external urethral pain?

[scarlette]

I have had severe pain for many years around my urethra on the outside. I had been seeing gyns for this, and they kept saying vestibulitis - although this is the wrong place for that pain diagnosis. After seeing a urologist last fall and being diagnosed with IC, I have been told this pain probably is the IC! Is this a common symptom?

If it is, how do you deal with it? Topical lidocaine does not help very much at all. Is the pain referred from our bladders or local nerve pain, or a result of pelvic floor muscle spasms? I am told I have thsee spasms, but I am not so sure. I have tried the biofeedback and on my most painful days, it registers high electrical activity in the pelvic floor, but does not on less painful (but still horrible) days. I wonder if the spasms which have shown a couple times to be bad are actually the result of putting the tampon-type probe against a very painful area (pressing up against my urethra). It seems that could cause the muscles to spasm against the added irriation to my pain.

Also, for anyone who has this symptom, do you occassionally get inflammation at that area? I'm excited that I may not have vestibulitis at all, but just have been misdiagnosed for many years. However, I don't know that the new problem is any more fixable. Thanks - Scarlette

[poetgirl]

Hi Scarlette,

It's hard to say whether or not your vestibulitis diagnosis is incorrect or not. Sometimes the symptoms of IC and vulvodynia resemble each other, since the nerve endings are so close and the tissue structure is so similar. You can have inflammation or nerve pain that extends to the urethral area even if you have vestibulitis (it may be more correct to say vulvodynia, rather than just vestibulitis, since it encompasses the entire vulvar region and not just the vestibule.)

I have had some of the same problems you describe (I have IC and vestibulitis.) In a few instances, the external urethral pain I experienced was a result of inflammation of the glands on either side of the urethral opening. However, I have had generalized pain in that area that were more a result of the pelvic floor or bladder muscles spasming.

I would push back on your gynecologist/urologist to determine what exactly you have because treatment methods for vestibulitis and IC do differ. In either case, I hope you get some relief!

grouphug

[MarthaF]

You might want to read this article by Jill about the paraurethral glands to see if it fits.

http://www.ic-network.com/newsroom/796.html

We have asked Jill to interview Dr. Gittes since this seems to be a common problem.

Martha F