???

[icbop]

Hello,

I have had I for 5 years now. No frequency or urgency, just what I think is urethral pain (and now a little pain like period cramps).

The reason i suspected PNE was bc the whole thing is so much worse after sitting. I get relief standing up, but not complete relief. Often sleep is problematic bc of the burning.

I actually called Dr. Ken Renney, and he said that it did not sound like PNE since the pain was so far up. But then on the website listed on the sticky, I see urethral pain as a possible symptom.

Then I started to really look at where my pain is. It is exactly between my urethra and the clitoris. It is sensitive to the touch. After I urinate in the AM, I start the burning. Before that, I am generally fine (but how long can one wait, really).

Does this sound like I should have it checked out?

Thanks to those of you who've dealt with / are dealing with this.

[Kara29]

I would actually try to call Dr. Mark Conway. He's really good at the female anatomy because he is an OBGYN as well as PNE Specialist. I got great feedback from him about this very topic of urethral issues as well as clitoral issues and he's easy to talk to about these issues.

Kara

[icbop]

Thanks so much for the info!!!


I would actually try to call Dr. Mark Conway. He's really good at the female anatomy because he is an OBGYN as well as PNE Specialist. I got great feedback from him about this very topic of urethral issues as well as clitoral issues and he's easy to talk to about these issues.

Kara

[icbop]

Thanks! I like to have various places to look. What about Dr. Weiss in San Francisco? I've see many posts about him on the boards over the years, but I did not suspect PNE at the time. I'll look again.

[cc123]

I have been seeing Dr. Weiss since November of 08. I love that man. He is brilliant and very kind. When I got to him I had an array of symptoms of which I have listed under the topic 'leg pain'. I could barely walk. In fact, last Haloween I couldn't take my kids trick-or-treating that is how bad it had gotten. I went to him on November 4 and he touched on every muscle and nerve that hurt and diagnosed me. We started with nerve blocks which flared me something horrible for about a week and have done internal and external pt since. The first 3 months of therapy were very difficult and I had more pain than before which I didn't think possible but he encouraged me to stick with it, that I would get better. I did and I have progressively gotten better since then. I still have little flare-ups but nothing that prevents me from doing anything that I want to do. I would say that I am about 85% better.
Anyways, I highly recommend Dr. Weiss. He is at the top of my hero list.

I hope this helps...

[icbop]

Thanks so much!

I hope he can help me. I have been told my muscles are low-tone, which the intake person there found hard to believe.

I will be flying out to him in late November and staying for 2 days.

I don;t know if it'll help, but I'll try anything at this point!




I have been seeing Dr. Weiss since November of 08. I love that man. He is brilliant and very kind. When I got to him I had an array of symptoms of which I have listed under the topic 'leg pain'. I could barely walk. In fact, last Haloween I couldn't take my kids trick-or-treating that is how bad it had gotten. I went to him on November 4 and he touched on every muscle and nerve that hurt and diagnosed me. We started with nerve blocks which flared me something horrible for about a week and have done internal and external pt since. The first 3 months of therapy were very difficult and I had more pain than before which I didn't think possible but he encouraged me to stick with it, that I would get better. I did and I have progressively gotten better since then. I still have little flare-ups but nothing that prevents me from doing anything that I want to do. I would say that I am about 85% better.
Anyways, I highly recommend Dr. Weiss. He is at the top of my hero list.

I hope this helps...

[duchesstiger]

Well, I think the Dr. Weiss is worth a shot. The PN community opinion of him varies but he does refer to some of the best PNE Doctors if he finds that he cant help you so I think he is definitely worth a shot and he *has* helped people. One of the best things about him is that he is pro physical therapy which is something that every PN patient needs to take a good shot at before going down the path of surgery which is a very uncertain path.

Good luck and I'm sure you will be finding yourself on the road to healing soon!!

[Kara29]

I just had the operation with Dr. Conway in May and I have to report some good things! I can sit now without any painful consequences. That is a major thing and it was done in May. I am happy with the results thus far from his operation. It takes about two years to fully get the benefits of this operation. Even if I don't get any more, I will take sitting and I'm happy so far!

I would like to encourage the positive talk regarding Doctors here. Some of us are planning on seeing Dr. C for our own reasons and some of us spent a lot of time and money to get there. After 2 years, if no results in the good direction then someone may choose to move on in another direction.

For those of you who did see Dr. C and are going to see him, please don't let one person (who has not even gone to him) sway you. It's your choice for your own reasons.

Kara

[Grammy]

Kara it sounds like you are getting better and it has certainly been a long haul for you. If you can call me sometime I would love to talk to you as the last time that we talked you sounded discouraged. You can contact me through this site and we can set up a time to talk. Grammy

[Kara29]

Grammy,

I am quite sick this week with a virus, fever, small bowel obstruction and PNE Pain over a 10. When I get sick that part of my body goes nuts as well.

Kara