PNE/PN and Sexual Disability

[IHatePNE]

@ Snowmanman,


I don't have any sort of tingling numbness no and yes I can feel pain from a pinch as well as from a prick. The "numbness" I have is hard to describe what I have is a loss of erotic/pleasurable feeling in the penis and this is accompanied with either uncomfortable sensations I the penis (especially at the bottom of the penis) or a general numbness which I can only describe as the penis feeling like a rubber hose. There is also a sort of disconnection between my brain and my penis for example if I look at erotic pictures there will be no response from the penis at all. When there are breaths of life in the sensation in my penis the pleasurable sensation I am able to feel is as a result of direct stimulation of the penis only. Visual stimuli has not had an effect on my penis for about 2 years now.

I was able to convince my GP to try Pramipexole on me because he was of the impression that this was all in my head either as a result of a neurotransmitter problem or psychosomatic issues (I am a life long sufferer from OCD and Asperger Syndrome so that lead him in that direction initially). I found some articles pointing out to the usefulness of dopamine agonists in treating sexual anhedonia and since he had a lot of experience with this drug (treating other problems like restless leg syndrome) he felt comfortable in trying it on me. My GP is a very think outside the box type guy who is willing to try things and most GPs for better or for worse are not like that so I don't know what sort of luck you might have with yours. Again if you run into trouble there is always Dr. Goldstein he is a world renowned expert on sexual problems including sexual anhedonia.

I am looking forward to having my Pelvic Floor evaluated by a Pelvic Floor physical therapist this July to see if a tight pelvic floor might be playing a role in my penile problems. I think that is something you might want to check out too.

[snowmanman]

@ Snowmanman,


I don't have any sort of tingling numbness no and yes I can feel pain from a pinch as well as from a prick. The "numbness" I have is hard to describe what I have is a loss of erotic/pleasurable feeling in the penis and this is accompanied with either uncomfortable sensations I the penis (especially at the bottom of the penis) or a general numbness which I can only describe as the penis feeling like a rubber hose. There is also a sort of disconnection between my brain and my penis for example if I look at erotic pictures there will be no response from the penis at all. When there are breaths of life in the sensation in my penis the pleasurable sensation I am able to feel is as a result of direct stimulation of the penis only. Visual stimuli has not had an effect on my penis for about 2 years now.

I was able to convince my GP to try Pramipexole on me because he was of the impression that this was all in my head either as a result of a neurotransmitter problem or psychosomatic issues (I am a life long sufferer from OCD and Asperger Syndrome so that lead him in that direction initially). I found some articles pointing out to the usefulness of dopamine agonists in treating sexual anhedonia and since he had a lot of experience with this drug (treating other problems like restless leg syndrome) he felt comfortable in trying it on me. My GP is a very think outside the box type guy who is willing to try things and most GPs for better or for worse are not like that so I don't know what sort of luck you might have with yours. Again if you run into trouble there is always Dr. Goldstein he is a world renowned expert on sexual problems including sexual anhedonia.

I am looking forward to having my Pelvic Floor evaluated by a Pelvic Floor physical therapist this July to see if a tight pelvic floor might be playing a role in my penile problems. I think that is something you might want to check out too.

Yup, my numbness feeling is the same. Feeling like a rubber hose is a good way to describe it. I do still have a sex drive, but not as strong.

Again if you don't mind, how exactly did your urologist diagnose you with Peyronies Disease? I'm not really familiar with it. You said that getting it treated helped with your numbness a little bit. Is Peyronies Disease something that can cause numbness like this?

[IHatePNE]

The Urologist diagnosed Peyronies Disease by physical exam in fact I myself was able to see and feel the plaques on the penis. Peyronies Disease consists of fibrous plaques on the erectile bodies of the penis and they usually result in curved erections that can be severe enough to prevent sexual activity. Peyronies disease can also lead to erectile dysfunction and penile pain and discomfort and yes it is possible for the plaques to cause penile numbness if they are compressing the nerves above them the first urologist I saw had seen several patients in the past who had numbness in the penis along with peyronies disease. Peyronies disease, much like PNE, is a nightmare condition to have as there are few doctors who know how to treat it properly, the conservative therapies available help many men but do not give consistent results and thirdly the surgical treatments available have serious risks including penile shortening, erectile dysfunction and penile numbness (yes peyronies surgery can actually CAUSE penile numbness). For more info on peyronies disease you might want to visit http://www.peyroniesforum.net/index.php.

Yes my numbness symptoms were slowly improving during my treatment for Peyronies disease BUT things have worsened yet again during the last month or so. Correlation does not prove causation and the fact of the matter is Pentoxifylline (the drug they have me on to treat PD) has off label use for peripheral neuropathy so the improvement may have had nothing to do with reducing the peyronies plaques.

