Health Organization for Pudendal Education

Jeanie,

Was your surgery successful. I had right TG surgery with Dr. Ansell In November of 2009.

Thanks,
Debbie

Debbie,

So far I have not seen much improvement, how about you? More than mine, I hope. I know some people take a long time, so I like to think "not yet" but I have to admit my streak of optimism is getting narrower.

Hugs,
Jeanie

Gel cushion is the only thing that works for me, so far.

Ray,

Can you tell me where you get the gel cushion?

Jeanie,

Unfortunately my surgery from Dr. Ansell made things worse. It will be two years in November. I also suffer from vulvodynia. I hope this is not the case for you. Have you tried Physical therapy?

Debbie

Hi Debbie,

So sorry to hear this has happened to you. I have not tried any special PT for PN postop, as although I have a pelvic floor PT at my local hospital and did do PT before surgery, she is not very "PN aware", so I just do my own pool therapy, gentle stretching and swimming with flutter kicks. I have also tried massage therapy and cranial sacral therapy, which was pleasant but did not really do anything much to help. Trying fentanyl patches right now at the 25mcg/hr dose, have been on these for just over a week, no results yet. I am trying to decide whether I want to increase the dose, possibly, at the cost of becoming dependent, or of getting of of them before it is too late.

I tried to send you a PM but don't think you received it. If you would like to correspond this way, please try sending one to me.

Debbie,
Google roho cushion. Contour select is the popular choice. Sometimes you can get insurance to pay with a prescription from your doctor like Violet did.

Thanks for the information Don.

Debbie

Jeanie,

I could not get the PM to work either. When I was staying with family in Michigan I went to the pain clinic because I was on Lortab 10 and it wasn't helping. They put me on the same patch that you are on. I tried it for two weeks and then I Had to go to my pain mgmt in Alabama. They immediately took me off the patch and tried me on oxycontin. This didn't help either. I am on a new drug called Nucynta. They started me on 50 mg and it helped a little. I went back after a week and they bumped it up to 75mg and I do get some relief from it. They said 75mg is when it usually works but didn't want me to start out at 75mg. There is no generic. But my dr had a card to use from the drug manufacturer for the first three times for the cost of $25. Then I will have to pay $88 after that. Maybe you can ask your doctor about it. The only side effect is that it is hard on your stomach for an hour after taking it. Hope this helps.

Debbie

Hi debbie

Just a quick note about Nucynta - (this is tapentadol and has other trade names in other countries - it is Palexia here in the UK) - if all you are taking is 75mg daily then this is a very low dose indeed.

The maximum dose is 700mg on the first day that you take it, after that no more than 600mg a day, so that would be 8 x 75mg. There is a dosing schedule here that you may find useful to discuss with your doctors.