When I was fifteen, I began having stabbing pains in my lower abdomen — sometimes on my right side, sometimes on my left, and sometimes right in the middle. They were so intense that I would break into a cold sweat. If I were walking, I would double over like I was punched in the gut. My mom, who had her appendix removed as a young girl, had me perform all the old wives’ “tricks” to test for appendicitis: Hop on one leg, draw my knees in, and, eventually, wait it out. As time passed, the urgency of the pain would decrease, but it would always return.
We went to my pediatrician. While I REALLY want to qualify or excuse this next part, that would be setting a poor example for the lackluster healthcare too many women have received. In short, endometriosis was never brought up (nor were ovarian cysts, which I suspect were occurring and would be a lifelong issue). Speaking to my mom, not to me, the doctor said, “It’s not her appendix. It’s probably just cramps. She may just have a really low pain tolerance.”
This doctor would also misdiagnose my eating disorder, anxiety, ADHD, and depression as attention-seeking behaviors. I was also diagnosed with irritable bowel syndrome…I guess.
While the pain continued for me, sometimes getting so bad I couldn’t go to school, work, or function beyond being in a hot bathtub or underneath a heated blanket, endometriosis can be silent, which we will address later.
I was officially diagnosed with endometriosis eight years later, at age 23, when I went to the hospital with two ovarian cysts causing me such pain I was on the verge of fainting. My mom drove me to the emergency room because I was greying out at my job. The care team found that one cyst was torquing (twisting) and cutting off blood flow to my right ovary, and I was rushed into emergency surgery. I almost lost the ovary. The doctor discovered endometriosis during that surgery: “Like buckshot scattered all over.” For those who don’t know what buckshot is, it’s like little black dots, and they were all over my reproductive organs: Ovaries, fallopian tubes, and uterus. That doctor recommended I go on oral birth control, which I did, and I didn’t think anything of it for the next six or so years when I started trying to get pregnant.
So, what is endometriosis exactly?
According to EndoWhat?, Endometriosis is tissue similar, but not identical, to the lining of the uterus that is found elsewhere in the body. This tissue creates lesions that may cause pain, inflammation, and organ dysfunction and may lead to infertility. Endometriosis is most often found in the pelvis but has also been found in the bladder, bowels, diaphragm, lungs, and kidneys.
Endometriosis is typically diagnosed through laparoscopic surgery, where a doctor examines the pelvic organs and takes a biopsy of the suspected endometrial tissue. However, a newer, less-invasive option called the ReceptivaDx test is offering renewed hope to women with previously “unexplained” infertility hoping to get pregnant.
What causes endometriosis?
The exact cause of endometriosis is currently unknown. One possibility being considered is retrograde menstruation — a theory suggesting that during menstruation, some of the menstrual blood, which contains endometrial cells, flows backward through the fallopian tubes and into the pelvic cavity. These cells then implant and grow in the pelvic region, leading to endometriosis. Other potential causes include surgical scar implantation from procedures such as a cesarean section, immune system dysfunction, or genetic factors.
Hormones, particularly estrogen, also play a significant role in the development and growth of endometriosis. Estrogen promotes the growth of endometrial tissue, and in individuals with endometriosis, the misplaced endometrial cells respond to hormonal fluctuations in a similar way as those in the uterus. This can lead to inflammation, pain, and the formation of adhesions or scar tissue.
What does endometriosis feel like?
Endometriosis affects roughly 190 million reproductive-age women and girls worldwide, and an estimated two to ten percent of American women between the ages of 25 and 40.
Endometriosis can be symptomatic, with symptoms, or asymptomatic, without symptoms (or silent). If you have silent endometriosis, you may not discover it until you have abdominal surgery (like I did), have difficulty getting pregnant, or have other symptoms not commonly related to endometriosis.
That’s right — endometriosis may not feel like anything at all. Endometriosis symptoms are variable and broad, meaning that healthcare providers may not quickly diagnose it.
Common symptoms of endometriosis
Symptomatic endometriosis can cause severe pelvic pain, excessive pain, and heavy bleeding during or between menstruation, pain during sex, and/or when using the bathroom.
Other common symptoms may include bloating or nausea, fatigue, depression or anxiety, and trouble getting pregnant, which can come in the form of unexplained infertility or recurrent pregnancy loss.
Silent endometriosis
It’s estimated that between 20 and 50% of women of reproductive age with endometriosis have silent, or asymptomatic, endometriosis. Not only that, women with endometriosis (symptomatic or not) are 5 times less likely to get pregnant than women without endometriosis, likely due to inflammation of the uterine lining.
The good news is: that BCL6, a marker that identifies uterine lining inflammation, can help detect silent endometriosis. BCL6 is found in over 50% of women with unexplained infertility or recurrent miscarriages and around 65% with two or more IVF failures. BCL6 can even identify other leading causes of unexplained infertility in a single sample, including progesterone resistance and endometritis.
If you test positive for BCL6 via the ReceptivaDx test, the current published data recommends two equally effective treatment options: Hormone therapy or laparoscopic surgery to remove endometriosis. Alternatively, if you test negative, you gain reassurance that it’s not inflammation caused by endometriosis.
Knowledge is advocacy
Even if you’re experiencing symptoms of endometriosis, without the ReceptivaDx test, the only other way to discover it is through exploratory laparoscopic surgery. I’ve done this twice — and while it’s as “minimally invasive” as someone going into your body and poking around can be, it’s still surgery. My first recovery, in 2010, was a few weeks. I was in much more pain than my second time in 2023 when my recovery was about a week. But, perhaps if I had access to the tools available now, like ReceptivaDx, I would not have endured the years of infertility and pain that I did. Published studies show that women testing positive for BCL6 and left untreated have just an 11% chance of a successful live birth using IVF. But once treated, the probability goes up to over 60%. If negative, the probability is also above 60%. I like those odds.
Kristin Diversi is a writer and versatile creative. She is passionate about reproductive health and justice and lives in Longmont, Colorado, with her husband and their son.