Health Organization for Pudendal Education

I haven't made any comments on here, since the site changed. I've had this condition for one and a half years and my pain is only when I sit. I was diagnosed with PN by Dr. Antolak about 4 months ago. I was very afraid to start taking the prescriptions, the neurontin and the nortriptylin and having the injections, because of everything I've read on here. But I decided to try these things and I have had no ill effects from any of them. So I'm glad I went ahead with these, despite all of the scary things that have happened to others. I haven't felt a mind fog and my brain turning to mush from the drugs, instead I've felt great. And I haven't experienced any flares from the injections. And as far as Dr. Antolak goes, I'm grateful that there is someone in MN who is willing to address this terrible condition. And I personally don't think he looks a 100 years old. I guess he's in his 70's and I doubt he NEEDS to be working. And I think he looks quite fit.

I don't know that the meds and the injections are going to help, but it's better than not trying anything. My pain level, I realize is nothing compared to the pain levels described on here by many, but personally I'm grateful to those doctors who have given ANY recognition to this disabling condition. My 3rd injection was last Friday, done at St. Paul Radiology, CT guided, in the alcock canal. It was the first one that has seemed to have hit the right spot. So we'll have to see. I do have an appt made with Dr. Hibner in May, in case I need to consider surgery or get a second opinion on my condition.

Vicki, I'm glad the meds are helping you. My experience with Dr. Antolak was also positive. I think with nerve blocks there is the risk of having a bad experience no matter who you go to because it is, after all, an invasive procedure and not without risk. Same with surgery. Honestly, I think I have heard good and bad stories in regards to most of the PN docs in the 6 years I've been on the forums. We forget that they are only human beings and they are doing their best to help us.

Hi Vicki,
I was wondering if the nortriptyline made you feel tired and foggy when you first started taking it. If so,did the side effects get better each day. My doctors also want me to get a block, but I have been avoiding it because of the possibility of a flare and getting worse. You are encouraging me to go ahead with it!

Take Care,
Patti

Hi Patty;
I'm not Vicky but I thought I'd tell you that Nortriptyline drove me nuts. I thought I was having a heart attach one day. I called the doc and said enough, no more. I do think some of the problem was the Dr. at that time, had me on so much of that and Gabapentin. Nerve blocks: I have had 6 by Dr. Quesada in NH. Five were great, the 6th backfired, (my term, not his). If I had to do it again, I would. I'm waiting to see if the ins. will approve a Botox shot. What I read sometimes scares me and then sometimes gets me excited. I look at it this way. Pain has become a norm for me, so if it goes bad, I up the drugs and cry for a few days, BUT if it works, I will have relief and maybe find out I could do without surgery and the proper PT will get me better after awhile.
Patty, there are no gurantees but I think it's up to the individual just how many chances they're willing to take. My old life, I would have said No to all, now I say Yes to almost everything Funny how we change.
My best to you.
Doreen

Hi Patti,
I'm sorry I haven't made any responses to your questions until now. I haven't been able to log on for awhile.
I felt kind of funny for a little while from starting the meds, but feel pretty much myself now. Do hate that I'm gaining weight though. And I really don't know how long the Dr. will have me taking them. I would like to not be taking anything, especially if it really isn't accomplishing anything. I am planning on getting a 4th injection on Dec.2, like the last one, that targeted the alcock canal more.

Take care,
Vicki