Health Organization for Pudendal Education

Hello Everyone,

My first post here. I want to try and make this as condensed as possible, but I don't know how possible that will be. There is some sensitive subject matter that I kind of have to mention in order for the whole picture to make sense which is awkward for me to bring up, but hey, we are all here to heal so I hope you can bare with me.

Basically, from '08 to '11 I went through a very dark period in my life. I was going through a pretty deep depression and during this time I was basically drinking and smoking literally every day. *sensitive subject matter alert (it is what it is :/ ) Due to me also being alone and single along with being depressed I was masturbating up to 3-4 times a day, sometimes in a rather rough way, just being careless and not paying attention to my body. This combination was pretty much going on daily for 3 years straight (except a couple 1 month sober attempts). One day in '09, after being really drunk, and masturbating way to aggresively (sorry again ) my penis basically went completely numb which freaked me out incredibly. But as my habits were deeply engrained, I could only manage to give it a 2 day break, being completely naive to the health of my body and still under the influence of deep depression. I thought 2 days was enough, so when most of the numbness went away I was right back at it. Moderate numbness ensued, which prompted me to give 1 day breaks here and there but somehow, under the haze of alcohol and depression, I did not listen to my body's call for healing. I pretty much told myself "I will keep these habits going, as I cannot stop, and when I am able to stop, hopefully my penis can heal." Alcohol/masturbation was too much of an addiction for me to give up, and hence, even with a moderately numb penis and sometimes significant pain I still kept going. In late 2010 (the breaking point), I was masturbating when I felt an extremely sharp pain at the base of my penis, which brought about severe pain for 3-4 days (ended up going to the ER), and about 3-4 months of complete erectile dysfunction. This is where I told myself "now I must stop. I must heal. This has gone too far".

From early 2011till now I have sought psychotherapy, have been on an anti depressant, have been essentially 100% completely sober, and have essentially 100% stopped masturbating (literally only maybe about once every 7 months, if that). Have been taking plethoras of supplements (ALA, benfotiamine, methyl b12, etc). I have completely changed my lifestyle and have been eating very healthy. I have sought help and worked with multiple Pelvic floor therapists (some trained by Amy Stein), seen multiple urologists, and a neurologist. My NCV, EMG, and basic "pin prick" testing have come back within "normal range". All were done on the penis and the pudendal nerve. My MRI of pelvic floor came back "normal". Despite all these tests being "normal", despite all the lifestyle changes, despite all the pelvic floor therapy/trigger point therapy, my numbness has not basically changed whatsoever . During intercourse (have a girlfriend now) sex feels about 50-60% less pleasurable, and about 70-80% less pleasureable during oral sex. My penis still feels significantly less sensitive then it used to. Imagine a limb going to sleep and it going numb. My penis feels if that limb has regained about 30-40% of its blood supply. Thats it. Still a very disconnected feeling, as if it is a rubber attachment almost. It's scary. Very scary. To the point of being surreal. As I was saying, practically cant even tell that oral sex is occurring sometimes. I don't know if I can handle life if this is actually permanent. I know I ultimately brought this upon myself and I beat myself up every day about it, but It doesnt change the constant feeling of despair in me.

After questioning my neurologist, he did say it was a possibility that there could be some smaller fiber neuropathy that might be going on that is unable to be picked up by currently available equipment. This is what Im concerned about. Possible (so far undetected) damage to the pudendal nerve or smaller fiber neuropathy occuring in smaller branches of the penile dorsal nerve. Maybe there is entrapment or compression somewhere that has not been picked up? Im praying to God this isnt permanent. I desperately just want to know whats going on with me!

I dont know where to go from here. I am keep constant with my therapies at home (trigger point release, stretching, meditation) but no progress is being made..

Should I get an MRN? Are there any other more detailed tests that could reveal the problem?? I would so so much appreciate any feedback you guys might have in this regard. Would be so very grateful.

Thanks much.

John

Hi John,
Welcome and so sorry to hear your plight. I cannot give great feedback since I did not have numbness and certainly do not have the area so you may need some info from the guys or just someone with more global knowlege. Anyway I can comment on my MRN experience - my entrapment did not show on the MRN I had at Johns Hopkins (it was not a Dr Filler read MRN) and it was only done to rule out other things. It seems there is no definitive test for us so the PN doctors have to use all the info they can to build a case to decide if they think it is PNE then they find out at surgery if they were right. One test that was positive for me was nerve blocks that took away my pain at least temporarily. Not sure how well that would work for you if you only have numbness and not pain? Some folks also feel the 3tesla MRI from Dr Potter in NY has the best info. Hang in there and try not to overly panic you are in early stages of research and the panic will only make you feel worse. The others should be along soon to guide you and sorry you having to consider this as a possibility. Hang in there.
Janet

