Health Organization for Pudendal Education

Mamacat, a company called Uroplasty does posterior tibial nerve stimulation for urinary incontinence with really good success rates. They are now in clinical trials to use it for fecal incontinence. You might want to look at their website and see if there is anything that might be of help.

mamacat42,

Also check out the Tarlov Cyst Disease Foundation website as the distribution of you symptoms sound like you might have symptomatic tarlov cysts. If you have already had an MRI of your pelvic and / or sacrum, sacral tarlov cysts would show up however many radiologists ignore them when writing the radiology report. To rule out tarlov cysts you would have to request that your films be reviewed again with any tarlov cysts noted instead of ignored. Pelvic pain like you describe, with bladder and / or bowel problems, would be typical of symptomatic tarlov cysts at S2. It can also be due to many other causes but that is an easy one to identify.

I have gotten to the point where not only can't I wear any underwear, I have to wear a loose dress. Forget jeans. I used to be able to wear a loose stretchy lycra black skirt, but no more. I cannot stand any pressure on my pelvis. I have to manipulate my seatbelt when I drive.

I actually cut a 1 inch slit in the front middle part of the underwear from the top. It helps to not make the underwear so tight with the elastic. I also most of the time wear loose fitting nylon or polyester or other kind of sports jogging pants in the winter and occasionally very loose baggy jeans in the winter, or loose fitting sports shorts in the summer. I try to stay away from belts as much as possible, especially during bad flares of pain or bladder/urinary problems.

The hardest part of having pudendal nerve problems for me is the restrictions on what type of clothing I can wear.
When out shopping it is so hard to see lots of jeans and trousers knowing that I cannot wear these clothes. We all make huge adaptations to allow for comfort.
Thankfully the latest fashions are fairly generous on comfort.

Like most of us, it seems, I find it impossible to wear jeans any more, or any other kind of trousers really (I am in the UK - here if we say pants it means underwear). Mostly I wear skirts, but as I can't wear tights either (do you call them panty hose in USA?) it is not so easy in the cold weather here in the winter, so I have taken to wearing long skirts with warm socks most of the time. Not a very glamorous look, but comfort means more to me than fashion these days, and it is possible to develop a kind of individual, unconventional look of your own.

I also feel more comfortable without underwear, so go without at home, and sometimes when I am out as well. I feel that you just have to go with what works best for you, ans stop worrying about what other people might think.