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Endometriosis in the spine

Hi. I recently had back surgery for a conjoined nerve root. The surgeon said he found some "stringy fibrous tissue" attached to my vertabrea. He said he didn't know what it was, so he just cut it. I also have sever endometriosis. I know that endometriosis in the spine is very rare/never reported, but I was wondering if it's possible that this is what it was? The way he described it was exactly like Endo.
Tina


This discussion is related to Can endometriosis be in the spine?.
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Avatar universal
I have simular symptoms and yes it does wreck havock on a marriage!  I have had it for 20 some years and have had 4 laporoscopys.  I just found a Endometreosis surgion.  SPECIALIST!  I havce never heard of any Endo. Specialist before.  He says that most OBGYN's and Fertility specialist do not take care of Endo. right and therfore it always comes back.  You have got to look him up!  I am telling everybody that I hear that has Endo.  I have not seen him yet, but I am sending in some paper work so he can give me a free consult over the phone.  He is in Georgia and I am in TN.  Well worth the trip!  I have searched the web and have not found one bad comment about him or his office.  His name is Dr. Sinervo.  His place is The Center of Endometriosis Care.  Google his name or place and you will see why Iam so excited about his place.  He makes everything make sense of what Iam going through.
Good Luck
Rhonda
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Avatar universal
I am having similar things with neck and back.  I just found a great Dr.  I have not found a bad review of him or the clinic yet.  It is the Center for Endometriosis Care.  The Dr. is Dr. Sinervo.  i am just finishing up my paper work to send to him for a free consult over the phone to see if he can help me.  I am in TN. and he is in Georgia, but the drive would be so worth it if I can get relief and get my life back like all the testimony's say that had him do thier surgery.  Hope all of us Endo. sufferers can get some help.
Good luck,
Rhonda
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Avatar universal
Hi, I have a had a similar experience a to yours and  was wondering you have found any relief for the endo in your back? I have heard craniosacral massage can be helpful as well as the anti-inflammatry diet is helpful. Are you in the States. Im in Canda
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Avatar universal
Im new to this i had a hysterectomy in 2005 because of endometriosis was ok for a bit then suddenly started having awful pain in my back then my neck and the pain in my neck is the worse reading all of these forums does anybody out there think that there is or might be a connection bloody hell i know what the pain is like some days i can't even walk, but nobody listens they think im a moaning minnie

Caroline O'Hara
Helpful - 0
1466208 tn?1286663962
I am new to these forums but I sure do like the idea of people understanding.  I am 23 years old here's the story -

At 17 years old i began having severe pain inside my bladder.  Felt like a constant, severe UTI or bladder infections.  But test after test, no infection showed up for two years.  Finally i visited my first urologist, he did a "scope" and looked inside my bladder.  Said "I see abnormal tissue, dont know what it is, if you still feel pain I guess come back and let me know"  WHAT?! Of course im still going to feel pain! you didn't DO ANYTHING!
So off to urologist #2 I head.  Armed with pictures from the first guy, I show the new guy. He does a scope again but puts me under and with a laser, burns off all the "abnormal skin" inside my bladder (two fairly large groups).

Now upon discovering I have HPV - I head to an OBGYN, again armed with my newly HUGE medical file I confront him.  Within seconds of looking over my file and talking with him he says he is pretty sure i have what is called Endometriosis and that is was the responsible culprit for the abnormal skin in my bladder! AH HA! boy it felt nice to have answers.  Im scheduled for an MRI, upon seeing the scar tissue he is now sure that it is in face Endometriosis.  I went in for my first Laser ablasion laproroscopy (approx.2-3 months after the first surgery in my bladder).

During this surgery he finds that my endometriosis has grown slightly abnormally.  Instead of attaching to the more normal of places ( reproductive organs)  It has spread all over the back lining on my pelvic wall, all outside of my bladder, and slightly on my ovaries.  

After surgery he puts me directly onto DepoProvera in hopes it will control and lengthen the amount of time before the endometriosis grows back.  This is does, and quite well.  I remained pain free until around August of 2009.  So not quite 2 years.  In which time I began dating my husband and got married.  Unfortunately, after September of 2009, Progressively EVERY month the pain got worse and worse and worse.  This time namely in my very lower back.  By September 2010 it had become unbearable and I headed in for my second laser ablasion surgery.  This time it was robot assisted however, which really helped pain level and healing!