[HerMajesty]

Have you considered a PNMLT or pudendal EMG to rule out or confirm a problem with the pudendal nerve? This does not sound like a typical pudendal presentation. It also does not sound like a pudendal block would be useful for diagnostics given your symptoms.

[stephanies]

Despite my pain, my EMGs and PNMLTs were always normal.

Stephanies

[IHatePNE]

Have you considered a PNMLT or pudendal EMG to rule out or confirm a problem with the pudendal nerve? This does not sound like a typical pudendal presentation. It also does not sound like a pudendal block would be useful for diagnostics given your symptoms.

Yes I am interested in any test that can help with a treatment decision whether it be nerve conduction tests, MRN or 3T MRI...etc. It will take a long time for me to see Dr. Gordon at Mt. Sinai though and I still have to ask my urologist for a referral. Why do you say that this does not sound like a typical pudendal problem is that due to the relatively few symptoms I am experiencing (penile numbness, ED and penile discomfort but no sitting pain...etc)? Perhaps it is only the penile dorsal nerve that is affected which is why I am only experiencing problems there? Clearly the nerves to the penis are being chocked out somehow and somewhere.

[HerMajesty]

You said you came to suspect PNE by process of elimination because what else could it be, but to me there seem to be LOTS of other possibilities, especially because PNE tends to be rather rare and IMO overdiagnosed - I say that because i have seen people rush into surgery and / or be offered surgery based on a cluster of symptoms, who turned out not to have PNE.
I think it is good you are going to see a pelvic floor PT because of the long standing nature of your bladder and bowel issues. I would be surprised if you do not have severe pelvic floor dysfunction. That in itself could cause some of the problems. If your pelvic floor is found to be hypertonic, you might want to look into augmenting PT with biofeedback to learn to keep the pelvic floor relaxed.
You have known Peyronies Disease, and also priapism which might or might not have a neural cause: The cause of both the ED and priapism might be a circulatory issue. Alternately, both priapism and ED can be side effects of some meds. You probably know this / have researched it better than me, but priapism is generally considered an emergency because if it is prolonged it can cause penile damage, and I am not sure what form that damage takes (?) Any possibility untreated episodes of priapism could be contributing to the other issues?
Here is one interesting avenue to explore, you said, "Yes my numbness symptoms were slowly improving during my treatment for Peyronies disease BUT things have worsened yet again during the last month or so. Correlation does not prove causation and the fact of the matter is Pentoxifylline (the drug they have me on to treat PD) has off label use for peripheral neuropathy so the improvement may have had nothing to do with reducing the peyronies plaques." - what about a trial of a med such as gabapentin which is used for peripheral neuropathy but should not help the Peyronies Disease at all - might help sort out that situation.
To me it seems like a lot has been unexplored, and the symptoms you list have many potential causes aside from pudendal nerve. You do not have the classic pelvic pain of PNE - I know not everybody does, I didn't, but then it also turned out I did not have PNE nor would I have benefitted from PNE surgery (I had PN arising from a problem with the S2 nerve roots). I have been on this board a long time and seen a small minority of people who have all of the following: 1. a true case of PNE verified intraoperatively 2. a successful PNE surgery which fixes more problems than it causes and 3. A resolution of the problem to their satisfaction post-op. I have seen a significant number where one can no longer sort out which symptoms were caused by the original problem, and which symptoms are due to damage from unsuccessful surgery (or surgeries). I suspect you are quite intelligent beacause you used my all time favorite phrase, "correlation does not prove causation" - so you should understand this bit of advice: Don't come to any diagnostic conclusions based on 'process of elimination'. Instead look for ways to identify pathology. If treatment has a very minor potential for harm - such as trying out a peripheral neuropathy med - that is reasonable. But as far as high-stakes invasive treatments, don't undergo any without first concretely identifying the underlying pathology. You seem reluctant to have Peyronies surgery because of potential adverse effects, and I hope you are just as cautious when it comes to PNE surgery. At least you know definitively that you HAVE Peyronies Disease.

[rea]

When my pn symptoms first started, I was desperate. I was offered a consultation with the doctor in Houston (don't think he does the surgery anymore). If I had not read and listened to the advice from here, I would have had the surgery and been in a world of trouble. After returning from that trip it was obvious something else was wrong. My pelvis was so misaligned because of SIJD. I also didn't pursue surgery with Dr. Hibner. He was so helpful and understanding and I had classic symptoms but I didn't go back for surgery, which would have been the next step. My pn has come from other pelvic issues. Which one(s) I can't say. Have had surgery for SIJD and piriformis syndrome and will probably have to have more surgery but I'm so grateful to those on here who shared their experience and support. The PN just started first, don't know why but with time, it has lessened without surgery. Each of us has to make decisions for ourselves.
And good advice of seeing a pelvic floor specialist, exploring other possible options, etc., was what helped me. I'm still learning how my body works and searching for help. I pray you find your answer.
Marie

[IHatePNE]

Don't come to any diagnostic conclusions based on 'process of elimination'.

