Endometriosis & the Spine

Spinal_column_curvatureEndometriosis 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?

Spinal Endometriosis:

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.

Diagnosis:

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.

Treatment:

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 or slow the rate of growth 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.

Conclusion:

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.

Have you been diagnosed with spinal Endometriosis?  Please, share your story.  It’s a whole new world to me.  Feel free to click here and share with your EndoSisters.

Resources:

Back Pain Online

Unbound Medicine

U.S. National Library of Medicine

U.S. National Library of Medicine – 2nd link

U.S. National Library of Medicine – 3rd link

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

12 thoughts on “Endometriosis & the Spine

  1. I have stage two spinal endometreosis it first started in my pelvis to spine . I’m still under going all kinds of “lab rat” tests but the pain is like no other I’d give child birth with no meds a 3 out of 10 in comparison.

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      1. Is it possible to have your back pain be the primary symptom? Both my daughter and sister have had surgery that confirmed endometriosis. I have always felt I lucked up in not having that. They have severe pelvic pain which I don’t, (just normal achy throbbing for a couple days) however I have had severe back issues (the only one in my family) since I was 29/30, I am now 44 and just recently got seen by a back doc who said that it looks like just normal aging degenerative disc issues from an x ray – no mri. I’m not sure why I would have had that at 30, but didn’t think to ask that – just took the info as an answer. The physical therapist he sent me to said that the severe pain I have every time I sneeze (I have to brace myself or the pain will drop me) sounds like more than disc degeneration because the nerves have to be involved for sneezing pain like that. Anyway, my little sister was very sick this year and had to have surgery. They found endometriosis all over her intestines which was causing her problems keeping food down. I didn’t even know it was possible to have it outside of your reproductive system, and I started doing research because I have had significant digestive IBS since I was 15 and the idea that endometriosis could affect your intestines was new. I had never heard that in all the tests I went through growing up. While researching recently., I saw that severe back pain can also be a symptom too, so I began to wonder. I am just trying to understand why my back issues(the intestines I have just had to manage since high school) are getting so much worse and are now fictionally debilitating at times making me feel like an old lady already. I would’t even have considered endometriosis as a
        possible cause if both my sister and daughter didn’t have it – and I didn’t just learn it can present differently than just severe pelvic pain. I just wanted to hear from someone who has this on their back/spine to see if I’m just grasping at straws for answers.

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    1. How could you tell you have it? I have stage 4 endometriosis and adenomyosis and I think I might have it in my spine. At times when I move certain ways it feels like I can’t move and my back hurts all the time. How did you go about getting diagnosed?

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    1. Hey Summer,
      Wondering if I could contact you privately and ask you a few questions? My aunt had terrible Endometriosis, and also had it in her spinal region. It was so bad that she had a total hysterectomy at age 24. She never had kids. Anyhow, I’m following in her footsteps and have already had two surgeries for Endometriosis. I’m having horrible pain and am currently searching for a new gyno (I’m in Michigan). I can’t seem to contact you via this website, would you mind sending me an email if you see this post? Thanks!
      petiteanomaly (at) yahoo (dot) com

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  2. I had surgery a year ago and have stage 3 endo. I have had severe back and sciatic pain go two years. My endo was on my bladder uterus and intestines. I asked my doctor about it and he told me to try fibrovan which is an herbal supplement that suppresses endometriosis and he said if my pain goes away from taking it… It’s most likely the cause. I also have polycystic ovarian syndrome and hashimoto’s hypothyroidism, I just recently started thyroid medications since hashimoto’s can also cause joint pain I want to see if my symptoms improve with that alone first

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  3. I, too, would like to know how your spinal endometriosis was diagnosed. I have had one area on my back/spine that used to flare up the first 2 days of my period and cause extreme pain, nausea and diarrhea. Now that I have had a total hysterectomy and oophorectomy, I continue to have pain in that same are. My MRI just showed a bulging disc at T7/T8 but I’m wondering if that could have been misinterpreted and might, in fact, be endometriosis. What type of doctor do you see that is so forward thinking? Every doctor I’ve talked to about this immediately dismisses endometriosis on the spine. I’d really appreciate any feedback!

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  4. Almost 2 years of back pain and sciatica getting worse with each period and worst of all with middleschmertz on right side. 2x ultrasound tech has said my right ovary looks funky and even said she could tell a cyst burst and fluid was in my pelvic cavity. Gyn says it’s all totally normal. I just had an MRI of my spine but it was 2 days past the horrible ovarian pain so I’m anticipating it all looking fine to my male osteo. How the poo do you get a Dr to consider it?

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