Does anyone know if endometrios can be in the spine? I have haemangioma in spine plus lower back and hip pain. Feel I'm on the route to disability as walking is getting so difficult now. I had a laparoscopy two years ago and had deep endometriosis removed from sacro-iliac ligaments and ovary. Gyn then discharged me with no follow up, saying the problem was sorted. Since then the pain has got unbelivably worse, and some days I can barely walk. I also cannot urinate properly and now have to sef-catheterise daily or I get infections. Last year spent a week in hospital with urinary retention. From being super fit and a regular at the gym, I am now very weak in the hips, abdomen and legs, and nothing I do strengthens them. Was told my endometriosis was only mild and it is all gone now so am complaining about nothing. Just think doctors don't believe me any more. Now I can't bend, squat, walk distances, I limp and get stopped in my tracks by hip pain, but my doctors think I've always been this way and am just unfit. What can I do about assumptions and stereotypes? Feel like a woman twice my age. Gyn said it was impossible for endo to be anywhere outside reproductive regions. Kind of feel this is too much of a coincidence as all my problems started from the surgery. Any suggestions?
Just bumping this up as I would really appreciate a response from anyone who knows about this. Endometriosis query may be a load of nonsense or not but am just trying to make sense of this life-changing problem with currently no answer. Am so ashamed of how I walk now. Can anyone help??? Severe pain issues also.
Hello, I am very sorry you have to suffer through such pain. I am a 3 year endometriosis patient and have had 4 surgeries (average every 8-10 months) I can tell you a bit about it. It can grow on your brain,kidneys, and lungs (i think are the main 3) but not your spine. It does not cause any symptoms from growing in these areas or any comlications, so they say. There are about a dozen surgery specialists in the U.S. who can do anything good for you. If you would like to tell me what state you live in i do have a list of them somewhere here. I have had so far pain in my back (severe),spasms in my vaginal and rectal area, extreme hormone problems (as in i know when they are coming and well i get hyper lol). If you had a surgery and a doctor with not much knowledge of it you may have had it half removed. If you are not taking any kind of birth control pills since the surgery it may come back. Endometriosis is a disease, not something that goes away ever even after a hystorectomy (but some have had much pain relief with that method). I also have a problem producing cysts on my ovarys due to the endo, which i now have 1 ovary because of. My last surgery was a mass of mess because of ruptures of them and i let it go for 10 months instead of 8. I do have leg pains that shoot down my legs also to mid thigh. The main things i can only sugest is to find a gynocologist that is decent to put you on b.c. pills or some kind of endo specific pills (which i don't recomend) and change your diet as much to clean as you can get it (minus a bit of red meat if possible) lotta veggies. Write back if you would like names of a specialist near you and i can get that, but you may have to travel a bit. Exersize may be hard but try to push it, i could not unfortunately. Massage may also help if you are able to get some.
Oh yes and i also have a hemiogama (whatever that is) of the spine. Makes me wonder too! My pregnancy triggered my endo but alot of women say it helps theres, it's a very tricky disease. So sorry you are having pain and problems with it also.
I am so sorry you are going through this. I too am having horrible pain and all the doctors are telling me something different. I am going to have a MRI on my hip to see if the endometriosis is growing there. If not, the pain management doctors have said it is the pirformis muscle and it will not get any better, it will only get worse. That is the muscle that attaches to your spine and runs down your leg. It gets used so much and never gets a chance to rest. I can not do anything, use a wheelchair now becasue I can not walk, have a hard time using the rest room. I too used to be very physically fit and active and many days I think I am nuts. I have been to doctors who have told me I am nuts. Pain managements has been my savior.
I hope the doctors find something for you and all of us. I think these days they are really too interested in being sued, and making and keeping their money to give good medicine any more.
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