My very first post on my pudendal story

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pudendalboy
Posts: 1
Joined: Mon Oct 22, 2012 6:21 pm

My very first post on my pudendal story

Post by pudendalboy »

Hi, everyone! :D

I was excessively straining while having a bowel movement that was particularly hard to pass in march of 2009. The next day, it started to feel like there was something wrong. As soon as I felt that I needed to go to the bathroom, I then realized that the sensation of needing to empty my bowels was reduced to 10% or less of the intensity that I normally felt. I waited for a few weeks to see if the numbness was just a temporary thing, but it stayed that way. I told my parents, but they didn't understand and somewhat refused to believe what I was telling them. We didn't go to the doctor, since I was too embarrassed and afraid to bug them about it. A month later, while peeing, I suddenly felt something painful in my perineal area. The pain was sharp and it was unbearable to sit down. The only relief I got was from lying down and standing up. Along with the pain, the sensation of wanting to pee was reduced to 10% or less than the normal intensity as well. I also started to notice that my genitals were becoming numb as well and the feeling of orgasm was beginning to diminish. The pain slowly vanished after a few weeks, but the numbness stayed and got worse. This was the first time something like this ever happened in my life. I googled my symptoms, but wasn't able to find anything substantial to no avail. So I decided to focus on other things first hoping that the numbness would eventually disappear and that my normal sensations would come back. But they haven't. Finally, early this year, after years of constantly checking if I was feeling even a little urge to pee or poo, I was able to find information on pudendal nerve disorders, which led me to this forum. I live in Asia and am currently asking different local physical therapists and phyiostherpists if they have any experience treating pudendal nerve disorders. Should I give pts or physios who are knowledgeable in pelvic floor disorders, but who are not pudendal specialists, a chance; or should I go for treatment in the US, Australia, etc. Instead? I can travel to the US freely, if that helps. Are there any forum members who have similar symptoms/experiences? Thanks for reading my first post! :)
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: My very first post on my pudendal story

Post by janetm2 »

Welcome and I thinksomeone will know best howtoguide you but certainly there is help in both Australia and the US. Sorryyou have the issues that brought you here but there is a wealth of informationon the FAQs on the home page and the other members who have been here for a long time helping out. Good luck
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
greeneyes
Posts: 45
Joined: Fri Sep 17, 2010 2:43 pm

Re: My very first post on my pudendal story

Post by greeneyes »

A physiotherapist who is knowledgeable in pelvic floor issues may be able to help you. If you can find someone like that locally I would start there. I would be clear about what your issues are. Some pelvic floor problems, such as incontinence, are treated by tightening the pelvic floor. You probably need the opposite. Many pudental nerve problems are treated by relaxing the pelvic floor. If you can't get the treatment you need at home you can consider traveling somewhere else. There is a list of physiotherapists on this site. Good luck with your search!

Greeneyes
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: My very first post on my pudendal story

Post by Violet M »

Hi Pudendalboy,

Welcome to the forum.

If money isn't an issue and you can travel freely, you may want to just go straight to the experts if you can't find someone locally who is knowledgeable. Otherwise, you might just be wasting your time.

Yes, there are other PN patients who have had symptoms similar to yours but there are also other diseases that can have the same symptoms. At the time your numbness started were you checked for cauda equina syndrome? It sounds like you did not get any medical treatment at the time which is a shame.

I hope you will find some answers here. Best,

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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