Another rare location I’ve heard can be invaded by Endometriosis is our brain. Yep. Our gray matter. But, again, curiosity led me to find documented cases, symptoms, and treatments. So I’ve scoured the interwebs for just such a thing, but it was difficult to find much of anything! This is not meant to scare anyone, or to create an Army of Hypochondriacs. It’s meant to let everyone know that, yes, it does happen. And this is what to look for…and what can be done for it..
From what I can find (which was very, very little), it appears that symptoms may include headaches or seizures. As of 2010, there have only been 3 documented cases of cerebral Endometriosis (at least in English-language literature).
Down to the nitty gritty science! (These studies can be accessed below in “Resources”):
A study published in the April 1987 edition of Journal of Neurosurgery was of a 20-year-old woman who had suffered from headaches and seizures for the past 3 years. CT scans showed a cyst on her brain, which was surgically removed. It was “a chocolate-colored cyst,” which was biopsied and discovered to be Endometriosis. I do not know if she had a previous, or subsequent, pelvic Endometriosis diagnosis.
In December of 1993, a study in Neurology was presented of a 31-year-old woman who suffered from repetitive seizures on the first day of her menstrual cycle. She underwent surgery to remove the lesions on her brain and was subsequently treated with Danzanol. Her symptoms were controlled. Unfortunately, the abstract doesn’t give any details, but intimates that the lesions were Endometriosis. Again, I do not know if she had a previous, or subsequent, pelvic Endometriosis diagnosis.
In June of 2004, the American Journal of Roentgenology published a study where a 40-year-old woman was suffering from issues with her gait (walking) and also headaches. She suffered from a condition (hydrocephalus) which built up fluids on her brain. When she was just 2 months old, she had surgery (ventriculoperitoneal shunt) to relieve that pressure, and had repeated this procedure multiple times throughout her lifetime. Her last procedure was 2 years prior to these new symptoms. She had CT and MRI scans performed to make sure that her shunt wasn’t blocked, causing fluid build-up and her new symptoms. They were not; however, the presence of a cystic mass was found on her brain. During surgery to remove the cyst, it was noted to be filled with “chocolate-colored fluid with flecks of yellow.” A biopsy of the mass met the criteria for Endometriosis. Her symptoms improved after the cystic mass was removed. A review of her medical history did not show any issues with infertility or pelvic pain. And, unfortunately, since her symptoms had resolved, she did not have a laparoscopy, and we may never know if she had any pelvic Endometriosis.
But how does Endometriosis end up on a brain, nearly the polar opposite of where it is usually found? Physicians and scientists have nothing but theories on the origins, inner workings, and migration of Endometriosis: 1) you’re born with it in your pelvic area (mullerian ducts, peritoneum); 2) retrograde menstruation may allow for the implants to travel throughout the body via the lymphatic or vascular system, or even through surgical manipulation; 3) a combination of 1 and 2; and 4) it’s a disease brought on by other issues, such as an immune deficiency. In the case of the 40-year-old woman with the shunt surgeries, they wonder if her shunt scarring was a pathway for the Endometriosis to invade her brain.
The authors of the 2004 study stated it best when theorizing how Endometriosis can be located in extrapelvic regions:
Although endometriosis is one of the most frequent problems in gynecology, its pathogenesis remains controversial and poorly understood.
My interpretation : dedicate more time, resources, and energy to truly understanding Endometriosis! Not only how and why it forms, but how to stop it…
Think you may have Endometriosis on the brain? Sounds like such a crazy notion…but if you’ve suffered from unexplained headaches and seizures, you may want to talk to your physician or get a referral to a neurologist, and have some imaging studies done to search for any masses or cysts. From what I read, it could be in sync with your menstrual cycle, or not.
(Updated March 25, 2019)
American Journal of Roentgenology : 2014 (Article) Cerebellar Endometriosis
U.S. National Library of Medicine : 1993 (Abstract) A Case of Cerebral Endometriosis Causing Catamenial Epilepsy
U.S. National Library of Medicine : 1987 (Abstract) Cerebral Endometriosis. Case Report
U.S. National Library of Medicine : 2010 (Article) Endometriosis – Morphology, Clinical Presentations and Molecular Pathology
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa