15 months post hysterctomy and severe burning pain

Hi Gail, 

Thanks for your response, it feels good to talk with people in the same situation. 

I also felt like my personality changed completely when I took Lyrica. It was terrible and lots of nightmares. Cymbalta does not affect me as much but suffer from sweats :-( Not nice to sit in the office and feel sweaty most of the time. Also the menopause gives more sweats so not an ideal combination. 

I try to practice mindfullness, it helps somewhat, I do try not to worry too much and just live in the moment and be happy about the good days I have sometimes. I also love being out in the country house and just sit in the garden reading a book. This gives me some calmness. I am quite a positive person normally and try to hold on to that but then somedays it just feels hopeless. But trying to find health even though I'm ill. I know I can. Today I'm meeting friends at a b-day party, looking forward to that :-) 

Take care 

If anything, things are worse.  I now have constant constipation, terrible dryness and it is a constant daily battle with urinary infections.  I was told none of this before the surgery.  The trouble with nerve pain is that there is not much that can be done.  If I could just turn the clock back, I would have done much more research on what a hysterectomy truly means for a woman.  I know there are cases where it must be done.  But the medical profession seems to think it is perfectly OK to take out all a woman's female organs yet if it were a man with a similar condition they do not remove all his male parts.

Some have found relief from nerve pain with having a spinal cord stimulator implanted.  As for me, I don't feel comfortable having anything like that placed near my spinal cord.  It is the only other option besides medications that I know of.  Oh yes,  there is also an outpatient procedure (done by very few doctors) called a ketamine drip which has provided some measure of relief on an individual basis. However, my insurance won't pay for it for me so it is not an option.  One must go, I think, 3 times a week for a certain amount of time.  They will usually know right away at start of treatment if it is going to work, but cannot predict how long the relief will last.

These are the only options I know.  Living with this has made me absolutely miserable, since before the surgery my RSD was mainly confined to my upper body.  Now I must deal with all sorts of new pains and terrible constipation on top of it all.  It is no wonder that there is a huge percentage of women who develop depression in the years following this procedure.

Sometimes I feel that as woman our concerns are brushed aside or not taken that seriously.  

Hello gail,

I couldnt help but reply to your post when I googled hysterectomy nerve damage, which I recently found out I have.

I feel for you reading how you feel and your pain, its just not right.

I am approaching my 2nd year of being in chronic pain, having a full hysterectomy in 2013 (full incision across my bikini line), then having another surgery last year to correct scar tissue, now they tell me I had nerve damage.

The pain is unbearable, I have tried everything, As Soon as I woke up, something was not right, I was in excruciating pain every day all day.

I could not eat a full meal for a whole year and I was basically living on porridge, cereal and fruit, as soon as I would try eat a normal full meal it felt as though there was a brick in my stomach and my abdomen would swell up so large.

I am still suffering from this pain all across my incision and abdomen, i cant bear having anything touch my skin around my abdomen, i cant wear underwear and have been wearing maxi dresses for 2 years now, even in the winter in the snow, i just cant see how this is normal, doctors have tried to convince me this is in my head.

Standing, sitting for long is just unbearable and the pain is constant like sharp stabbing pains all across my abdomen and incision. Even when I laugh, cough or sneeze. 

Pain killers work (temporary) but the side effects just dont suit me, I cant function on them. They just expect women to live on these for the rest of their lives?

I have my first accupuncture appointment coming up, did this work for anyone??

But I'm so angry and frustrated, I feel like everything is in slow motion like I am begging for something to be done about my pain.

Many people have told me to complain, I dont know if its even worth it?

How are you coping with your pain? 

Do you also find that laying flat on a bed is the only time your your feel slightly better?

I just hope something can help us all gail, I am praying xxxxxxx

Hi Gail I had my radical hysterectomy 41/2 yrs ago and still have these same symptoms the burning pain and the tearing feeling I was beginning to think I was crazy too. It is so comforting to read the texts on this page. Now I know I am not crazy and all this pain and burning is real. Over the years I have had a few surgeries but the last two because of uterine cancer 2010 and right hemicolectomy 2013 bowel cancer have really knock me for six. To all the lovely ladies on this site I feel your pain but I am kind of relieved as now I know I am not alone. It is so true that unless you have experienced   Theses side affects from surgery you truly don't understand the mental anguish they cause. I am extremely grateful to be alive I love my family and close friends but I would just like to wake and not feel pain and heat in my body. Thank you again for all this great information Gail 🌻🌻🌻

Thankyou ladies for sharing your stories...experiencing similar symptoms to you all  it certainly gave be the 'wake up' I needed. My immediate response was "ooh no, I haven't got months to get back to some normality!!" I also looked up some of the orthodox treatment and decided medication and further surgical treatment wasn't going to be my path in the first instance.

To my mind this degree of nerve injury was about branches of nerve pathways so decided the two other specialities that deal with that are chiropractic treatment and accupuncture.

