PNE/PN and Sexual Disability

[IHatePNE]

Yes thank you for your imput ED is very stressful for ANY post-pubescent male but penile numbness is of an order of magnitude worse (an erect penis with no pleasurable feeling is like wearing a plastic dildo). I agree there are alternative explanations for ED and bowel and bladder issues but would these alternative explanations explain the penile numbness (which is in fact the main issue that I wish to resolve the ED is of course important too but only if there is an accompanying resolution of the penile numbness...the bowel and bladder issues are only minor problems in comparison I only bring them up to aid in diagnosis in case they are interrelated). I will bring up circulation issues with my Uro on my next visit and I will go through with PT I have an appointment with Nelly Faghani if anyone in Canada can help me with pelvic floor issues she can. Dr. Irwin Goldstein is someone I might visit before I undergo any pudendal nerve or dorsal nerve surgery as he is a world renowned sex expert if anyone can rule out alternative causes for penile numbness and ED he can. I am well aware of the fact that surgery is risky and that if it does not go right than things can get A LOT worse than just a dead dong it is very distressing that I can not read about any successful dorsal nerve surgeries here but that could be a sampling problem due to the fact that people with negative experiences may be more likely to post about them.

[HerMajesty]

The nerve might be compressed, hence the numbness, not by a true entrapment which needs sugical decompression, but in tight bands of muscle or another similar structural situation which could be resolved with PT.
A limited number of doctors do dorsal nerve surgeries. I would expect them all to be honest with you about success rates / past outcomes except Dr. Dellon. Avoid him like the plague. Any questions on that, just search his name on the site.

[Violet M]

PNE is to an extent a diagnosis of exclusion, but there are nondefinitive indicators such as the 3T an PNMLT which can give you an idea as to whether or not you are on the right track.

I have observed that people with true PNE tend to have more trouble tolerating PT and get less benefit from it, than those with other pathologies. You should be checked for SIJD. hernia including occult hernia. circulatory issues.look into possibility that Peyronies Disease could be the primary cause.

Just wanted to mention I agree with Hermajesty about having some more diagnostic tests although I have to say my PNMLT was normal on the side of my worst pain so I don't put a lot of stock in the PNMLT but if it turned out you had some abnormal numbers that could be significant.

Also agree with HM about PT tending to make people with true PNE have flareups and not much benefit. Hope you can get some answers seeing Nelly. I've heard she's excellent.

Violet

[snowmanman]

Hey IHatePNE,

I'm still trying to figure this problem out. My doctors are still lost. My general practitioner has referred me to see and endocrinologist because of my testosterone levels. My levels came back just above the reference range which my doctor said was fine, but that it was a little low for someone my age. He doesn't know if getting my testosterone levels up would help with my sensation, but he said it would be worth a try. I see the endo in August.

If you don't mind I'd again like to compare my symptoms to yours. Is your numbness only in your penis? What about your testicles or perineum? Do those areas feel fine?

For me, I feel numb all over down there. My penis, testicles, pubic area, and perineum all feel numb to me. I was wondering if you felt the same?

[IHatePNE]

@ Snowmanman

I do experience occasional reduced sensitivity in the testicles/scrotum area. There are occasional strange sensations in the anal area but I am prone to getting internal hemorrhoids so I don't know if the strange sensations are symptoms of the hemorrhoids or some other pelvic issue. The perineum area between the scrotum and anal area occasionally feels uncomfortable but most of the time things feel fine down there.

I think seeing the endocrinologist is a great idea he/she may know of other hormonal deficiencies/endocrine issues that can cause your symptoms besides just low T. While you are at the endocrinologist see if he/she will be agreeable to test you for metabolic syndrome via a 2hr GTT, most doctors don't dig that deep but you can always ask.

[Richard1969]

IHatePNE-

Dr. Kenneth Peters in the greater Detroit, Michigan area sees men for PN, & PNE. He is one of the top specialist in the world. He sees male patients at his Royal Oak, Michigan private practice. I will mention that seeing him is not an immediate appointment. His standard time for an appointment is 4-8 weeks out.

-David

[Laramarie]

Hi Richard
Would you have any idea how much an assessment would cost with Dr Peters in Detroit? I live in Toronto Canada and will have to pay for this. I am having a hard time with voiding and extreme pain since my TG surgery with Hibner and not sure if my insurance will put out more cash.......I am interested in an interstim in the future if my pain does not improve and I have read that Dr Peters has had great success with PN patients!

Thank you kindly
Lara

[IHatePNE]

@ Richard1969

Thank you for the information Dr. Peters is not that far from where I live (I am from Toronto as well). I have not heard much in terms of what kinds of treatments he does except for PT and nerve stimulation however, hopefully he has more in his toolbox that just that. 4-8 weeks for an appointment is not that bad it can take 8 MONTHS to get an appointment with Dr. Gordon at Mt. Sinai hospital in Toronto and I don't even have a referral yet.

@HerMajesty

If Dr. Dellon is a no go doctor for Dorsal Nerve Decompression (or for PN/PNE period from what I have read) then I guess that only leaves Dr. Aszmann as a candidate should I go that route since Dr. Hibner no longer treats men.

[IHatePNE]

I had my Pelvic Floor Assessment: My pelvic floor is supertight and there are trigger points on my lower belly and legs. Will be starting weekly treatment my only homework for now is deep breathing 20 minutes a day and avoiding straining while urinating.

[Violet M]

IHate PNE,

Hope PT will be the answer for you. I'm glad to hear your PT is not being too aggressive to start out and that you haven't been assigned stretches and kegals.

Violet