Hysterctomy with pn

[Lernica]

Katherine,

Unfortunately the hysterectomy did not help the PN or sacrum pain at all. I still can't sit or walk comfortably. So now my PN doc and I have moved on to begin to treat the PN. We had decided to hold off until after the hysterectomy, in case it was endometriosis pain after all.

Funnily enough, for about two weeks after the surgery the walking pain was better, but now it's the same as before. (For my posts on walking, see the "Trouble walking?" thread. Don't know how to paste it here yet!)

Does it look like to you that it was a vaginal hysterectomy instead of a laparoscopic supracervical hysterectomy? I know that my PN doctor talked to my gyno surgeon prior to the surgery and (hopefully) he would have told him about the risk of proceeding vaginally.

I haven't yet had my post-op meeting with the gyno but will do so on Friday and can ask him any questions.

Thanks again,

Lernica

[KMC]

Ohhhhhh, I'm so sorry it didnt help with the PN. I have a noticeable improvement in lower back/sacral pain, significant improvement in walking and improvement in bladder function. I am just over 3 weeks out now. I hope these improvements continue. Although I can walk "better" I still cannot walk very far or very long without totally spasming up. I dont know how much of that is just lack of exercise but I know its frustrating as hell. I think, OH BOY! I can go shopping! Then I get a quarter way through and wind up having to lay down on the floor. I start out so good I am embarassed to use one of the motor carts and by the time the spasms hit I am too bad off to continue shopping, even with the cart, I just need to get to the truck so I can lay down and rest. I will go find your posts on walking and check them out.
As for your hyst...I cant say for sure as I sort of get lost in it...but it looks like they did everything abdominally/laproscopically until the very end. You evidently had extensive endometriosis including down into the vagina. They had taken care of everything else with the lap but after going down into the vagina through the cervix, they cut away the endo in there and then took that endo, the uterus and ovaries out through the vagina. It sounds like there was so much to do...Im sure this was a very long surgery. With you being a difficult intubation, knowing how long you were under already, knowing that you had already had numerous surgeries, having extensive endometriosis....I'm sure they felt the consequences of cutting all that up to take it out the lap incisions was much more risky (ie more time under anesthesia, risk of spreading endo etc) than the possiblility of irritating the PN. I think they made a good call personally. Its true, it would have been best to avoid taking anything out that way but the spreading the endo would have been far worse in my opinion. How are you proceeding with treating the PN? Katherine

[Lernica]

Thanks for your comments, Katherine. They are very helpful. For PN treatment I am taking Gabapentin, 900 mg./day, and will begin PT on Feb. 9. I see the pain doctor/neuro on February 14 to review meds. I think the G is making a difference but I am still soooo disabled. Your story about going shopping sounds so familiar. I have stopped even trying. I will of course start up again once I have the pain under control. I continue to be hopeful that I will not be this way forever. I have had many ups and down with pain and disability in the past few years so I consider my current valley to be temporary and am prepared for the wait to get better.

Thanks again for your assistance.

Lernica

[KMC]

Your welcome! I wish you all the best. I hope you find something to help you and that the PN is helped by PT. Although still disabled, I am so much better than I was before surgery. I have a long way to go but I can see the light so to speak. I hope that one day I will be able to go back to some work of some kind. I doubt I will ever return to nursing..I have been out of it for so long I would have to go back to school now, which, not knowing if I would be able to tolerate the shifts, I doubt I would be willing to do. There are many other types of work though. I was on 3200mg of Neurontin at one point so I know about how much it helps.
HUGS, Katherine

[KMC]

(Sorry, have had major issues getting on the forum) I'm so sorry you are having such problems after your hysterectomy! With my nerve entrapment meds did not help much at all, not enough to make the side effects worth it. The only thing that helped was surgery. I havent been able to do PT since my surgery (started and had to stop due to a flare and was about to resume but then had to have the hyst) so Im not sure if it will help now that the nerves arent "trapped". Mostly what helps me now is avoiding/limiting activities that irritate the nerves ie sitting, standing, walking, stairs, car rides etc. I hope that yours is only an irritation/inflammation that will respond to conservative treatment. Katherine

[MsRivers]

Hello MonaRaeHill,

I believe my PN pain was brought on by my robotic vaginal hysterectomy. My problems began with bladder retention however, that seems to be in control. I retain when I've been in a lot of pain. I guess I can count myself lucky in that matter. I was left with PN pain and have not been albe to work for sometime. Having a hysterectomy was the WORST decision of my life.