I was skeptic but hopeful when I rocked up for the first chiropractic session. With only managing limited 'actviating' around the sacral region there was immediate improvement and within an hour of the treatment the burning reduced to tingling. The next morning I could touch the affected abdominal area without wincing.

Three days later I am returning for a second session - still getting some symptoms but not as debilitating as the symptoms were at the beginning of the week.

Even if I get no further improvement than this 'tingling' at least is not wearing me down like pain/burning I was getting.

Needless to say I haven't got to accupuncture!

Hope this gives others hope if you are experiencing post-op nerve injury.

Andrea

Hi I was searching on the internet for nerve pain around the abdomen I had spine surgery 3 years ago where they cut me from growing to growing in the front across below the bikini line and of course in the back about 8-9 inches up my spine as they gave me a tri level fusion I have been having severe nerve pain going across the surgery scar on my stomach and then across my entire back lower and I am just wondering if this type of nerve pain actually happens to women who have had surgery in the lower abdomen not just a hysterectomy I think maybe is possibly abdominal surgery that the scar tissue does off of things to one I am in so much pain all the time and on lots of pain medications from Pain from the spine surgery SI joints destroyed this last Pain is about to drive me crazy thank you for listening although I have never had her a hysterectomy I am experiencing the same kind of pain

IN 1992, I was diagnosed with endometriosis. The burning in my feet and hands had begun, before six months,cause I was fighting my Ins. Co. to pay,,couldn't see it, didn't believe the Endom. Was there. No help back then. Right before. My surgery, my feet to my knees started burning. I thought all my dreams would come through after this hysterectomy. Afterwards, the burning got worse and worse. I was cut from one end to the other. Year later, again. 1st Dr. Didn't get all scar tissue. Removed large mass in front of colon. Another Gyn open me cup! Same place. During recovery a whole come opened and it was bad! Over the years I have been told, its all in your head, but, I feel thatvREAL HARD BURNING pain all over my body. I have been suffering too long. I takec400mg neurontins, four times daily, it dies help. After trying ultram, which just causes you to need more and more to stop pain. Been there, tried that. I had gotten to where functioning was over. Couldn't keep my grandkids, leave house or even carry on a direct conversation. I did all I could, I went to t pain center and took their time released pain meds. Life is hard . the older I get, the worst gets. I never knew about this hysterectomy pain. Thanks to you all for you opinions. I finally found a Dr and staff that treats me like a human being. After 22,almost 23, I just want to finish out my time with myblove ones and no matter what pain oir depressions, Jesus Christ. I believe in Divine Miracles and I still have faith. God Bless you all!!

I'm so sorry that all of you are experiencing this horrific pain!  Has anyone received help from the medical community yet?  I had my complete hysterectomy 3/25/2015 and am still in a lot of pain.  Every time I walk too much at work, the pain is so severe I end up in bed for 2 days or more.  I'm also bleeding.  The Dr says that is due to granulated tissue so he is doing a silver nitrate procedure on Monday.  I thought I would be healed by now.  And on top of this, surgical menopause too!  Ugh.  This is ridiculous and infuriating!

Just found out today that my left ovary is adhered to my bowel and my right ovary is adhered to the vaginal cuff.  Had a hysterectomy 22 months ago that left me in worse pain.  I have been to over 25 doctor, chiropractors, physical therapist, etc., to be told that there was nothing wrong with me and be offered antidepressants.  this surgery stole my life.  I have bladder issues, sexual dysfunction, leg numbness, and now searing, burning pain across my groin, down my legs, up into my abdomen.  The doctor today finally believed me today and ordered an ultrasound.  Sh has suggested going in to undo the adhesions, cleanup a bit, take some additonal biopsies as to not miss any endometriosis, and just get a look at what is going on in there.

My brain is screaming no surgery.  Don't fall for it again.  The hysterectomy stole your life and left you worse off.  Of course we all know that scar tissues returns so truly what is the point in having another surgery.  To be left in more pain!?  I cannot find any positve adhesion stories out there.  They all say how they are on surgery number 7 or more and in worse shape.  I can barely function now, I mean are these women having to get disability at ths point?

I don't know how to sort through this decesion and if anyone has positive feedback please send it my way.  I thought I had done my homework with the first surgery, but learned the hardway I had not.  I don't want to blow it again.  I am young and hvae 4 kids still at home.

Thanks for any feedback in advance.  I am just paralyzed with fear right now.

Hi I am 46 and have had a vaginal hysterectomy 6 years ago. I was in a huge amount of pain just a couple of months later. The doctor's were saying it's all in my head. 2 years and many trips to the ER I felt I had another cyst but it felt different. After keeping an eye on it they decided to remove the cyst. They couldn't do the operation as they couldn't get through the adhesions and scar tissue which was stuck to my bowel, bladder and the inside of the walls of my abdomen. I had surgery which removed the cyst along with ovary and I had an operation to remove all adhesions which they could get. It's now back with nerve damage which causes awful burning but also severe abdominal pain. I can't even shower without being in agony so I feel for you so much. It's made even worse as it's something that isn't visible to anyone and no one understands the awful pain.