Nerve pain for over 2 years following hysterectomy and scar revision

[Jan Marie]

In Dec 98, I had a complete hysterectomy with the complication of a blood clot in the incision.  I have had pain since then.  In June 2000, I had a scar revision that has intensified the pains.  Everyday I have stinging, burning, and needle like pains in the area of my right underwear leg band, over my right hipbone, and on incision, and in right buttocks.  This can also involve my right waist and has recently been spreading along my waist to my spine.  Similar pains wrap around my hip and this area is very sensitive to things like the weight of the bedcovers, seat belt, and clothing.  It is very painful to sit or to try to sleep at night.
Some days, I have a very distinct area of soreness to the right on the incision.  This seems like a pinching like one of those black clips. The inside of my abdomen is sore like I wish I could rub first aid cream or put cold water on it.

My doctors here think this is some kind of nerve pain.  I have had physical therapy, MRIs, Cat scan, X-rays, and EMG but these tests are all 1-2 years old. I have taken several medicines, the only one over a long period was Neurontin.  I am now taking Klonopin and using TENS.  I tried Elavil before the scar revision and it did seem to help the stinging a little.  
I still have a great deal of pain and am depressed by it and it negatively impacts my whole life.

I have not seen a neurologist or a pain clinic, or had a nerve block.  

What should do next?  Thank you, Jan

[rosita50]

A related discussion, endoscopy was started.

[nitty]

I'm glad I found your post.  I tried to look for those who have similar problem that I have and you're the closest.  I had a cervical problem 2 months ago, after a cervical biopsy I sensed a burning pain in my vagina thru my cervix and then down to the back of my right thigh.  After having a surgery (cone biopsy), I thought that would also eliminate that pain problem that I have.  after the surgery for 7 days the pain was gone and now it completely back with more symtomps.  I manage myself by buying a donut pillows that I can sit more comfortably becuase of the hole won't press on the suspect area since I have to sit in front of the computer whole day.  Yes, it dose work, however, now the same pain move to my right and left hip and also buttox area and I could not sleep because of that pain.  I use heat pad to help eliminate the pain while I'm sleeping, and it helps a little bit.  I started to have tingling in fingers and toes and now my 2 legs.  It just like someone squeez my vein.  I feel like tissue on my lower back split out. It comes and goes like crazy often in the afternoon.  I saw my doctor yesterday, she said my pain has nothing to do with her surgery on me, she added that those symtomps sound like nerve problems.  I plan to go to see a specialist next week.

[CCF-Neuro-M.D.-JT]

From your description of the symptoms, it does sound like you have nerve pain.  You seem to have done all the right things so far: the neurontin is always a good start, but once you've reached 3-4gm/day, you've maxed out. At that point, you should consider adding something or changing it.  Elavil is also very good as it has a dual action against depression and pain, and works well on my patients with phantom limb pain. A physician can help titrate this med for you. Other meds that could help: capsaicin cream (which stings when you put it on and is supposed to "burn out" your pain receptors-painful in itself!) or depakote (a seizure med that has been shown to help with pain, bnut makes you sleepy). Stay away from narcotics as these usually do little to dull nerve pain and are addictive.  

The next step would be to see a neurologist who could help localize where the pain is coming from and which nerves seem to be involved.  They may also be able to help suggest and titrate meds for you.  And certainly a pain clinic would be of great benefit. Best of luck!