Health Organization for Pudendal Education

Hi Everyone,

My name is Natasha and I have interstitial cystitis, a condition that makes me feel like I have to pee all the time. I have had so many treatments for this and none have worked (botox, interstim, pain killers, bladder spasm medications, instillations (helps a little)... and am actually looking at having my bladder removed. My bladder is small holds 250 cc and I have run out of treatment options. I am hesitant; however, because I wonder if part of my problem is my pudendal nerve. For example, I constantly feel like I have to pee. Ever since I can remember being alive my clitoris has been so sensitive. I know this is too much information but it is like the almost constant need to have an orgasm especially when I lie down. It is awful. Also, I have have this tingeling sensation near my tailbone but deep inside me by my anus. I do not have any burning pain anywhere.

Basically, I am scared to remove my bladder only to have continued frequency urgency because of PNE. I am schedule for a pudendal nerve block Friday. I can't have an MRI because of the intersitm I still have in my lower back. I had a ct scan without contrast and it was normal.

Any advice is appreciated.

Hello Natty,

Many women on this forum will understand exactly what you are feeling. The pudendal nerve innervates the bladder sphincter and it is very common to have a feeling of needing to pee frequently or even constantly with pudendal neuralgia. Since the pudendal nerve also innervates the clitoris, clitoral hypersensitivity is another common symptom of PN. There is a very long thread about persistent genital arousal syndrome (pgad) here that you might find helpful.

I did not have any burning pain either in the first stages of PNE. Eventually it progressed to severe pain but it doesn't always. Just to give you some hope, PNE surgery has taken away about 99% of the constant feeling to pee and pgad that I experienced before surgery.

Is your nerve block next Friday or was it yesterday? I hope it goes well for you. My nerve blocks never took away all of the discomfort and usually caused a pain flare afterward so don't be too discouraged if you don't see a huge improvement afterward.

Best,

Violet