the abdominal wall, ovaries, Fallopian tubes, bowels, and bladder. There is no cure for endometriosis. Even with a hysterectomy, endometrial cells can still be in the abdomen.
For me, the pain started with my very first period. I was violently ill, almost like I had a stomach bug; the only difference was that I had painful cramps that I had never experienced before. I spent the next few months thinking that I kept getting a stomach bug every time I got my period. Nearly every period left me on the couch or doubled-over in the bathroom. Often the pain was so bad that I’d black out. If you ask my family, they’ll remember many nights where I yelled out for water and pain medication from the bathroom in the hope that I could stop myself from passing out or throwing up. It took a few years before I told anyone I was menstruating because talking about menstruation felt stigmatized. Because I didn’t talk about it, it took time to realize that these symptoms weren’t normal. I was trained to think that period pain is normal, but it’s not. My mom also has endometriosis, so when I finally opened up about my periods, she recognized it in me right away. I started tracking my cycles to try to better control my pain and to schedule my life around my period and ovulation. Whenever I was due for my period or ovulation, I’d take Advil every few hours to try to prevent myself from passing out.
By my senior year of high school, I was forced to leave early pretty frequently and all too often. I finally met with a gynecologist, who more or less brushed me off and explained that my symptoms were normal. Spoiler alert: they weren’t. And just a fun fact, if your mother or maternal grandmother had endometriosis, there’s a high chance you’ll inherit it. Anyway, the doctor said I could try birth control if I wanted to, so I did. Hormonal therapy is the only way to slow the spread of endometriosis. Unfortunately, when I was brushed off, no one ever noticed that the pill was virtually useless due to the counter effects of other medications I was taking.
I made it to my freshman year of college, but within a month of being on campus, I wound up in the ER for the first time because of the pain. They did a CT scan and they told me I didn’t have endometriosis. I felt completely brushed off. Endometriosis can’t be seen on any sort of imaging unless the lesions are large. Despite knowing this, I shut down and just dealt with the pain.
Junior year of college, the pain was getting worse. I was developing nerve pain in my legs each time I ovulated or menstruated. I found a new gyno who was in the same practice that diagnosed my mom. Initially, I finally found someone who believed me. For a while, we weren’t sure if I had a lot of ovarian cysts or if the pain was from endometriosis. There were months where I’d get weekly ultrasounds to rule out large/ruptured cysts or ovarian torsion. Eventually, she started me on the Depo shot to help with the cysts. This hormone treatment is also stronger than the pill, and couldn’t be inactivated by the other medications I was taking. The Depo shot helped, up to a point. Still, it wasn’t without a price. Everyone’s reaction to hormonal treatments are different. For me, the Depo shot led to a major weight gain, worsening depression, acne, and osteoporosis at the ripe age of 22.
Senior year, I had the on-campus medics called to the bathroom after I was starting to faint in the stall. After that embarrassing episode, combined with a year of constant office visits, I agreed to an exploratory laparoscopy to get diagnosed with endometriosis and remove any extra tissue found. In this procedure, the doctor sticks a camera in the abdomen (usually through an incision in the belly button) and then inflates the abdomen with gas to get a better visualization of the internal organs. This is the only way to conclusively diagnose a woman with endometriosis.
Unfortunately for me, there were supposedly no signs of endometriosis. I was beside myself. I had hit so many roadblocks. And even though I had never been diagnosed, I believed I had endometriosis for the majority of those 11 years because I had textbook symptoms and a family history. Considering this gynecologist had decades of experience, I trusted in what she saw (or didn’t see). She referred me to a GI specialist to figure out what was causing my pain. Just a few months after my surgery, I had an endoscopy and colonoscopy. Again, nothing that could explain my symptoms was found. The only abnormality was stomach ulcers from all of the Advil I was taking for pain.
As became the pattern, I shut down and distanced myself from the medical world as long as I could. About a year and a half later, the symptoms were getting bad again. I was starting to have bladder involvement. I also experienced an increase in blacking out and nerve pain. Working as a nurse, it sucked being on my feet during episodes that would normally leave me in the fetal position with a heating pad. There were also many shifts I remember either pulling over on my way to work so I didn’t pass out while driving and/or having to run to the bathroom to black out.
I finally caved and started the search for a new gynecologist. This time, I finally got lucky. I found a provider who believed every part of my story. During my first visit, she discovered I had a retrograde uterus: just another hallmark precursor to endometriosis. She told me that endometriosis can be microscopic, and therefore not always visualized in surgery. It’s not standard practice to blindly biopsy where endometriosis might be, which is probably why I couldn’t be diagnosed. My APRN referred me to a surgeon who specializes in endometriosis. He took me in for surgery at the beginning of 2020, and gave me the validation I was looking for. He confirmed what I thought I knew for 11 years: endometriosis. Not only was the endometriosis confirmed macroscopically, but also microscopical from the tissues biopsied. In the most validating moment of that office visit, he told me that he didn’t understand how it was missed for so long between my symptoms and the obvious “sandpaper” pattern on my abdominal wall. While he was inside my abdomen, he removed as much tissue as he could to better control my pain. Unfortunately, in this visit I was told that there's a high suspicion I have adenomyosis as well. Adenomyosis is growth of uterine tissue in the muscles of the uterus. Although adenomyosis is a lesser known condition and poorly understood, obstetricians and gynecologists are noticing that these two conditions are usually present together. The only treatment for adenomyosis is a total hysterectomy.
Shortly thereafter, I started a new hormone therapy with fewer side effects and better results. The pain is almost nonexistent compared to the pain I had experienced prior to surgery. I stuck with this practice, and am forever grateful to them. I know there’s a very real possibility that I’ll need another surgery if the pain gets too bad or if I want to have children, but for now I am happy with how things are.
As frustrating as this journey has been, I’m actually one of the lucky ones. Most women don’t find out they have endometriosis until they try to start a family and struggle to get pregnant. Since finishing my political science degree, it’s been a goal of mine to help women like myself. It shouldn’t take more than a decade to get a diagnosis given the advancements in health care. Recently, I was fortunate enough to find Representative Jillian Gilchrest in my home state of Connecticut. She has started an endometriosis working group, and we’re hoping to propose women’s health care reforms by the start of our next legislative session. The goal is to educate women and health care providers to diagnose this disease early.
Amber is currently a registered nurse living in Connecticut. In December of 2020 she finished a second degree in political science with hopes of reforming stigmatized areas of health care, like women's health. She's currently working with state representatives in Connecticut to pass legislation regarding endometriosis education. In her free time, Amber enjoys kickboxing, hiking, photography, and a good rom com.
Amber's endometriosis symptoms started at age 13, and she was finally diagnosed at age 24. Amber credits her mom to her diagnosis. Despite technological advances since her mom's diagnosis, she believes it would have taken at least another decade to be diagnosed. She hopes that sharing her story will help women recognize signs of the disease and decrease stigma around reproductive health.
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*Patient stories submitted to EndoFound.org are the views of the patient and not necessarily those of the foundation. All testimonials are from real patients, and may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.