A couple of months ago while scrolling on Instagram, I saw a few of the endometriosis-related accounts I follow sharing about a woman named Jahmby Koikai, who had apparently died from endometriosis.
Was that even possible? I wondered. I’ve had two endometriosis excision surgeries to remove the disease from around my reproductive and nearby organs, and I’d read that endo can sometimes (though rarely) spread outside that area of the body. Could it spread somewhere that would be fatal for a woman? Are there other potentially deadly complications of endometriosis? I decided to find out.
What is endometriosis?
Endometriosis is a condition in which tissue similar to the lining of the uterus grows outside of the uterus. Symptoms include painful periods and pain during other times of the cycle (including during sex), heavy bleeding during menstruation, infertility, pain during intercourse, and other symptoms such as gastrointestinal problems and fatigue.
There is no cure, and the only way to definitively diagnose endometriosis is through laparoscopic surgery. Excision surgery is the gold standard for treatment, but (as was the case with me) even with a well-trained surgeon, the disease can come back.
Endometriosis affects about 10% of girls and women worldwide, yet to date very little has been done to investigate its causes and possible treatments and cures, especially compared to similarly prevalent illnesses. BBC reports that especially in countries like Kenya, where Jahmby Koikai was from, awareness of the illness is quite low, among both laypeople and medical professionals.
Endo is not just a reproductive disease
Koikai, though, did know that she had endometriosis. She was a radio host and DJ who used her popularity to advocate for other women suffering from endo. Like me, she first experienced symptoms at age 13, and like me, it took years for her to finally receive a diagnosis—in her case, 17 years. During that time, the disease progressed. She eventually developed thoracic endometriosis, which led to the collapse of one of her lungs in 2015. It was not the last time, according to the BBC, and complications from her thoracic endometriosis resulted in her death this year at age 38.
Thoracic endo and other forms of extragenital endometriosis
Extragenital endometriosis, or endometriosis that occurs on nonreproductive organs, affects about 12% of women with endometriosis, and the most common place for endometriosis to occur outside of the abdomen and pelvis is in the thoracic cavity [1]. Some women with thoracic endometriosis don’t experience any symptoms, but 80% will experience a collapsed lung, and others will experience shortness of breath, chest pain, and/or hemothorax (in which blood collects in the space between their lungs and rib cage), cough up blood, or develop lung nodules. Ideally, a woman with thoracic endometriosis would have it removed by a thoracic surgeon experienced in endometriosis, during the same surgery as her pelvic endometriosis removal by a gynecologic endometriosis specialist.
Thoracic endometriosis may be the most common form of extragenital endometriosis, but endo can appear on other organs, too. In fact, it can appear anywhere. Very rarely, endometriosis can show up on the kidneys, eyes, liver, pancreas, brain, bone, heart, skin, and nasal cavity. Sometimes, surgeons can miss endometriosis on the diaphragm during pelvic or thoracic endometriosis excision surgery because it can hide behind the liver and other organs in the upper abdomen. Women with diaphragmatic endometriosis may experience symptoms such as shortness of breath and pain in the upper GI tract, chest, shoulder, and right or left upper abdomen. Fortunately, once it’s found and removed, diaphragmatic endometriosis is less likely to recur than endometriosis in other parts of the body.
Do you have thoracic endometriosis or another type of extragenital endometriosis?
If you suspect that you have endo and you’re looking for diagnosis and surgical treatment, it’s important to find a surgeon who’s well trained in excision surgery. This article can help. And if you suspect that you have endometriosis outside of your reproductive and nearby organs, you’ll definitely want to bring that up with the surgeon when you meet with them.
If you require surgery, who you have in the room matters immensely
If and when you have surgery, you’ll need the right surgeons in the room—surgeons who are experts in identifying and removing endo in the specific areas where they suspect it’s growing. This might include a cardiothoracic surgeon, as one example, for suspected thoracic endometriosis. Not all surgeons are appropriately trained for endometriosis excision surgery, so finding one who is may require traveling outside of your local area.
You don’t have to wait until surgery to get symptom relief
In the meantime, a good restorative reproductive health professional can work with you on ways to manage your symptoms to try to improve your quality of life. For example, I’ve found some endometriosis pain relief in the past through utilizing pelvic floor physical therapy. Using a fertility awareness method can help you understand your symptoms better, and there may be other symptom and pain management options you can try as well.
Endometriosis can be a frightening diagnosis, particularly when you hear news like the tragic death of Jahmby Koikai. Fortunately, help is available, and awareness of that help and access to it is growing. Remember, the very first step is understanding your symptoms and finding a provider you trust.
Additional Reading:
5 lesser-known symptoms of endometriosis
Endometriosis is usually diagnosed in adulthood. Can it show up in the teen years?
Managing endometriosis pain with fertility awareness
References:
[1] Nezhat C, Lindheim SR, Backhus L, Vu M, Vang N, Nezhat A, Nezhat C. Thoracic Endometriosis Syndrome: A Review of Diagnosis and Management. JSLS. 2019 Jul-Sep;23(3):e2019.00029. doi: 10.4293/JSLS.2019.00029. PMID: 31427853; PMCID: PMC6684338.
