Health Organization for Pudendal Education

Hi I joined this site because I have what I believe are early signs of Pudendal Neuralgia. I'll try and be brief but I need some opinions. sorry though it may be looong but I think some of these things could be important info!

I have very bad health anxiety which causes psychosomatic symptoms. I had a phobia of throwing up and for 2 years I was so nauseous to the point of almost throwing up EVERY day. That was replaced when I read about PGAD and starting getting slight tingling (not an actual arousal feeling.. more like something crawling on my skin) which lasted about 2-5 seconds each but would come anywhere around my pelvic floor (and feet) many many times a day. After about 7-8 months of it I was fully convinced it was psychosomatic too and it went away instantly and has never came back! Now I look back I know for sure these were definitely psycho as well as having tons of tests and specialists to reassure me.

Anyway... 1 month of symptom free happiness. I start to get real genuine PGAD feelings (arousal, burning and throbbing) all in my urethra tube but sometimes going all the way down to my anus.. very rarely. This has been going on for 4 months now.. It starts before my period and once I'm off my period I take antibiotics (Drs assume it's a UTI) and all symptoms clear up in a week. This has happened for 3 months until this month. This month they said the UTI test came back negative and so didn't give me any antibiotics. Now it's been the longest I've gone with these symptoms and I'm starting to get new symptoms which are like pudendal neuralgia. One being a pebble feeling on the right side sorta next to my urethra tube which comes and goes. Another is a slight ache all in the pelvic floor which also comes and goes. Only thing that makes me question this is that I had these exact symptoms during a kidney infection which went away after a huge course of antibiotics.

So basically I'm wondering... do I have a UTI which is now getting worse? Or do I have pudendal neuralgia?

Extra info:
1. My symptoms are sometimes relieved when I stand but usually not always
2. About a year ago I had an OCD problem of constantly clenching and releasing my butt cheeks for about 2 weeks which left me with what the Dr said was a skin tag on my perineum BUT it bulges out whenever I have a bowel movement. He said it just fills with blood but I read it could be some kind of rectal prolapse? Besides the tingling which I really am 95% sure were psychosomatic, I never had any other symptoms until now.
3. Paracetamol doesn't help, 10mg beta blockers helped for one day but then had no effect since even on a higher dose and even got worse on one day, so maybe just a coincidence?
4. I'm taking antidepressants which sucks cos that can cause PGAD
5. I'm going through a super stressful and depressing time in my life which is when the symptoms started
6. I almost had a spontaneous orgasm twice (months apart) before this PGAD started but I put this down to straining too hard to pee during a UTI.
7. I have no pain anywhere

Sorry this is so long, I am so anxious and depressed about this. It's even caused me to cancel uni this year which I'm so sad about. I'm going the doctors on Thursday with all my symptoms and info I've learnt about PN. I want to hear it's all in my head so badly but I don't think it is? Or I hope it's just a UTI but it came up as negative even though antibiotics helped every time?

Thanks for reading!

Hello,

Welcome to the forum. When you go to the doctor tomorrow I think it would be a good idea to ask your doctor for a referral to a pelvic floor PT. If you can find one who is trained in treating pudendal neuralgia that would be great. They can assess your pelvic floor to see if you are holding any tension in your pelvic floor muscles and if you are, they can help you deal with that. Also, since you have some anxieties and feel that some of your issues are psychosomatic, maybe some counseling or therapy would help, or you can read Ezer's most recent posts on this form by doing a search in the upper right for the word "mindbody" and the author Ezer. He was able to get rid of his symptoms using the mindbody approach.

There are two explanations I can think of as to why the antibiotics might have helped even though your urine culture came back negative. It could have been either the placebo effect or it could have been that antibiotics have some anti-inflammatory properties. So if you had some inflammation the anti-b's might have helped that.

If you ever come off of the antidepressants just do so very slowly. I was taking lexapro to help dampen the symptoms of PGAD and yes, I was concerned about coming off of it once the PGAD was gone after having PNE surgery. I took an entire year to wean off by cutting back 1/8 pill per week so it wasn't too drastic on my system. So just be careful and wean off it slowly if you ever quit taking it.

Good luck sorting through all of this. I hope you will feel better soon.

Violet

Rbvdk --

I don't have much advice to offer, unfortunately, but I just wanted to let you know that you're not alone in your feelings of anxiety and depression. I, too, had to cancel uni this fall, which sucks because I was really looking forward to it. : [ I suffer from similar PN symptoms as you do (they've been going on for 2 months for me), and even have the past history of supposed "pseudo pgad" episodes, and OCD. If you ever need someone to talk to, feel free to message me! <3

Hey thank you both for replying My Doctor said I shouldn't have PN because nothing could have caused it, after that my symptoms went away thankfully haha. I still get the PGAD feelings for a few seconds though and it still scares me a lot. Plus I'm getting stinging still I'm not sure if that's because of sweat? (Ew but it's been so hot here) or maybe because I only got it since someone suggested vulvodynia a few months ago, I started getting stinging instantly when they said that and it still comes every now and then, my brain is weird.

Sorry to hear about your uni by the way. id love to talk tbh, it's nice talking to people who understand or are going through the same. Wish I could help you too but hopefully yours is psychosomatic too?

Thank you both <3

Rbvdk, if you truly believe your problems are psychosomatic, you may benefit from looking at the TMS wiki forum. Hoping you will find a way to become well.

Hey Susanjane thanks! I googled TMS but couldn't find anything, what does it stand for? Or do you have a link? Sorry! And thank you I hope you do too.

Hi Rbvdk, these days TMS stands for The Mindbody Syndrome. Here are a couple of links: http://www.tmswiki.org/ppd/An_Introduct ... rome_(TMS) http://www.tmswiki.org/forum/forums/gen ... ubforum.2/

There’s a lot to take on board but I hope you might find something which helps. There are also quite a few posts on this forum (including mine) from those who have had success with the Mindbody concept. Good luck!