My peronies

[Forester]

Hi I am a 34 year old male who has suffered from peyronies disease for at least 2 years now.  The curvature is really not that bad it bends ever so slightly into a banana shape I also have a congenital curvature to the left.  What makes my peyronies so difficult to live with is that I have lost any pleasurable sensation in my penis.  During the early stages of the disease the sensation would come and go the penis would be numb for a week or two then boom i would regain sensation for a week or two and the cycly went on and on.  Eventually about 1 year ago I the disease took a turn for he worst as I then became numb most of the time occassionally I will experience a partial return of sensation that lasts for maybw 2 days.  Erectile function is good most of the time but I occasionally experience erectile dysfunction where the penis buckles where some of the plaque is or where the penis just wont get hard at all.

I finally got a urology referal as I went through a string of GPs who kept telling me it was all in my head or who would give up after investigating me for back problems or hormonal irregularities.  The urologist told me that verapamil injections were a waist of time and to try some vitamin e then come back to see him if there was no improvement and then we could discuss surgery.  When I returned he advised me that the numbness I have may be permanent if the penile nerves have been damaged but that sensation may return after penis straightening surgery IF the numbness was caused by the plaques interacting with the nerves.  He said that he was not the best candidate to perform the surgery and gave me a referal to a DR Ethan Grober at Mt Sinai Hospital in Toronto.  Unfortunately Dr GRober apparently can take months to respond to a referal request and even when he does i understand that the wait times are VERY long...my mental health has already deteriorated a lot.  I have been looking to find a good american surgeon who is also affordable (probably impossible to find).

I am really concerned about getting the right surgeon as well as the right surgery done as i thhink my case is very unique...there is very little curvature BUT the plaques cover much of the shaft top and bottom like there are several circular plaques stacked over one another.  How can a surgeon use penile curvature as a guiding point for surgical correction when there is hardly any curvature? There certainly is a lot of distress though caused by the numbness so I need treatment.  If they only cut a certain amount of the plaque to straighten the penis...what if the plaque that was not cut is what is interacting with the nerves and causing the numbness?  I am no doctor but common sense would dictate that the entire plaque should be removed that way there would no more plaque to irritate or press on the nerves...a penile prosthesis would then probably be necessary to deal with the erectile disfunction that frequently accompanies erectile dysfunction...but I could not afford both surgeries (i think penile prosthesis alone can cost 20000$).  If I wait to see DR GRober which could take over a year I am worried that the nerves may become permanently damaged from interacting with the plaque by the time i even get a first appointment with him.

Anyway thats my story great forum you guys have here

[Jonbinspain]

There are guys here who are far more experienced and knowledgable than me. However, it seems to me that you must get started on some plan of action to fight this - not just wait. Vitamin E may be of some help. Of far more help will be Pentox, ALC, Arginine, to name the main supplements. These will increase blood flow to the penis & help fight the inflammation.

It is vital that you maintain a good blood flow to the penis. It will also help your ED problems. Yes, you need to se a Peyronie's specialist, but in the meantime, you must start fighting back against this disease.

Read all you can here. We all suffer, or have suffered with the same problem. I think it's safe to say that the collective experience of fighting this disease is unparalleled anywhere else.

[Forester]

Thanks there is actually no more inflammation I have tried Vitamin E and ACL and Arginine and they were of no help. I have also tried Ephrinol and castor oil...no luck.  Have not tried pentox though.

[LWillisjr]

In the far majority of cases Peyronies will cause a curve often combined with pain. I hardly recall any cases where Peyronies only caused numbness. And even at that I don't understand how this can be a result of plaque formation. Plaque will form around the nerves.

I don't mean to come across as critical, and it is possible you have a mild form of Peyronies Disease (you stated there was hardly any curvature). I really wonder if you have some other condition that is causing the numbness? I wouldn't settle for the diagnosis that that your numbness is due to your Peyronies Disease. I would be investigating other reasons for your numbness symptoms.

[Forester]

Maybe i overstated it with regards to curvature but it is definitely not that bad there is a banana shaped curvature along with some "warping" effect but it not that bad my gilrfriend of 6 years claims that she can barely tell the difference from when she first met me.  I cant see how it can be described as mild though the urologist commented that is was a very lengthly plaque and even I can see that the plaques cover much of the shaft.  As far as other conditions go: the GPs that I saw initially (before I had a peyronies diagnosis) gave me a back MRI to check for back problems (ex:herniated discs) the results came back negative.  I also had several hormones checked (bioavailable testosterone, estrogen, prolactin, dhea, progesterone) and the results were all normal.  Had a test done for STDs and they came back negative.  One GP thought I suffered from "Sexual Anhedonia" which is often caused by problems with Dopamine regulation in the brain...he put me on Pramipexole...although it did help my mood for around 4 months there was no improvement in my condition.  I am also not diabetic.  Furthermore the numbness started at around the same time as other Peyronies Disease symptoms started occuring (discomfort during erections and post ejaculatory discomfort).  My urologist advised me that he has dealt with cases of peyronies disease where numbness was one of the symptoms he also ruled out Pudendal Nerve Entrapment.  Thank you for your response but I think that there are very good grounds for believing the the Peyronies Disease and penile sensation problems are interelated.