It was my understanding that PNE is diagnosed via a process of elimination as per Dr. Hibner in this interview here:

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

When asked how PNE is diagnosed his answer is: "There is no way to definitively diagnose PNE. It is a diagnosis of exclusion." Obviously I am not a doctor and it is not up to me to diagnose myself but we are running out of causes here and it looks more and more like a PN/PNE or pelvic floor dysfunction problem.

Regarding priapisms yes my understanding is they can potentially cause penile damage if they last more than 4 hours AFAIK they have never been that long though I can't be 100% sure I don't think what I experience are true priapisms since I CAN make the erection go down if I empty my bladder and walk around for about 10 minutes or so but these prolonged erections WILL NOT go down unless I do exactly that (empty my bladder and walk around for a bit). I suppose I could ask my Urologist to see if he would could investigate any circulatory problems.

Regarding surgery: Obviously I would not go into surgery without having a 3T MRI or MRN done to rule out other pathologies in the pelvis. Also due to the high cost of surgery I am not really able to jump into it until I get help from OHIP anyway. I COULD afford (but not without difficulty) afford dorsal nerve release surgery with Dr. Aszmann but I would like try PT of shockwave therapy first and Gabapentin might not be a bad idea either. The concern I have about waiting too long for surgery is not due to any impulsivity on my part but do to worrying comments by Dr. Conway in this article here (same one as the Hibner one above):

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

Dr. Conway writes the following: "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."

[HerMajesty]

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.

The "hurry up" thing is a double edged sword of sorts - As I said I had compression of the S2 nerve roots, and yes it would have been lovely to have been diagnosed and treated much more promptly because although surgical decompression did improve my situation, I do have permanent damage due to length of compression time before treatment (8 years). Other edge of the sword: outcomes are unpredictable. A friend of mine who was much earlier in the same disease process as me and much more functional, got the same surgery I did. I have the survivor's guilt of having encouraged her saying it is a progressive disorder, irreversible damage is caused by a longer period of compression, etc...Well, her outcome was not good and she is much less functional than she was pre-op. Level of post op scarring or other complications is very individual with these surgeries.

My main concern is that when it comes to diagnosis through process of elimination, you are dealing with doctors who are very PNE - oriented and so PNE is something they are very likely suspect without true due diligence to eliminate other possibilities. There seems to be a relatively low success rate which I believe is due to the number of patients who did not really have PNE to begin with. It is truly up to YOU to ensure due diligence in eliminating all other possibilities, and in amassing as much diagnostic evidence as possible, to support a decision to decompress the dorsal nerve.

I responded to your post because I was somewhat alarmed at two things:
1. The vast number of alternate explanations for ED, priapism, and bladder / bowel issues - I really do not see that you are at a stage where neurosurgery needs to be brought into the discussion. PT is a great idea, and if your Pelvic Floor PT is not well trained in pelvic alignment, you should also see a Sports PT with experience in evaluating SIJD (sacroiliac joint dysfunction / pelvic misalignment). I am aquainted with a male who used to post here, who had similar issues to you for many years due to undiagnosed SIJD and resultant muscular issues - the solution was mainly through Sports PT's as well as some other types of PT and excercise: definitely not surgical. Always lean to most conservative first.
2. I know ED in itself is extremely distressing to a young male, and that you feel now like you would do anything to fix the problem. I also have observed the other side of that, with people such as my friend I mentioned above, who were very distressed with their pre-op state but are so much worse post-op, that they would like nothing better than to go back in time and have their pre-op problems back. Chiefly I am concerned that you do not wind up with chronic pain: it is an experience you cannot imagine until you have been there.

I don't have an agenda to scare you away from surgery. I have an agenda to encourage you in due diligence to find evidence of your underlying pathology. You should be checked for pelvic floor dysfunction, which you almost certainly have, and be treated: 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.

When I first came onto this board I was under the dangerous naive assumption that if I could identify pudendal entrapment, I could just have the nerve freed, snip snip, all taken care of. I am grateful to everyone who waved the red flag on my 1st post (which you will not find on this board, it was so long ago that it was on a different board which was the precuror to this one) - and got me to see it wasn't that simple.