Endometriosis and THE WHAT? You mean to tell me that this disease can be found on your…spine? A disease typically diagnosed by gynecologists can grow there? Okay, now this is like some bad sci-fi horror film…But alas…it’s true. A girlfriend dropped the bomb last week that she has it on her spinal cord. So now it’s time to pick my jaw up off of the ground and hit the books. What the hell, Endo. Really? Is nothing sacred?
Endometriosis on or in the spinal cord, vertebrae, or nerves is considered extremely rare. However, it has been found to be wreaking havoc for many women. It can cause symptoms of back pain, weakness, incontinence, sciatica pain, radiating leg pain, groin pain, and monoparesis (weakness to the point of near-paralysis), just to name a few. These symptoms may always be present, may only be present during your menstrual cycle, or may worsen during your menstrual cycle. On top of those symptoms, the Endometriosis also does it’s usual thing: inflammation, scarring, creates pain, etc.
In seven different published case studies dating from 1968-2011, women ranging from age 26-46 complained of the aforementioned symptoms. Each was found to have Endometriosis inside or on the exterior of her spinal cord, nerves, or vertebrae; mostly in their lumbar spine, but one had it in her thoracic spine. Six of these women had surgeries to relieve the pressure in their vertebrae and nerves, as well as excise the implants and lesions. One woman did not have surgery, but underwent GnRH treatment. Six of those women stated that they were pain free after their procedures, and the seventh said she only had occasional pain after her surgery.
Your physician may be able to pre-diagnose spinal Endometriosis through an MRI and lab work; however, (just like we’re used to) the only way to truly confirm the presence of Endometriosis is through surgery.
Surgery : Endometriosis lesions and implants that are visible to the surgeon are excised or burnt off, and tissues are sent to the pathologist for testing and confirmation. Due to the sensitive and vital tissues of the spinal cord and nerves, complete excision of some Endometriosis may not be possible. A procedure to alleviate the pressure on nerves, vertebrae, or the spinal cord caused by the Endometriosis hemorrhaging may also be performed.
Birth control, hormone therapy, or GnRH treatments are also recommended to suppress symptoms of Endometriosis. Some women swear this has helped with their pain. Others, not so. As a last resort, (as usual…) we hear that a hysterectomy or oophorectomy (one or both ovaries are removed) may help with recurring Endometriosis symptoms, including the back and leg pain that may be associated with spinal Endometriosis. I personally believe that a hysterectomy is not a cure for Endometriosis. There have been numerous studies, time and time again, of women with recurring Endometriosis, sometimes decades after their hysterectomies.
This is terrifying. Every site, study, or webpage I went to tonight in research pointed out that these pain and neurological symptoms should be taken very seriously. Have a talk with your doctor if you wish. Your spinal cord and nerves are very finicky and need to be well tended. As usual, this blog is not meant to scare you : only educate you. And I. And there are so many reasons why you may be suffering from back pain, including ovarian cysts as a cause.
Have you been diagnosed with spinal Endometriosis? Please, share your story. It’s a whole new world to me.
*Updated March 27, 2019*
European Spine Journal (Abstract, May 2014) – Low Back Pain Tied to Spinal Endometriosis
Neurosurgery (Abstract, Aug. 2006) – Intramedullary Endometriosis of the Conus Medullaris: A Case Report
Climacteric (Abstract, 2008) – Endometriosis in PostMenopausal Women Without Previous Hormonal Therapy: A Report of Three Cases
Word Journal of Oncology (see Table 1 for a breakdown of those seven case studies)
~ 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