Post Hysterectomy, Sacral & Joint Pain

I had a complete hysterectomy 2 years ago.  I started having lower back & pain in hips and rt. leg, buttock within 10 weeks.  I started with a burning sensation in lower back during sleep.  Continued getting worse waking me.  I started having trouble walking with much weekness on rt. side, but have times when hips lock or cause me not to be able to move my feet.  I can't take normal sized stairs now, I have to pull myself or take them sideways.  I have been tested for different arithitis's and lupus, have had bone scans,  MRI's and Cat Scan.  I came back with the gene showing for Ankylosing Spondylitis but was put on Enbrel for about a year or longer at a double dose because I was not reacting to the medicine.  I have been put on different arithritis meds, lyrica, methotrexate, anti-depressants etc.  Nothing seems to help.  The doctors are now starting to tell me that I may never know what has happened to me as my crippling effect gets worse and the pain constant.  They are starting to say that I am just imaging all my pain.  I would like to trade places with them so they can feel what I feel and then they will know that there is no way that I am imaging it.  I recently read a report about a women that had mycoplasma after a complete hysterectomy, but it started in two weeks vs. 10 weeks.  Is there any advice for me out there anywhere that I might be able to get a doctor to check for.  They say I am not showing inflamation (inflammation), or fusion as the ankylosing spondylitis would show.  I have also had shots put in beside my sacral joints and that only let up the symtoms (symptoms) for about 30 days.  Please if anyone can relate or can help please respond!!  Two years has been a long time for not knowing with no answer in sight.

[Annekathryn Goodman, M.D.]

Hi There
I am so sorry to hear about your terrible discomfort. It is unlikely to related to your gyn surgery. If you have normal scans, this is not an anatomic problem. I would suggest that you See a rheumatologist.  Another possibility is a neurological problem. Your primary care doctor should help you navigate the system and find the right consultants.
I sure hope you have a speedy solution.
take care

[Now50]

I have been to rheumatologists, a neurologist will be conducting nerve tests the first part of October.  The problem I am having is they are all looking for something to do with the back and I don't think they are even listening to the rest of the symptoms.  They keep checking me for reaction, which I have, but they aren't checking the tarlov cyst that showed up on an MRI on a nerve on my spine.  They don't seem to think anything about the fact that I tell them I feel like I am turning to stone inside, I can't even get myself out of the bathtub now, I have gained over 40 lbs and my knee joints are too week to carry that load.  I'm not over eating a lot of it is fluid I believe.  They are now telling me that they think I need to talk to a psychiatrist to learn to deal with the pain even though the can't tell me what it is all from.  They are telling me I may never know.  I am getting less and less sleep and hurting all over now, not just in my sacral joints, I can't hardly take it anymore, it is a chore to get up in the morning and try to get to work.  Sometimes I think because I work they don't think it is that bad, but I am so done in after work that is all I can do, my husband is disabled and someone has to pay the bills, I am fighting this with all my might, with no answers.  Once in a blue moon I will have a day with no limping, and slight pain and you might believe nothing is wrong with me, but usually after one day like that I have what I call an episode, and it lasts 3-4 days of barely being able to move, without pain.  I shuffle when I get up in the morning unable to lift my feet, I can't ever do stairs as I can't lift my legs that high, I have to pull myself up with the banister.  My hands hurt so now, in the morning I can barely bend them.  I can't sit very long at all, or I can't get up standing hurts but it feels better then sitting.  Can you forward this to any of your doctor friends who might be able to help me.  I don't know if it is an imbalance in my hormones causing it or what it is, but I was absolutely normal physically until I had the hysterectomy then this started, so I believe it flared something but what I don't know.

[Annekathryn Goodman, M.D.]

Hi There
it sounds like you should go for a second opinion and bring up these issues.
I am so sorry to hear about all your suffering
best wishes

[Wondering55]

A related discussion, Another post hysterectomy weakness case was started.