Hi John,

The pin prick test is a very basic but I can't understand why yours was assessed as 'normal' when you do have sensory impairment, I would have thought that any sensory impairment was not normal?? Anyway, you asked about other clinical options and yes an MRN or 3T MRI scan (Hollis Potter in New York) is an option, although again it may not show anything as Janet has mentioned.
What do the physiotherapists say, can they feel any pelvic floor tightness? Going to a PN aware physiotherapist would always be a good step, so you are already there with that. Is there any feed back from them that may show a cause?
I would stop berating yourself, if you do have a problem with the pudendal nerve, that may well be the reason why you did masturbate so much; persistent genital arousal disorder, PGAD is a well known symptom of pudendal neuralgia. Maybe you already had a problem with the pudendal nerve which caused PGAD, rather than your actions being the cause, as you suspect. You may never know but you having PGAD in 08 because of PN is altogether feasible. Please don't beat your self up or stress about it, worry or stress may be a factor which contributes to the problem. Your change of lifestyle can only be a positive thing too.
What do the physiotherapists suggest? Have you had a good few sessions with them?
Maybe some cognitive therapies would help. Mindfulness and meditation can also help reduce stress.
Do you have a lack or the same lack of sensation all over your penis btw? I have genital 'saddle' numbness, but it is more evident on one side as it is unusual (although not at all impossible) to have numbness uniformly.
There is a 'heat detection test too which is slightly more sophisticated than the pin prick test, although I have had neither.
Finding a good pelvic nerve specialist doctor may be the best thing for you there is a list on the home page.
Take care,
Helen

Hi guys. Thanks so much for taking the time. I will definitely look into those MRNs or 3t MRIs you mentioned (although Im pretty sure my insurance wont cover ) But if there is a will there is a way. Care credit, etc...

@Helen: Regarding the pin prick test, the doctor's opinion was that is was "within normal limits" but when he was going over different areas, the pricking definitely felt "dull" or desensitized. All the doctors are looking for is some form of feedback. There is no areas in between, either white or black. It still felt very off to me. Also, on my glans penis (the head) he had to apply significant pressure for me to feel something. Normally, I would be able to feel something small with even slight pressure. Not the case there. The glans is one of the most (if not THE most) innervated part of the male body, so something definitely felt off.

Regarding PGAD, never thought of that, but I just think due to my depression I took upon multiple bad habits as a way of escaping. Masturbation is definitely a form of escape. And they all went non stop constant for 3 years straight which definitely had to have thrown something off (acute pain, ED, numbness pretty tell tale signs). As I have changed my lifestyle, am back in school, and have more direction, the urge for these things has vastly vastly decreased to the point of becoming "normal" I would say. I am grateful I have been able to get back on course somewhat though, as living with this fear of my penis never being able to feel properly again always frightens me to my core, along with feeling like on the brink of falling back into depression often.

Regarding where I have numbness, it is throughout my whole penis (not my testicles oddly though, as the pudendal innervates all of these), but definitely more prominent on my glans.

Thanks for your feeedback on the therapies you mentioned. I am working with a pyschotherapist weekly (which I most definitely need to help keep my foundation solid) as well as seeing a pelvic floor therapist about once every 2 months (was going weekly but became too much of an expense). I try to do a lot of self work at home with trigger points, massage, meditation. Also going to bikram yoga and doing light poses feels good for my body. But what you mentioned about looking on this page for a pelvic nerve specialist sounds like a great idea. Will definitely look into that.

If anything else pops in to your head that you can think of nerve wise, im always always open to advice and looking to do whatever it takes.

Thanks again guys,
John

Hi John,

We've all had at least one bad habit in our life so I agree with Helen about not beating yourself up over this. I hope you can find the right answers for your situation. If it's small fiber neuropathy that's a tough one but you can always find pleasure and meaning in life by making other people happy so please don't despair and hopefully over time you will find healing and the right treatments.

Best,

Violet

Probably a bit late here but this sounds very similar to my own symptoms... It all started with me feeling very sexually aroused and sensitive around my penis but later this turned to dysfunction and not complete numbness but a loss of sensation.... For a while it turned to erectile dysfunction but then later this sorted itself out, although the sensitivity was still way down. More recently though the ED has returned somewhat... It comes and goes, I'll go for days feeling extremely aroused and sexual and then this feeling will drop back a little and I'll experience shrinkage and ED....

Hi, I'm sorry for what you're going through. Please also note that some antidepressants also have the secondary effect of reducing libido, and even provoking ED. I had a huge decrease in libido after taking Prozac for my neuralgia, for example. This can somewhat be felt as a loss of sensitivity too..

I felt like Bikelover when I tried the antidepressant for pain.

From personal experience, I know that male orgasms can cause pain in the pudendal nerve. Sometimes intense pain.

Question: did you ever feel pain when you climaxed? If so, and you ignored it, you may have traumatized the pudendal nerve when the pelvic floor contracted so forcibly.

When I had pudendal neuralgia, I had some decrease in sensation in the glans area. Now that the pudendal neuralgia is gone, the sensation has returned.

kone

John I sent a PM to you with some information. I hope it is helpful.