[funnyfarm]

I know my doctor has a device that will measure numbness on the surface of the skin and by taking readings throughout the penis, pelvic area, they can isolate where neuropathic dysfunction is originating from.  It very likely may not be the scar tissue, esp if the entire penis is numb.   And most surgeons will only perform surgery if there is not an obvious mechanical problem causing your symptoms.  They will not remove tissue hoping it will improve sensation but not really being sure.   Have you ever had a pelvic injury in the perennial area ?  

Until you can get a more definite diagnosis it will be tough to come up with a treatment plan.   Finally don't worry about the scar hitting the nerve and damaging it more.  It is likely not the cause and even if it was nerves have the ability to regrow, just like they do after you cut your skin.  

Finally I know some of the guys on the hard-flacid forum have described simliar numbness.  You might want to look into that.

Be persistent, patient, and do not give up hope. And remember every time you can rule out something, you are closer to finding the answer.

[Forester]

No I have never had a pelvic injury. What you are talking about with regards to your doctor's device sounds like a nerve conduction test and yes I have been wondering if that would be useful (for example if it is one of the plaques maybe they could then know where to cut or perhaps it is a blood vessel pinching the nerve...i dont know).  The numbness in the penis is hard to describe its NOT the case that the entire penis is numb throughout the penis there is an odd mix of numbness and altered sensations that is hard to describe what is distressing is the lack of pleasure sensation.  There are also very strange sensations when touching certain parts of the plaques.  Furthermore during the earlier stages of my problem when sensation was coming and going I could lose sensation when I touched a very specific part of my penis (the bottom right) when I look now that area is the site of the largest scar lump there is on the penis.  I should also mention that I had a prostate ultrasound and my PSA levels checked...normal.  A bladder, pelvic and scrotal ultrasound revealed nothing other than a small hydrocel on one testicle and a little bit of calcium build up on the other one.  I am not on any medication (some SSRIs can cause genital anesthesia and some people who have taken hairloss medication have claimed that it has caused genital numbness) and i dont use drugs (apparently prolonged cocaine use can permanently ruin the pleasure pathways in your brain).

I appreciate and welcome the feedback even if critical but I would love to hear any specifics as to why many of you are so skeptical with regards to the relationship between the large peyronies plaques on my penis shaft and my penile sensation problems.  There are many causes of penile sensation problems and I cant think of any more than the ones that I have talked about and tests for these things have all come back negative.  The peyronies plaques are the only lead I have, the sensation problems started right around the same time as other peyronies symptoms (erectile discomfort) and my urologist advised me that he HAS encountered cases where peyroneis disease has lead to numbness of the penis.

[Hawk]

I have little to add here except that you should hve been on Pentox a long time ago.

As far as a surgeon removing all the plaque, that would require a graft.  We often hear the phrase I have paque on my tunica, or shaft etc  in reality plaque does not grow ON the tunica (like our often quoted scotch tape on a balloon). The plaque or scar tissue replaces the elastic tunica tissue.  Take the plaque out and you have a hole, a void with no tunica tissue so you must graft.

[funnyfarm]

Yes it is the nerve conduction test.  The general direction of the nerves start at the base and extend to the tip of the penis, so it is pretty easy to tell if a scar of something else is effecting a nerve branch.  I would recommend doing this, it is fairly quick and non invasive.

As Hawk pointed out you should be taking pentox, it will soften the scar most likely and improve blood flow, which may help.

I also get loss of sensation following a flare up of inflammation.   Since your symptoms seem to come and go, it is possible you may have low grade inflammation that is effecting nerve function.  

Have you altered your diet at all, or tried supplements ?  That is another option.  I would also start making a journal of what makes it better and worse throughout the week.  Overtime you will recognize trends and make adjustments to improve symptoms.

[LWillisjr]

Forester,
Please understand we are not trying to be critical, or not accepting that you have Peyronies Disease. Since your symptoms aren't that typical, just trying to explore some other possibilities. I spoke to a guy on the forum here once, who also had numbness and was convinced he had Peyronies. After I spoke to him on the phone and he also stated that he had pain shooting down his legs I told him to get to a neurologist. After an MRI it was determined he had a pinched nerve in his spine and this was the cause of his problem.

So just trying to keep the options open.