Before I see a pain specialist...

[bishop]

I have no actual diagnosis of PN or PNE but I haven't been able to sit without a burning, stinging sensation near my right "sit bone" for over a year now, following bladder surgery. I have an appointment to see Dr. Hibner this August. Meanwhile, before I got the appt w/ Dr. H., I made an appt to see a local pain specialist at the University of Washington in mid-April. I have no idea what he is going to recommend but knowing that even specialists can be very unfamiliar with pudendal nerve issues, are there any treatment suggestions he makes that I should reject?!

I've already had a "guinea pig" experience with my urologist injecting lidocaine near the pudendal nerve area. It did nothing for me but I'm concerned about trying things that might actually make my situation worse. I want to have a fairly open mind when I see the pain specialist and I HOPE he can help me but if the pain specialist seems unfamiliar with PN or PNE, should I just put off treatments until I hear what Dr. Hibner suggests?

Thanks for any input!

Kathy

[helenlegs 11]

Obviously tell the pain managment person that you suspect PN, therefore nerve pain and see if they agree with that diagnosis. I haven't got a clue what they will suggest for you BUT it might be good for Dr Hibner to see if any of their suggested conservtive treatments have worked for you at all or indeed if they have not worked for you also.
The only other thing I would say is give yourself time before making up your mind whether a treatment has had any good effect. If you are anything like me you hold on to such hope that something will work that the placebo effect from some treaments cuts in initially.
Hope things work out for you,
Take care,
Helen

[bishop]

Thanks for your reply, Helen. I guess I'm a little nervous because I'm not sure what to decide if the pain specialist mentions trying nerve blocks. When I posted on this forum back in November 2010 that my urologist was trying lidocaine, some people responded that it might not be such a good idea to have a doctor just "trying things" without me having a specific diagnosis. One person said it could even do more harm than good. I've waited four months to see this pain specialist and I've never seen a pain specialist before. I'm just concerned that if he isn't familiar with PN or PNE that he might want to experiment with some treatments--and I just don't want to get worse! Thanks for listening

Kathy

[GraceUnderFire]

Sometimes they recommend pelvic floor specialist PTs who rely heavily on kegels which are a cardinal sin when it comes to PN. Stay away from those!