Well... What next?

travelisdangerous · Post by **travelisdangerous** » Tue Jul 28, 2015 2:24 am

I posted on here about 10 months ago when I first started having problems. Had only been at uni three weeks and after a sexual encounter (my penis hurt at the time, not sure why possibly a bad move?) I felt a constant urge to urinate.

This constant urge to urinate did stop, but was replaced by pain and discomfort when sitting. I also started leaking a small amount of urine constantly, but much more when sitting. I went to a lot of doctors and they covered most ground, my prostate is apparently fine and no std's.

I saw a urologist that said everything seems fine and gave me a diagnoses of chronic pelvic pain syndrome, but I kinda felt like that was a bit of a cop out, although it was nice to finally get a diagnosis. I remember I asked him if it could possibly be pudendal neuralgia and he pretty much said it's very rare and there's pretty much nothing you could do about it anyway (not helpful).

I then saw a neurologist privately who seemed like the first person to actually take me seriously. He agreed that my symptoms were likely to be neurological and gave me mri's to rule out more sinister conditions like ms. He then pretty much said he had no idea, however my symptoms do seem very similar to a few cyclists that he treated with pn. He then said he knew someone that could give me a pudendal nerve emg, however it was complex so do it if things don't improve.

Does this seem like the right thing to do? What exactly is a pudendal nerve emg? At the moment my symptoms are pain when sitting (incredibly annoying since my uni course is a computing course) leaking a small amount of urine constantly, that 'foreign object in rectum' feeling and pain on one side of penis occasionally after masturbating.

I remember once I fell over (from barely any height at all) and had a worsening in symptoms for ages. I feel like this again points to the nerve being irritated and me irritating it more.

At this moment in life I am fairly happy, even though I have a definitely decrease in quality of life. I kinda wanna keep it that way so any ideas of possible treatments or advice on coping would be brilliant! I'm only 19 so this does make me more than a bit worried about my future...

Thanks for reading!

ezer · Post by **ezer** » Tue Jul 28, 2015 4:33 am

I remember once I fell over (from barely any height at all) and had a worsening in symptoms for ages.

travelisdangerous, you probably have non-bacterial prostatitis. What you write is so typical. Go look at the diagnosis and consult another urologist. It is stress and fear that started your pain cycle. Sex does not give you PN. Why the fixation on PNE?

travelisdangerous · Post by **travelisdangerous** » Tue Jul 28, 2015 5:22 am

Been tested for prostatitis multiple times, told my prostate seems fine, also has prostatitis medication. And because all these symptoms came on after that sex and I had pain at the time it happened.

I've pretty much exhausted every option for me not to think it's pn

Violet M · Post by **Violet M** » Tue Jul 28, 2015 5:55 am

TIS, I didn't see in your post where you even mentioned PNE so I don't see you as fixated on it. I've never heard of anyone getting permanently hurt by a pudendal EMG although I suppose there is always a possible "first" but I think you can feel safe in going ahead with it. I'm not sure how your particular doctor performs the test. I had one with the tiny needles in the perineum and I didn't really even notice them but the electric shocks were a bit uncomfortable. You can read more about electrophysiological tests on our website on this page. http://www.pudendalhope.info/node/69

It is completely understandable that you are concerned and want to get this sorted out so you can move on with your life. Did your urologist say anything about whether your pelvic floor is tight?

Violet

travelisdangerous · Post by **travelisdangerous** » Tue Jul 28, 2015 6:23 am

Thanks for the reply!

No, the urologist seemed pretty bad to be honest, but he didn't seem to think it looked like there was anything wrong with me.

What does this emg actually do?

I'm also thinking of asking for some pain killers from my gp so I can sit through university, my pain is definitely not as severe as I've read in some stories here, but after prolonged periods it does get very grating

Any other advice on what to do?

ezer · Post by **ezer** » Tue Jul 28, 2015 6:46 am

travelsidangerous, not bacterial prostatitis. I mean non-bacterial prostatitis. We have been over it already in prior posts.

It is completely understandable that you are concerned and want to get this sorted out so you can move on with your life.

Doctors keep telling him there is nothing wrong. Urologists, neurologists, GPs. Maybe those "non-PN aware" doctors are right after all.

I didn't see in your post where you even mentioned PNE

Violet, travelisdangerous has been obsessing over PN here:
http://www.pudendalhope.info/forum/view ... 195#p46195

and here:
http://www.pudendalhope.info/forum/view ... 309#p46309

I am almost convinced I have PN

travelisdangerous · Post by **travelisdangerous** » Tue Jul 28, 2015 7:13 am

No doctors have told me there is 'nothing wrong' they tell me there is nothing wrong from the tests they have done. The urologist tested my prostate and said there was nothing wrong with that. I was tested for STDs, nothing wrong. I was given an MRI of head and spine, nothing wrong. None of these are indicators that I don't have pudendal problems.

In fact my neurologist at the moment has some experience and actually thinks this may be the problem, hence why he offered the emg. And my gp thinks the problem is neurological, hence why he told me to see a neurologist. I have been through every stage I should have and due to process of elimination I am pursuing pudendal neuralgia, because if I didn't I would be lying down at home in front of my TV feeling sorry for myself with absolutely no hope of getting better.

travelisdangerous · Post by **travelisdangerous** » Tue Jul 28, 2015 7:16 am

Also I don't see what you're trying to prove with those links to my earlier posts. I'm on a website about pudendal neuralgia, that would of course denote that I think I have pudendal neuralgia.

travelisdangerous · Post by **travelisdangerous** » Tue Jul 28, 2015 7:22 am

Also it doesn't matter if its bacterial or non-bacterial prostatitis, I did a test and there was no inflammation or anything else wrong with my prostate, which rules this out entirely.

April · Post by **April** » Tue Jul 28, 2015 7:59 am

TID,

I think everything you’ve said makes perfect sense. I would be worried as well. I’m glad you’ve been posting and sharing your experiences on this forum. I have learned a lot from others on here, and I’m always happy to help if I can!

April

Health Organization for Pudendal Education

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