As I bent down to pick up my eight-month-old son from his crib, a pain in my lower back crippled me. I breathed deep trying to overcome the searing hot sensation throughout my right side as I lifted him. Soon the wave of agony passed. I hoped it was just some odd occurrence—after all, I was a first-time mom functioning on zero sleep, I probably pulled a muscle or pinched a nerve in my back. But as the weeks progressed so did the pain, and other symptoms started appearing, ones that are all too familiar to me.
I have endometriosis, a painful condition where tissue similar to the kind that lines the uterus is found outside the organ. An estimated 1 in 10 women of reproductive age in the U.S., or about 7 million people, have it. I had endometrial lesions on my uterus, ovaries, appendix, and bladder and underwent two excision surgeries, considered the gold standard, to remove the tissue at the root rather than simply burning it. In August 2018, I welcomed my son after going through three egg retrievals followed by in vitro fertilization (IVF) as endometriosis had diminished my egg reserve making it virtually impossible to conceive naturally.
A few weeks after I first felt the pain in my lower back, I was doubled over. My entire abdomen was bloated, and I had a low-grade fever with chills, so I went to the emergency room. After several tests, the doctors decided I needed a third excision surgery that night. When I woke up, one of the surgeons told me, "You're very fortunate to have your kidneys. If you waited another week, you would have gone into renal failure." She said my ureters, or the tubes that carry urine from the kidneys to the bladder, "were swollen like sausages" from endometriosis lesions.
Baffled, I asked her, "You could lose your kidneys from endometriosis?" She replied, "Yes, and the last thing you need is to have dialysis twice a week while you wait for a kidney donor." I never imagined endometriosis could be so aggressive, nor did I know it could have put my life on the line.
Endometriosis is commonly referred to as a “reproductive disease”—as in, only affecting the uterus and ovaries—however, some surgeons like Ken Sinervo, medical director for the Center for Endometriosis Care in Atlanta, Georgia, note that it’s truly a systemic illness.
"Though the disease commonly affects the reproductive organs and has some impact on fertility, endometriosis is certainly not confined to those areas alone. The disease can also be found in the gastrointestinal and/or urinary tracts, the pulmonary system and many other regions," Sinervo said. This is a reality that’s often overlooked in the discussion of this “women’s disease”—one that’s been chronically overlooked and underfunded by the medical establishment.
For example, there are reports of endometriosis of the the adrenal gland, appendix, sciatic nerve, nasal cavity, "and many other less common but entirely possible manifestations," Sinervo explained. "The disease has even been found in such distant locations like the eye and the brain, albeit exceedingly rare. It is fair to say that endometriosis is a systemic illness, which has the potential to impact every aspect of an affected individual's life, not just by way of painful periods or infertility alone."
When Latia Lee's right lung collapsed the first time, she was told after her emergency surgery that it was spontaneous pneumothorax—basically, just a fluke. After it happened again, Lee began to research. She realized that both times her lung collapsed she was on the second day of her period.
"When I Googled the word endometriosis I was in disbelief because I was like 'Oh my god, this is me. This is what I’ve been suffering with for 23 years,'" said Lee, who is 39 and lives in Long Island, New York. "I had chest pain, heaviness, a croupy, barky cough along with a dull ache down my neck, shoulder, and arm. I had shortness of breath. I could actually hear and feel crackling when I took a breath.”
Hugh S. Taylor, chair of obstetrics and gynecology at the Yale School of Medicine, explained that endometriosis can spread to organs like the kidneys, and even the diaphragm and the lungs, possibly through the bloodstream. "We know that endometriosis has access to the blood and endometriosis cells are found in the blood," Taylor said. "We have also shown that stem cells from bone marrow and other sources can turn into endometriosis in these locations that are remote from the more common source, the uterus." But it's not known why endometriosis targets these other tissues, he said.
Tamer Seckin, an endometriosis surgeon in Manhattan and founder of the Endometriosis Foundation of America, has a theory that retrograde bleeding or blood flowing back through a person’s reproductive tract during menstruation (rather than out of the uterus), is what causes endometriosis lesions to grow on other organs.
