Unusual and complex case of PN?

[Edward12]

Hi. I'm male, 34. I have a history of malnutrition that led to osteomalacia (severely reduced bone density), which altered the shape of my bones (arms and legs, likely pelvis as well). Im not sure if this has led to my pudendal nerve problem or not, but a couple months ago I began to experience severe erectile dysfunction and penile numbness (along with numbness in buttocks). I also have pain in my legs and feet, apparently neurological.

I'm totally devastated by what has happened, and wish that I had an experienced third party to talk to about it. If someone could PM me or even call me on the phone, my life would be suddenly much less hopeless.

I have seen Dr. Conway in New Hampshire, who has recommended surgery. I initially chose to pursue a nerve block (which I think would make the numbness worse, and this is my primary symptom). I have the consult with a pain specialist next week. I have also entered physical therapy, which is an agonizing hour's drive away (assuming no traffic. Lately I have been lying in the back seat while my parents drive me to my appointments, but even lying down, in bed or otherwise, does not provide enough relief). I believe that that the few sessions of physical therapy that I've had (rectal work) may have made things worse, but it may be a situation where I need to do it myself in a tentative, experimental way, and it may be that things can get worse before getting better.

However, a few nights ago, after a day or two of feeling some improvement, I suffered a major worsening after sitting in a certain chair for around an hour. This has pushed me much closer to surgery, for lack of any other clear-cut option. (I have been told that if I have a nerve block that I must wait three months before I can be eligible for surgery.) I know that isn't the best approach to take, but I am in despair in this and in too many other aspects of my life. And yet, at this point, I can't even say with certainty that the surgery would help, based on my history and perhaps unusual cause for an already unusual condition, or even if this is the result of a larger pelvic problem, such as sacroiliac joint dysfunction (based on back pain that I experienced at the onset, which has now subsided).

Thank you for any support that you might provide, or suggestions specific subforums where I should post.

[IHatePNE]

Hi there I too suffer from penile numbness and have dealt with this curse for almost 3 years now so I can relate to how life altering this condition can be. Here are a few things I would like to ask or point out to you:

Have you been tested for any alternative causes for your penile numbness and ED such as hormonal tests (bioavailable testosterone, estradiol, Prolactin, Progesterone, DHT, DHEA, FSH), assessments of your thyroid, kidney and liver function, prostate, spine and diabetes tests? There are many causes of penile numbness and ED besides PNE as I am sure you are aware and it's something to think about before undergoing any kind of invasive treatment.

I note you are seeing Dr. Conway and that he seems to want to operate on you. Here is what he has written regarding waiting for surgery:

http://www.pelvicpainrehab.com/pelvic-p ... -answered/

If you read the article you will come up with this quote from Dr. Conway:

"but the patients also actually have end organ dysfunction, such as incontinence or they have numbness. Those patients might be better served to move more quickly to have the nerve operated on because the worry is the longer you leave it at that level of dysfunction, it will just get worse and worse and may be unrecoverable. So that’s the one time where I will be up front about surgery."

It would seem that Dr. Conway believes that when the penis is numb it is best to move more quickly towards surgery to prevent the numbness from being permanent. In contrast to this my Pelvic Floor Physiotherapist (Nelly Faghani), Chiropractor (Dr. Kirk Andrew) and PN Urologist (Dr. Kenneth Peters) have all told me not to worry about this becoming permanent anytime soon and that I still have plenty of time to try more conservative therapies and testing. So far I have played the patience and caution game and to be honest it hasn't worked for me so far and I often get anxiety attacks wondering if I blew my chance to fix this earlier.

Regarding Pelvic Floor Physiotherapy I would just like to say that the first few sessions I had were rather unpleasant as well but the sessions soon became much easier to tolerate and after a few months of Pelvic Floor Physio and Shockwave Therapy my Pelvic Floor Dysfunction is mostly gone...so don't give up too quickly. Unfortunately in my case fixing did very little to help my penile numbness I only got some temporary improvements after the shockwave sessions.

[Violet M]

Edward, did you have an MRI of the lumbosacral area, including the lumbosacral plexus to make there there is nothing impinging on the sacral nerve root or any type of spinal radiculopathy?

Violet