Male Pudendal Nerve Entrapment Diary...

[Andy_Pablo]

There is definite improvement since surgery but its not enough to give even a quarter of my life back. Its exhausting, but it is what it is. How are you doing with yours?

[April]

Oh, I'm so sorry it wasn't that much. Are you able to do more things than you did before? Have you been able to reduce your medications at all?

I'm okay. I am having to ice all the time now, so I've developed panniculitis (and the only cure is to not ice). But, I just saw my pain doctor yesterday, and he's changing my tramadol to nucynta. We think I've developed a tolerance to the tramadol so changing it up should reduce the pain and, hence, the icing. I've also decided to try the stimulator. Right now I'm just trying to figure out which kind (DRG, on the spinal cord, or directly on the pudendal nerve). Have you considered that? When I get time, I'm going post a short summary of what I've learned about the three options from my pain doctor to see if anyone has any other info.

April

[Andy_Pablo]

I can do marginally more than I could before surgery. I dont regret having it though.

Tolerance to meds was something we discussed ln pain management course. Its a bit shit. I hope you get some relief from new meds. I have spokem to a doctor about a spinal stimulator, but we havent talked specifics. I would be interested to read your thoughts on the options. Speak soon & take care.

Andy

[sadie]

Andy_Pablo

I wrote this up and went to submit and i deleted it by accident but your pain is to strong to ignore, so I am retyping it again. I am so sorry for your struggle . I will post here as apposed to a PM in case someone else can benefit from this post. I read that Violet mentioned Amitriptyline and I know that 60mg a day helped me work 2 jobs from 2006 to 2010, until it caused dystonia, accelerated by other medications given to me for a knee replacement. I had been on amitriptyline a long time for Pn pain, and I was in my 50s so that increase the chances of dystonia . You are in your 30s I believe, so that is in your favor. If you can use it along with the gabapenin you are on, you may be able to reduce symptoms long enough to regain a positive out look on things to enable you to fight. As for the gabapentin ...if that is not working , you may want to look into switching it to Lyrica. The good news is I think you posted that your dr said it could take 2 years after PND surgery to heal, if in fact it was to happen. Research had shown it can take 5 plus years (so you have time ). It took 3-4 years after my second PND surgery to see an improvement in some of the more horrible PN symptoms . I am still on medication so they may be lurking under the meds but at least I can sleep now. I take 75 mg 3x a day of Lyrica , and 5 mg 4x a day of Lexapro. I am not cured but the meds have bought me some time and that is important. I know it is two steps forward one step back. There is another helpful crutch I use, it is over the counter Salonpas HOT GEL pain patches, the capsaicin and menthol in the patches help to negate pain signals. I could not live without them. I pray daily with a friend for a break through in treating this disorder and thank God for this site, and that fact that all of us suffering have found it. I hope you find a new PN specialist that will help you. Sadie

[Andy_Pablo]

Hi all. Apologies for my lack of use of this thread, & forum in general. Something was happening & I did what I told myself I wouldn't do which was expect any positive results. So, a while ago, I had a last chance saloon, hail mary, spinal implant tester implanted. It was not fun apart from when I was half arsedly awake & tripping balls on meds coming out of theatre & I had about 30 mins of being completely pain free until they started moving me about & it was heavenly bliss until that point.

A lot of people criticise the NHS, & I have had a run in once or twice myself & had to stand up for myself, but I couldn't have been better treated & respected by all of the doctors, nurses & all of the support staff than I was. Which was nice. They were magnificent. The op however, went in fine, I got about Ok without yanking it out etc.

Unfortunately, the results were not good. Think “using a colander as a condom” not good. Its no ones fault, it just didn't work. I now have a big fat elephant sitting away in the corner knitting very loudly & humming the worst song in the world on repeat because this failed there is nothin else they can do for me & at some point I am going to have to face the facts that this is my life now & tbh, I have no idea how my brain will react once the exhaustion dies down & I cant ignore it any longer...

[johnny123]

This is very useful.

[April]

Andy, I'm so sorry the implant didn't work. Where was the lead? There is always the option of putting the lead in a different location. Have the doctors talked to you about that?

April