Nerve Lysis/Ablation ??

[bailey12]

I'm not sure exactly where to post this, it's r/t to pain so I'm guessing this is the place. My ob/gyn has been giving me steroid/lido injections into my lower inside vaginal area for about 6 months to help with severe pain caused by scar tissue from multiple surgeries. The injections help for a short period of time, but then the pain comes right back. I've tried every treatment he has to offer, meds, pfd p.t., reconstructive scar surgery, vaginal dilations... nothing has helped and it's been more than 2 yrs. The pain is so bad that it makes having any type of relationship with my husband virtually impossible and torture.

Gratefully for the moment, I pretty much have my IC at a tolerable level with the help of meds and pfd therapy, but the vaginal pain is unbearable. It literally feels like I'm being ripped apart and then having bleach poured on me. My husband is such a sweetheart about it and never complains or pushes the issue, but I'd really like that part of our life back. I'd also like to be able to wear jeans and to sit for more than a few minutes without torture.

My Dr. has said he can do a permanent procedure he called lysis/ablation where he injects something into that area only that will kill the nerves so I will have no feeling there. The areas are about the first 1 inch of the opening of the vagina at the top where the urethra is and right at the bottom where they cut for an episiotomy, only those 2 areas and it would be more surface not done from a spinal. He said it's better to have no feeling at all than to severe much pain that radiates to my whole pelvic region. I totally agree with that, but am worried about the risks involved too; like if he misses the exact area and it kills the nerves going to the urethra or rectal spincter and then I'll lose control.

Has anyone ever heard of or had something like this done? It's not something I've seen posted before.

[Kara29]

I had this done but it was not sucessful. It was done by the wrong team of doctors. They are going to attempt at some point not to do an ablation again but to do what is called a Denervation. They will be running a series of 6 nerve blocks to determine the correct nerve. It's a test that needs to be repeated several times before they do something permanent. I would call your doctor and discuss the fears that you have and how long this treatment is supposed to work and what do they do if it doesn't work out. It would be a great thing if you could find a chronic pelvic pain specialist because there could be other pelvic issues happening that are very rarely talked about. I am hoping that my next set of doctors is better than the one that did the ablation on me. I hope that you can learn to communicate your thoughts and fears to your doctor and have him explain exactly what he will be doing for you.

Good Luck to you!

Kara

[Kara29]

Radio Frequency Nerve Ablation


"Radio Frequency Nerve Ablation is a procedure used to temporarily deactivate minor nerves that supply the facet joints in the spine. These nerves are often the source of back pain as well as intractable pelvic pain, including the urethral area. and can be temporarily shut down using radiofrequency energy to heat the surrounding tissue. Under fluoroscopic (X-ray) guidance, the affected nerve is accessed and a special probe is inserted, allowing the delivery of radiofrequency energy to the targeted area. Results can last from months to years."

Kara

[NicoleB]

I have similar pain as the woman who started this thread.

is ablation done like a surgery under general anasthesia? is there the possibility of damaging nerves and losing all sexual function?

i know cutting nerves seems like a drastic procedure, but i dont think a cocktail of pills the rest of your life is all that desireable either!

[Kara29]

It is done under a twilight anesthetic such as Versed and Fentanyl. As with any surgery or procedure, complications can happen. Some people can't take pills like myself so I have to go the surgery route sometimes. I did not lose sexual function from my Ablation but anything is possible. My advice would be to talk extensively with the Surgeon who is going to do this type of therapy about your concerns. An ablation is not cutting the nerves. Cutting the nerves is called Denervation. Ablation just deactivates the nerves with heat or chemicals depending on the technique they use.

Kara

[lalarainbow]

Hi
My Gyn. suggested I have that done..but I really was concerned that he might not get the right nerves or I would end up worse.. I decided against it for now. I certainly know the tight jeans feeling.. On bad days I just wear loose pants or skirt or dress.
I have good and bad days and no idea what triggers this V stuff.. just like the ic.
I tried 4 different ointments and nothing really helps it when it is bad..I am trying St John's Wort which is suppose to be helpful for nerve pain. I have been feeling better but not sure if it is that or is it just that it is not acting up.
There are times it is so bad i just wish I could have some kind of needle to dull the pain..
Hope you can find something that helps..
~~Pam

[NicoleB]

i notice this procedure is under the "end stage" catagory. i'm in a decent amount of pain that makes me very very depressed, often thinking about suicide to be honest, but my IC is not quite end state. actually, my bladder is in ok shape. i'm just in a lot of discomfort, and i think my nerves are more affected than my bladder lining. My bladder actually looks fine...BUT I DONT FEEL FINE!!! i'm already on elavil and detrol, and i've been scared to try elmiron. i'm just so loopy tired and grumpy on the amount of meds i'm on now, and i'm not sure i can handle another. I really wish i could have some nerves just cut out. This discomfort is seriously ruining my mood and life. i'm pretty young, but i look ahead and think how i'll probably never have kids, because face it, i cant even take care of myself. i'm a wreck.
sorry for the rant, but do you think they'd do a procedure on somebody who has..i guess a "mild" form of IC? (keep in mind it doesnt feel mild). i'm beginning to think this is all i want at this point.

[marysxx]

I DON'T KNOW HOW MUCH MORE OF THIS I CN TAKE. IC/FIBRO/ETC.
THIS NERVE PAIN STARTS AT THE OUTSIDE OF MY LABIA AREA. THEN IT RADIATES DOWN MY INNER THIGH THEN BACK TO MY VAINAL AREA. IT BURNS AND IT GIVES ME THE URGE TO PEE CONSTINTLY. PLEASE IF ANYONE HAS THE SAME ISSUE AND YOU KNOW OF AN INJECTION THAT WORKS. PLEASE LET ME KNOW. SOMETIMES I JUST WANT TO SLEEP AND NEVER WAKE UP.:toilet:

[mpizze619]

My pain starts at the pubic area and radiates down toward my vagina, urethra, and upper thighs. Its getting to where I can't take it anymore. Its uncomfortable to sit, walk, lay down or anything. Just got back from my uro - he is sending me to a pain dr - which got me in tomorrow. Does anyone know what I should expect??? I've never been to one before so I have no idea what to expect.

[NicoleB]

i have similar nerve pain as you guys. Tricyclics helped, but i did not like the side effects. neurontin takes an edge off too, but with similar side effects, yuck. but i recommend you try these meds because you might tolerate them better. Right now, i'm taking Tramadol twice a day. this stuff has saved my life. its the only pain killer that actually works on nerve pain. (i used to be not able to sit at work, and it was causing major problems, but it has lessened significantly with this med) i'd say on a good day, it removes 70% of the pain.

i'd also try atarax because its good for dulling inflammation. i also tried phyiscal therepy because my muscles are tight and pinching my nerves. i've gone for about 2 months now and i honestly feel better, and it pretty much cured my stabbing back pain. she let me try the TENS unit at her office, and it gave me pretty good relief for about 4 days. now i'm going to take a home unit so i can hopefully lessen my meds.

seriously guys, i know how awful and stressful it can be. but these above treatments made a huge dent in my pain.