Health Organization for Pudendal Education

Good luck. If you can beat this with lifestyle changes that would be awesome.

Violet

Figured I'd drop in for an update.

As of now, I'm still not 100% better, but I don't feel like I'm getting worse. At present, my symptoms include:

- Feeling numbness and/or tightness in the left side, extending from outside of the anal region to between my left leg and penis. Sometimes this is localized in one area though, and is usually triggered after having a bowel movement.

- Still having some urgency, but I feel like I have some more control over it. I haven't had to wake up in the middle of the night to pee like I was doing a few months ago. I do sometimes wake up with a need to pee, but this has been manageable.

- Symptoms usually start in the morning and almost completely disappear by the time I go to bed.

- Sometimes I will have a feeling of tightness or light pain in the left side of the base of my penis, but this is less frequent than the other symptoms and hasn't been happening as much lately

Sounds like you are making progress in the right direction -- toward improving. That's great news and I hope it continues for you.

Violet

Just a minor update.

I went to see a new GP yesterday (I've been floating between GPs for a few years now, as they usually end up moving/retiring). I mentioned the symptoms I was experiencing to him, and he had no idea what I could even be experiencing. I mentioned possibly damaging my Pudendal/Perineal nerve. He didn't rule out that it could be trauma to that area, but basically said that there was nothing he could recommend and to just "learn to live with it" . He also mentioned seeing a neurologist about it if it persists, but quickly added that they electro-shock areas to test nerve functionality, and that it was a "medeival" method of testing, as if he was trying to scare me off of the idea.

This is after seeing a Urologist who said he'd never heard of a nerve problem causing my symptoms of frequent urination/tingling and numbness, and was dead set on the idea of it being prostatitis, even though all testing he had done proved otherwise.

I feel like I'm starting to see the state of the members in this community. Floating between doctors who either don't know what they're talking about, or are ignorant of this malady is incredibly frustrating.

I've also been to some providers who didn't have a clue. I'm sorry you are experiencing it and I understand how frustrating it is. Hope you can find the right person to help you soon.

Violet

Hi all,

It's been a while, but I wanted to post my current state since December.

Currently, the pain and numbness I had been feeling around my anus has disappeared. I attribute this to not straining during bowel movements and including more fiber heavy/healthy foods in my diet. I am feeling less pain/numbness after having a bowel movement.

In addition, I don't feel like I have to pee constantly as I did last year. When I do, the urges are a lot weaker than they once were.

However, I'm currently experiencing a worsening of one symptom:

- Toothache-like pain that occurs a few hours after masturbating or sex, localized between my left thigh and scrotum, traveling down to the underside of my scrotum

It's gotten to the point where if I sustain an erection for a few minutes, this can sometimes cause a flare up. I've gotten to the point where I've tried to stop masturbating or having sex, but it's kind of hard for me to do, since it's kind of a go to for when I feel depressed. I'm hoping, like with improving my bowel movements, that not masturbating will lead to an improvement, but I don't want to be in a situation where I can never do it again. Feeling kind of down as a result.

My symtpoms become worse after sex also with pretty much the exact same feeling a location. I think it's from over exerting the pelvic muscles during sex. Try with your partner on top or masturbating.

ComputerRepairGuy, I thouroghly re-read your story and feel much empathy for you.
This tooth-like pain after the ejaculation (sex or masturbation) was also the most prominent initial symptome in my case. pain never appeared immediately after ejaculation, but 24 hours or later...Exactly the same spot - between thigh and scrotum, somewhere "behind" the shaft of penis or so...mainly on right side...as there was kind of painful knot or something...
Difficult to say whether this is classical pudendal neuralgia or general pelvic myoneuropathy. But post-ejaculatory pain is a hallmark of classical CPPS, based upon the neuro-muscular assualt of the pelvic floor (without classical PNE), kind of repetitive stress mini-injury...I am in similar situation, each (even the most gentle) ejaculation will trigger several days of flare-up...but the classic spots of entrapment (Alcock, dorsal canal) were not painful at palpation at all (no Tinel sign)...

The idea of it being a kind of repetitive stress injury makes sense. I masturbate a lot, basically have been since I first found out how to do it! Never thought you could actually injure yourself doing it though.

I might just try to abstain from doing it for a month or so to see if there is any change.

Also, what is CPPS?

ComputerRepairGuy wrote:Also, what is CPPS?

Chronic pelvic pain syndrome.