"In some women, a lot of blood can flow backwards, through the fallopian tubes, out into the abdominal cavity encased by a layer called the peritoneum (the abdomen). That blood can mix with the fluid of the abdominal cavity," Seckin said.
Lee found Seckin, who, along with other specialists, performed a seven-hour excision surgery in January 2017. She spent eight days in the hospital recovering.
"Recovery was rough. Chest tubes are so painful. I was out of work for six months," Lee told me. "After my last surgery, I’ve been feeling pretty good. I recently saw my surgeons and got to thank them personally [while I'm] healthy and that was the best feeling."
Jenneh Rishe, a 33-year-old Los Angeles woman with endometriosis, told me about the severe lesions on her diaphragm that took two years to diagnose, despite the fact that she's a registered nurse. Her symptoms started with pain in the right upper side of her stomach in the days before her period. "As the disease progressed, I started having a stabbing pain in my right shoulder blade, shortness of breath, and chest pain. It literally felt like something was restricting me from taking a full breath no matter how hard I tried."
Rishe was officially diagnosed with thoracic endometriosis after undergoing excision surgery in 2016. "I learned later that this would have eventually led to lung collapse if left untreated," she said.
Rishe said she saw multiple cardiologists and pulmonologists and went through a battery of tests, including a cardiac catheterization, which is when a tube is inserted into a vein or artery linked to the heart. She said it's rare to do on a 28-year-old. As time went on with no answers, she started doing her own research and became convinced her symptoms were endometriosis-related. Eventually she found the Facebook group Nancy's Nook, which led her to the Center for Endometriosis Care, where Sinervo treated her.
"The recovery was tough. I essentially had two surgeries in one—thoracic surgery to remove the disease from my diaphragm and a laparoscopy to remove disease from my pelvis," she said. "It took a year of physical therapy to fully recover. So many of my muscles were dysfunctional from having the disease untreated for years. I had to learn how to breathe efficiently again." Rishe said she feels 100 percent better now and has had zero endometriosis symptoms since the surgery.
While cases like Rishe's, Lee's, and mine are not common, they illustrate how serious endometriosis complications can be.
Taylor said that people who have endometriosis on their ureters like I did may have symptoms that resemble those of kidney stones, like flank pain and constant urge to urinate, but more commonly the lesions are small and there are no symptoms at all. But for patients who do have symptoms, "The first sign may be detection of a blocked and dilated ureter on ultrasound or other imaging technique. In severe forms, we may see blood work indicating compromised kidney function." Taylor said that while kidney damage from endometriosis is uncommon, kidney failure can happen in severe cases. If lesions are severely obstructing the ureter, that could block the flow of urine through the tube and make urine back up into the kidney—which can lead to kidney failure.
Karli Goldstein, an endometriosis surgeon at the Seckin Endometriosis Center in Manhattan said that not only does it make sense that endometriosis lesions could grow on the ureters because the tubes pass directly behind the ovaries and run alongside the blood supply to the uterus, but that "it is possible to lose a kidney if this is missed for a long time and the kidney fails."
"Lung endometriosis is rare," Seckin said. "Roughly, we see about ten cases a year in our practice. But it’s rarer to see in other practices, given that we specialize in advanced and rare cases." Seckin said that, in general, less than 1 in 100 endo cases are in the lungs and sudden and complete collapse of the lung would almost always be the right lung, because of how fluid drains in the chest cavity.
Lee was grateful she found doctors who took her seriously.
"I think women are being under diagnosed due to many health care providers not being educated and missing the symptoms," she said.
"I had classic symptoms of diaphragmatic endometriosis, and it was missed. I can’t tell you how many women message me on Facebook and Instagram asking me about the symptoms of diaphragmatic endometriosis," she said. "When it comes to endometriosis we have to be our own advocates. Research and educate yourself as much as you can. Find evidence-based articles on endometriosis. Bring them to your providers. Find yourself an endometriosis excision specialist. Never give up. If you have a health care provider who is being dismissive, find a new provider. Keep going until you find the one who listens and can help you."
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This article originally appeared on VICE US.