Health Organization for Pudendal Education

After 8 years and 12 doctors I was diagnosed by Dr. Richard Marvel with PN. Tried many medications (gabapentin, amitriptyline, lyrica, valium, elmiron, bellladona/morphine vaginal suppositories), pelvic floor PT 3 times, had 5 PN nerve blocks. I limit sitting (and only on a cushion), painful sex, constant burning with urination. Had a hydrodistention and many weeks of bladder installations. Had a neuromodulator stimulator placed in September, 2015. Stimulator has helped some (I can wear pants that are very soft and stretchy). I also have re-current UTI's (6 this year, 8 last year) which aggravate my pelvic pain (all confirmed by a urinalysis with culture). The pelvic pain all started with the UTI's.

A uro-gyn had me follow an IC diet previously, took elmiron for about a year - symptoms did not improve. Wasn't any worse after I stopped elmiron & quit the IC diet. Dr. Marvel would like me to try the IC diet again (its so restrictive I don't want to!), put me on an allergy medication and aloe vera supplements. I just don't think I have IC since I have no flare ups after eating/drinking something not allowed.

Current daily meds - 50 mg amitriptyline, 10 mg valium (orally), Hydroxyzine Hydrochloride (allergy med for bladder) and 6 aloe vera pills daily.

My questions are - should I try the IC diet again, and should I see another doctor?

Welcome to the forum. It does not seem to me that your symptoms are indicative of IC. In addition, when you tried the IC diet and medication, you did not improve. Where is your pain located? Have you seen a urologist, especially because of the frequent UTIs? When you write you saw a pelvic floor physical therapist three times do you mean 3 sessions total or 3 different therapists?

Sincerely,

Stephanies

I was on the IC diet for almost a year, taking elmiron & still had pelvic pain and burning with urination. When I went off the IC diet & stopped the elmiron, I didn't feel any worse. Started drinking coffee again and symptoms stayed the same.

I have clitoral/perineal/labia pain, and the constant feel of a UTI (even when a urinalysis is clear). No rectal pain (only if I get constipated). I've seen 4 urologists, 1 uro-gyn, 6 gyns and an interventional radiologist. Sitting and sex give me the most pain.

I've been through three 12 weeks of PT with a pelvic floor specialist, which never gave me relief (pain calmed down some). My PT says I'm not typical of an IC patient.

Thanks so much for responding - I feel lost, helpless and am so discouraged.

Cindy

Hi Cindy,

It's always a difficult decision whether to see another doctor but I think if you don't feel like you are receiving adequate treatment it never hurts to get a second opinion. Also, I was wondering if the PT you went to specializes in pudendal neuralgia. Some PT's are better than others for PN and just because someone is a pelvic floor specialist doesn't mean they know how to properly treat for PN so that is something to consider.

Violet

Thank you, I'll ask Dr. Marvel for a PT that specializes in PN.