Do i have PN(E) your thoughts/opinion please

[Marcel]

Hi All,

I'm a 28 year old man and live in the Netherlands.

as of January 2014 i have a continuous weird feeling/pain in my scrotum ( rear end ), as if the scrotum is stuck or entrapped in a sort of way.. (and this is one of the better days ) also, the skin seems a little different than before. otherwise, no obvious changes
in January i was on a diet and bought a home trainer (bicycle) which i used a few days but no longer than 30 min.

the feeling started with what i think was paresthesia (itch and burning sensation) in the groin and the perieum. because i had a fungus infection a few months before which produced the same kind of feeling/pain, i thought it was a recurrent fungus infection again. i also had 2 small wounds in my groin. possibly from running.
however, fungus medication did not work.
the paresthesia was gone after i started with the last fungus crème. but i continue to have the weird feeling at the behind of the scrotum.
also at one time my limbs (especially the legs) had some spasms. this occurred once.

also, i have difficulty with sitting. it doesn’t produce the pain i read about here at the forum ( 8/9 on a 10 scale) but still it is very uncomfortable. on good days the pain is 2 on a 10 scale and sometimes there a shorts periods i don’t feel any pain for a few minutes.. on a bad day/evening it is 6. i can sit on a chair (not to hard of course) for a few hours if I have to. ( especially with the neck cushion I’ve bought ( thanks to this site). afterwards i have pain in my sitting bones. But not the perineum or something. However, if I sit on a relatively hard chair, my buttocks go numb.
also, sometimes after sex ( the next day) there is increased pain ( burning sensation if the scrotum skin is scratched by my pants. after a day, it is back to the normal state ( 2).


in 2010 ive had a pelvic floor dysfunction which resulted in a very tensed pelvic muscle. ive taken antibiotics for almost 6 months. after that i started fysical therapy which proved a big succes. within a few days the pain was less and although ive had some occasional flare ups, i was cured competely within a year or so. however, this condition gave me a lot of stress because of the intense pain and there does not a day go by when i do not think about that time in my life.

because of this I thought I could have the same condition again. So I consulted a Pelvic floor PT.
She agrees that it is my pelvis all over again but the pain feels different ( and luckily for me a lot less!!) also, the breathing, stretching and kegel exercises don’t give the results like back in 2010. I think they give me only slight relief.
I questioned her about PN(E) but she said I don’t fit the criteria ( to less pain, and cycling for a fews days for less than 30 minutes can’t be the cause)
She also did a sensory test with a paperclip ( pin prick?). no sensory loss or pain either way. It felt normal.
My home doctor says it’s all in my head. ( but he is a moron!!)
However, my partner and mother says I’m acting differently possibly because of stress. There are some stress factors at work and home and if I think back, I think I have had stress ( onconsiously) for a long period of time. I also went to a psychiatrist 2 times because of this. I went to a period of catastrophic thinking because of this. After a short vacation this passed away luckily.
I have an appointment with a neurologist in 2 weeks.
I know you guys here aren’t docters but you HAVE experience. So I wonder what your thoughts are.

any background intell:
I am a financial advisor so i have a sitting job. however, the work demands that i get up, stand, and sit down again many times a day. so no prolonged sitting hours.
I’ve had a infection in my testicles in 2005 which went on for almost half a year. Beacause of this, my left testicle is a lot bigger than the other one.
Sometimes I wonder if it is all in my head (because of stress). I tend to be a little hypochondriac


Regards,
Marcel

[Violet M]

Hi Marcel,

Welcome to the forum. I don't think this is all in your head. Many people have been told that before but it's really just an excuse when the doctor can't figure out what the real diagnosis is.

I disagree with your PT that since your pain is not high you don't have PN. My pain started out mild and some people have mild PN pain off and on for many years. So, I don't know if you have PN but the fact that your pain isn't severe doesn't mean anything. Eventually mine became severe.

Have you had an MRI to rule out other causes of your problem?

Violet

[janetm2]

Hi and welcome Marcel,
I am sorry to hear about your various issue.I will admit I am not sure whether this falls in the PN or PNE (which doctors could admit they are not sure rather than say it is in your head!). If PT thinks it is the pelvis does she have a plan to help you. Kegels are usually something to avoid in the PN world but other stretches and therapy can help if muscular and not entrapped. I was limit sitting and no biking. Although pain is low it could be just the beginning and the time to try and figure out what is the problem. The FAQs off the homepage list many ideas to try and get treatment and diagnosis, criteria is there as well as lifestyle changes and medications. Some tests are done to rule out or diagnose other conditions that have similar symptoms. As noted this website is for education because sadly knowledge of PN is limited in the medical world. PN aware PTs and doctors are listed but are limited in numbers and geographically. I hope the neurologist can help. You may be able to bring some info from this site to see if they think it applies. Hopefully someone else can provide some moe insight and advice based on your info. I jusy wanted to welcome you and let yo know you are not alone and although stress does not help it does not have to be the only reason! Hang in there.
Janet

[Gary]

I don't think your doctor is right regarding not fitting the criteria i.e. too little pain, and cycling for a fews days for less than 30 minutes, etc. Inactivity can result in very little pain. PNE at the beginning can cause little pain. Sitting down for a little while may be fine for some. Some people may be destined to be entrapped, so 30mins of cycling is irrelevant. Scrotal skin changes can be caused by PNE, I too had that symptom, though it has now gone.

I think Kegels are demonized unfairly. I am a believer in their benefits pre or post treatment.

[Marcel]

Thnx for all your replies everyone.

@ Gary, what did you notice about your scrotum? and are you cured now? and if so, how?

[Gary]

I was cured for ten years following Nantes bilateral TG decompression. I have since succumbed again to PN/PNE, 4 months ago.

I had no scrotal skin issues first time around. At the beginning of my 2nd bout of PN/PNE the skin felt strange, the texture felt different, perhaps more wrinkly, slightly numb, it felt slightly dryer/rougher, but yet it didn't really look different to before. This symptom then vanished after 3 or 4 weeks and other symptoms grew and took their place.

[blightcp]

I was cured for ten years following Nantes bilateral TG decompression. I have since succumbed again to PN/PNE, 4 months ago.

I had no scrotal skin issues first time around. At the beginning of my 2nd bout of PN/PNE the skin felt strange, the texture felt different, perhaps more wrinkly, slightly numb, it felt slightly dryer/rougher, but yet it didn't really look different to before. This symptom then vanished after 3 or 4 weeks and other symptoms grew and took their place.

I had TIR surgery in 2010 and TG in 2012. The TIR relived my right side but the left symptoms persisted.

I also had similar symptoms, with more numbness and intense burning pain. This started 2 weeks after my TG. The PN was scarred onto the SS ligament and had to be cut free. Durring my last 3 pain injections that is the spot that screamed when the medication was delivered.

The scrotum was so sensitive that any vibration caused pain, a washing machine spinning kept me off of the first floor completely. Its better now but heat and touch are still painful.