Health Organization for Pudendal Education

hello
my name is lisa and i am new to this forum although far from new to pelvic pain
I first met Prof VanCaille 11 years ago when after exhausting many many Drs gynaes and urologists, and being told too often to want to remember that the pain i described was not possible, I met the man i will forever call my angel.
I had previously begged Drs to commit me because if i was imagining this pain, I was severely mentally ill. I had taken a carving knife to my genitals and attempted removing my vulva with, luckly, no luck.
To me, my symptoms were clear, I have constant and severe urethral spasm. I had previously sufferred with cystitis, so i recognised the pain, Drs had given me so many antibiotics even though there was no infection present, that I became allergic to them and my lungs collapsed.
When i finally met Prof, he did not look at me as though i had no idea what i was talking about but said we should do a urodynamic test and see what was going on...the results clearly showed constant and severe urethral spasm, so costant and severe by this stage, that the muscle could no longer relax to void and i could not empty my bladder without using a catheter.
Its been many years since I first tried having botox unsuccessfully and learnt to live with years of cognitive therapy and a body filled with painkillers and finally I have had enough and made an appointment to see Prof with the intent of having everything removed, and i stumbled across a lot of new research which makes me wonder whether there is something else that can be done and i dont need to lose my bladder and urethra. And i found this forum...
so hello!!!

Hello, welcome and hope Prof can help you!
Janet

Hi Lisalau,

I had the bladder disease interstitial cystitis for years before I started having pudendal pain. Please research bladder / urethra removal very carefully. I am not very well informed on the subject, but my understanding is that some women with this condition were having their bladders removed and that for most it did not stop their pain. That is because the bladder was not the source of their pain: The bladder was malfunctioning due to faulty nerve signals, and the faulty nerve signals were due to abnormalities and muscle spasms elsewhere in the pelvis.
Have you tried Physical Therapy (might be called Physiotherapy in AU I think) with a pelvic floor specialist? If not I would recomment this just to see if you have pelvic floor dysfunction (tight, spastic muscles throughout the entire pelvic floor), or any other pelvic abnormalities that need to be worked on.
I am also wondering why the doctor wants to address the urethra itself rather than exploring the nerves that enervate the urethra (or maybe he already did that?). It could be entrapped at some level which could be repaired directly. I had tarlov cysts on the spinal nerve roots in my sacrum, and while I did not have urethral spasm it did cause me to be unable to empty my bladder fully. If it had been neglected as long as you have been neglected, I assume it might have progressed to the point where I could not urinate. My point is, the source of the trouble was far away from the bladder and urethra.
I would encourage you to do lots of your own research as well as to ask your doctor, can you demonstrate to me what is the root cause of my condition? Also ask him what he thinks bladder / urethra removal will accomplish and why / other similar case histories. Get lots of testing and when it comes to treatments, start with the most conservative and leave the bladder / urethra removal as the last resort. I understand you just want the pain gone, but I'm afraid you could go through a major surgery / permanent body alteration and discover that you still have pain. The internet is a great resource; for sure try to put a lot of keywords into search engines to see if you can find anybody with similar symptoms and learn from their successes and failures. The Interstitial Cystitis Network has a lot more information on bladder removal than does this site, so you might want to check it out even though you don't have interstitial cystitis. I don't like the forum to be honest but the website does have lots of info.

Lisa, from everything I know and have heard about Dr. Vancaillie, you will be in good hands with him. Wishing you luck with your appointment and I hope he has some answers for you. I agree with Hermajesty that if it's the nerves that are the source of the problem, removing the organs is not going to help and may make the problem worse. The pudendal nerve innervates the urethral sphincter so it's possible it is the source of your problems although there are other diagnoses that should be ruled out too.

Best,

Violet