Health Organization for Pudendal Education

Hi.. I haven't been posting much but I've been off on on the site. First of all I would like to give a shout out to Violet. You are an amazing person with what you have been through and you are here to help so many people. I wish there were more people like you. I can tell you genially care and hoping someday we all can find our answers and cures. Thank you Violet!

I was acutually Dx with mild PN about 4 yes ago. I also have IC.. I have taken my meds..lyrica 150 a day, Celexa 20 mgs a day and Klonopin 1 mg at night. For the most part I have good days.. I own my own business and pretty much do shat I like within reason. I don't think I'm going to go bungee jumping or something stupid like that anytime soon... Lol..

Well here's what I confused on. I tried to go down on some of my meds. All this time I wax thinking I was getting better but in reality the meds just cover up the problem. It's still there! So I live in Georgia and I don't think there's a doc here that is fimiliar with PN..I hear people talk about MRI to find out exactly what is causing the nerve to be irritated. My question is do you have to go to one of these specialist to have a MRI or can your gyn or neuro doc give you one? I do t want to make the mistake of be thrown from doc to doc. That's no fun so at least I know what's going on with me which is half the battle. I still do have some questions that some of you may be able to help me with..just one at a time. Thanks for listening and again my hats off to Violet! Your great!

Tonya

Hey Tonya,

The reason I stay around is because 9 years ago when I thought my life was essentially over I found the PNE forum and from what I read there I was able to find the treatments I needed. So I understand how important it is for patients to network and share their experiences.

You might want to check with some of the Georgia PT's on our PT list to see if they know any docs in your state who treat PNE. Also, if you haven't tried PT you might want to give it a try (from someone trained to treat PN).

Some people have had 3T MRI's locally according to the Hollis Potter protocol but it depends on your local radiologist as to the quality of the report reading. They can find out from Dr. Potter what settings to use but they won't necessarily know how to read it well.

Hope this answers your question.

Best,

Violet

Hi Violet
Yes back4 yrs ago when this first started I did go to PT.. It did help. It took awhile but things did improve and I had a. Or al life so to speak.. I thought it was gone. Well I decided to try to wing myself off of some of my meds and now I find myself back in the same boat. I'm going back up on my meds but I guess my concern is the meds r just masking the problem. I guess now do I go on the journey to find out what is causing my PN or do I continue living on meds and wondering if there is something that can be done. I hear of people having surgery and that scares me to death. I did call my PT just waiting to hear back from her. It's just hard when there is no doctors in your state to help you. I'm going to see a new doctor in two weeks.. He knows about IC and treats it so hopefully he is fimiliar with PN.

I guess another question of mine is if I can go for that long living a normal life, doing the things I enjoy is this a flare up? I would assume that if I had a entrapment I wouldn't have gotten better right?

Thanks for any info you can give me.
Tonya

Tonya, it's hard to know for sure when you have an entrapment but if you got better once from PT it seems like that might be the route to go before considering surgery since surgery is typically considered a last resort option.

Violet

I talked to my PT today and she referred me to a doc here in ga that is very fimiliar with PN of course I can't get in till Sept. Until then I will be going back to physical therapy. I did notice something tonight, I took a loritab 500 and surprising it took my burning away in my urethral area which it never had before. I was really surprised because last time I went through this it didn't seem to help that much. I will keep u posted. Thank you for your help.
Tonya

Tonya,

That's great that you've found a local doc who might be able help.

I know the long wait seems like forever when you are in pain but I hope it's worth the wait and that this doc will be able to help you. I would be interested to hear how it goes for you.

Best,

Violet