Urethra Nerve Pain Driving Me Nuts

[VCNJ84 ICN Member Find all posts View Profile Close VCNJ84]

I can deal with most symptoms of IC, but back when I first got very sick a few years ago, I had this horrific nerve pain. At the time I had so many undiagnosed problems that I was not totally sure where it was coming from: urethra, vulva, perineum etc. it was all meshing together.

Now that I know more of what is going on down there and have been on many meds, I know it is my urethra.

When this shooting pain happens, my life is pure hell. I have to limp to walk. It was gone for a long time but now is back.

I know I have to change my life b/c of IC. I will pee all day if I have to, but to be limping at 27 just makes me want to cry.

The pain hurts so bad, only Vicodin will help it. No lidocaine or OTC pain med will make a dent. I only have Vicodin right now left over from a surgery, I don't have an ongoing prescription.

I made an appointment with my URO Wednesday to discuss getting regular Vicodin for when this happens or maybe seeing if a bladder installation would help (I have never had one). I am nervous to ask b/c I feel like old doctors who didn't diagnose me thought I was a drug seeker, but I know I have to. I deserve to be able to walk without being in 10 pain.

I was also wondering if anyone feels that there would be any benefit to having an MRI??

When I was originally struggling with bladder and vaginal pain, a friend of mine who is a doctor (but only licensed to practice in another state and is in another sector of medicine so he couldn't help me) thought it could be to my benefit.

I have read stories of other people who have had things come back in an MRI that helped to put together pieces to the puzzle of their nerve pain below the belt. I am nervous to ask, again b/c I don't want to seem, crazy but I think i am going to.

Thanks for listening to my rant

[mizmak35 ICN Member Find all posts View Profile Close mizmak35]

urethra pain

I am in treatment with Uro for Instills, seeing a P.T., getting accupuncture and the urethral pain is sometimes so bad I can't walk or sit! Today I had another epidural L3/4. I know its not a flare from food because I have purposely withheld eating in the A.M. and as soon as I start walking around..bam...it hits. This is a depressing disease when you are doing everything recommended and still in pain. Trying to brighten up for Mother's Day!

[Becky Jane ICN Member Find all posts View Profile Close Becky Jane]

Ive heard about vaginal valium but not exactly sure what it does. Im wondering if that would help or some type of nerve block or trigger point injections in that area

[endogirl2 ICN Member Find all posts View Profile Close endogirl2]

My personal experience with vaginal valium is it didn't do a darn thing for me. I know alot of people swear by it but it didn't help me at all. Maybe for IC it works better. I am going for pelvic physical therapy for some endometriosis issues, I do not have IC or urgency/frequency - actually have the opposite during my period where it's awful to pee, can barely get it out.

[VCNJ84 ICN Member Find all posts View Profile Close VCNJ84]

I have the vaginal valium. It helps a lot with pelvic floor spasms, but it is not a solution for the urethral nerve pain.