Upon getting in there, this time, he discovered my uterus "hanging" by fiberious strands off of my bladder, it had much more veraciously attacked my ovaries, again lined my pelvic wall - and - here's the kicker, it was on the opposite side of my pelvic wall inside my spinal column.  Unfortunately, due to this location, there was no way for my doctor to reach this endometriosis.  This - he says - is the culprit for the excessive amounts of pain in my lower back, causing me headaches, lack of sleep, pain the my joins (especially hips).

Now where are we?  Well, as I mentioned.  I am now 23, it's been an awful on and off 6 years of pain.  Now this terribly disease is thoroughly affecting my quality of life, and unfortunately my husbands also.  I really think that's the hardest part, we used to be best friends and now Im just as drag anymore.  We want children but not right now, we want some time to enjoy eachother first.  So here are my options- knock out a kid or two then have a hysterectomy, take a GNRH agonist (fake menopause) for 3 - 6 months and hope it holds us off (while mind you having miserable side effects) long enough to "enjoy" our relationship before we have kids.

Just wish they knew a cure for this terrible disease.    

Anyone who has been through this, have any words of advice? Encouragement?
Helpful - 0
Avatar universal
I have been feeling like I have been going crazy for years trying to figure out what was wrong I believe I am getting so close to one reason why I am having these symptoms. We are not going crazy sometimes we have to be our own doctors,  the doctors out their are too buzy and like to treat us like a number.....I beleive alot of them were at toga parties instead of studying when they were in school. I just wish there was a doctor out their that really cared to find out what we have......
Endometriosis Within the Sheath of the Sciatic Nerve is very rare but I thought you might want to check into it......
also copy and paste this below and you can see mri's of this
    http://journals.lww.com/jspinaldisorders/pages/results.aspx?k=%20right%20side%20preference%20in%20sciatica%20associated%20with%20gynecologic%20conditions&Scope=AllIssues&txtKeywords=%20right%20side%20preference%20in%20sciatica%20associated%20with%20gynecologic%20conditions&ThisIssue=http://journals.na.lww.com/content/jspinaldisorders/2009/07000
            ----------------this too-------------------------------              
Catamenial mononeuropathy and radiculopathy: a treatable neuropathic disorder.
I am still doing intense search on this to find a specialist in Wisconsin I have been to neurosergons and obgyns, endo,  you name it but before any surgury  I want to make sure I find someone who cares and specializes in what I have..
Thanks,
Jane
Helpful - 0
Avatar universal
I have been operated on twice now, the last time was 3 years ago, I had to have a hysterectomy, I told my doctor then that the pain in my back was as bad as all the other pain I was having. Unfortunately she is a gyn and could not preform surgery on my back. Now the pain is so bad, some days I'm limping around, some days I swear it is affecting my neck as well and can hardly move it at times. The pain is bad, but the emotional state that this disease puts a person in is not good, some days I am curled up on the couch uncontrollably crying, I can't stand it anymore. Before each surgery, I had a siezure, I guess my body's way of saying enough is enough. Recently I think I started having them again and I'm scared. I don't have any insuance so therefore no doctor. I believe endo can be in the back, and I believe I have it, and sure do wish someone would take it out before I go crazy.
Judy
Helpful - 0
1 Comments
I agree with you on thinking it can grow on the spine . Why not it can grow everywhere else? I have the same pain in the back from the waste down and it seems to radiate from the tailbone area for me and then the upper back gets numb. I also have been having seizure like episodes but have not been diagnosed. I see no point of a hysterectomy, to me it seems pointless if they can't even remove all the endo from the body, so it will just regenerate because the pituitary gland . Also they will want to put you on hormone replacement therapy. Which we all have been told estrogen is the hormone that makes endo grow. I get so frustrated with my dr when he says the answer is a hysterectomy if it growing on my spine. I think that is a bunch of B.S. ! It will line his pocket with money, and leave me feeling crazy and worse than before. I don't see how they don't think logically ? They say one thing and contradict themselves with what they think is a solution . Meanwhile we are left feeling like a burden and in pain. The seizures are horrible mine last hours and I know it is telling me listen to yourself.............. The dr's aren't going to have to live with me after they cut out my womanhood. Now my dr is trying to take me off my diazepam which I have been on 8 years . So I  either have to see a phsychiatrist , or go without and endure more seizures.

































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