Looking for Help

[Violet M]

Dear Jami,

Oregon truly is a beautiful state. We just came from vacation there and I can see why you moved there! I'm sorry for all of the pain you've experienced since your move there and for the loss of your husband.

Surgery in the areas innervated by the pudendal nerve (including the anal sphincter) are one of the causes of pudendal neuropathy. Any doc who told you your surgery could not have damaged the nerve may not be familiar with this illness.

Everyone's given you great suggestions but I just wanted to add a couple of things. Often physical therapists who treat pudendal neuralgia are better able to map out the exact location of your pain than a physician who doesn't have the time to spend evaluating the pelvic floor and the exact sites of tenderness in the muscles and nerves. So I think it could be helpful if you were at least evaluated by a pelvic floor PT specialist who knows how to treat pudendal neuralgia. It was a PT who figured out my diagnosis when the docs could not.

If the PT determines that your pelvic floor muscles are in spasm then a muscle relaxer like valium may help. I used clonazepam which is great for helping you get to sleep. Some people use valium suppositories because they don't have as many systemic side effects. For severe pain, belladonna and opium suppositories are good - although most docs won't prescribe them long-term.

It might not be possible for you to get to Hollis Potter in NYC for a 3T MRI but if you could I'm sure there are many patients on this forum who would highly recommend her. I don't know if there's anyone at OHSU who could get anywhere close to as good an MRI as Hollis Potter but it seems like it would be important to have that imaging test to see if there's any scar tissue impinging on your pudendal nerve after all of the surgeries you've had.

You have many options but unfortunately, it may take some time and travel. Keep your courage up and keep fighting.

Violet

[donstore]

Jami,
What Lois said.

Don