PNE/PN and Sexual Disability

[IHatePNE]

Hi I am a 35 year old male from Toronto, Canada who possibly suffers from Pudendal nerve issues. My issues involve numbness and severe sexual disability there is no pain...unless you count mental and emotional torment as pain.

SYMPTOMS:

Penile Numbness: Starting when I was 23 there were transient problems with the penis I would go for periods of time (weeks or months) with droopy erections and altered sensations but this was only a minor nuisance most of the time things worked well although even when things worked well I would loose feeling in the penis for about 1 hour after defecation. Then around May 2011 I began to experience transient extreme numbness in the penis but again it most of the time things were fine until April 2012 when things down there more or less became permanently numb...I have lost any ability to experience sexual pleasure as a result. While the penis is mostly numb there is occasional discomfort at the base of the penis. During the transient numbness phase I would repeatedly wake up with a full bladder and good penile sensation then when I would empty my bladder I would go numb again. Also again during the transient numbness phase I could regain sensation of the penis by paradoxically practising very frequent sexual activity then I would go numb again when I started to abstain...WEIRD.

Erectile Problems: There is occasional erectile dysfunction but most of the time things work well (although having an erect penis that is numb is about as useful as having a chocolate ashtray on my motorbike) at other times I have the reverse issue...it has trouble going down! Literally I can awake at night with a numb erection that can last for hours until I get up and walk around for a few minutes or empty my bladder. These priapism type erections started around may 2011 the same type as the onset of severe numbness symptoms.

Urination problems: I have suffered from frequent urination my whole life though in recent years it has flared up at times and I can awake 2 to 3 times at night to pass urine during these flare ups. There has occasionally been incomplete voiding issues but that happens very infrequently.

Defecation Issues: I cannot move my bowels unless I practise a precise relaxation technique...I have had this problem since I was 15. I can eat all the fibre and drink all the water in the world if I am stressed or nervous I simply never get the urge to go. I am also prone to rectal bleeding from what I assume are heamroids. There are also funny sensations around the rectal area but again I assume they are just hemmroids.

TESTING TO DATE:

MRI of Lumbar Spine: Negative for herniated disks or stenosis
Hormone Tests: Bioavailable Testosterone, Estradiol, Prolactin, DHEA, FSH, Progesterone, PSA all healthy
Ultrasound of Prostate, Bladder, Testicles: no issues except a hydrocele on one testicle
Urine test for infection: Negative
Physical exam by 2 Urologists revealed fibrosis on the penis (Peyronies Disease) which could be a possible cause of penile numbness.

TREATMENT TO DATE:
Antibiotics: No Improvement
Dopamine Agonists (if problems sue to brain chemistry): No Improvement
Pentoxifylline (400mg 2x daily) and Verapamil injections into the penile plaques (yes...OUCH!): significant reduction in penile plaques and SOME (and VERY slow) improvement in sensation (but nowhere near back to normal).

WHY DO I THINK ITS A PUDENDAL ISSUE?:
Process of elimination. What else could it be?

OTHER RELEVANT INFO:
Was circumsized at age 11 as I could not pull the skin back
Had appendix removed at age 18
I have a history of LOTS of bicycle riding BUT I stopped bike riding in 2010 about 1 year before the severe numbness problems started.

STEPS I AM TAKING WRT PUDENDAL ISSUES:
I have booked an appointment with a Pelvic Floor Specialist for an assessment.
I am going to ask my Urologist again for a referral to Dr. Gordon I asked him last time but he asked that I wait a few months after we finished the verapamil injections to see how things turned out and he said we could discuss that next time.
I have emailed several out of country doctors such as Dr. Aszmann and got a quote for surgery.

CONCERNS:
I know we are supposed to be patient but I am really scared that if I wait too long the nerve will go permanently kaput if its entrapped too long. I would feel a lot better if I knew I still had quite a bit of time. The reason why it has taken me so long to address PN issues is because once I got the Peyronies Disease diagnosis I was like HOORAY an answer and I totally immersed myself in treating that condition as it was a POSSIBLE cause of my penile numbness. I could jump into surgery or I could try conservative stuff first BUT keep in mind I have suffered from this for a while now and I am worried time is running out. Since I have been on pentoxifylline pleasure sensation has occasionally flickered on and off at different parts of the penis so I am sure many if not all of those pleasure nerves STILL work (something is just choking them out) but for how long? Dealing with this is hell and one of the reasons why I am posting here is to blow off steam...when I talk to friends and family about this they show very little empathy and just say things that make things worse...they scold me by lecturing me about people who are ALLEGEDLY worse off than me (in many cases I would trade places with the people described ex: My 50 year old uncle is dying of cancer! UGHH I would rather live to 50 with a good penis then die of cancer than live till 80 like this) they then scold me again when I discuss possible plans to spend money overseas for treatmen (that should be money for your retirement!) well I would rather starve at 75 and have a potentially good penis and sex life than be miserable but solvent till im 85. These same people themselves have spent thousands on back pain treatment overseas its as if spending money on pain problems yeah that s fine but as soon as you want to spend money to fix a sexual disability you are being irresponsible. Sorry for the rant would appreciate any feedback you guys have.

[Violet M]

Sounds like you are on the right track as far as getting a diagnosis. If it ends up being PN, you aren't the first PN patient who has brought up the subject of cancer vs. PNE. And you aren't alone in having friends and family be totally uncaring and not understanding. In the end you just have to brush their comments aside and pursue the treatments you know you need without feeling guilty because after all, you haven't robbed a bank or committed a crime. Tell them they should quit spending any money on anything that brings them pleasure -- no movies, no desert, no vacation, no eating out, etc. And they certainly had better not waste any time on sex themselves -- instead they should use their time and money helping out a worthy cause, otherwise they should feel guilty too.

There are Canadians who have gotten surgery paid for outside the country so if it came to that it would definitely be worth checking into whether you can get it paid for. But hopefully PT will help you and you will be able to avoid the surgery route.

Best,

Violet

[IHatePNE]

Thank you for the reply yes I have lurked this forum for a while and I have read that there are Canadians who have been sent to the states for surgery though I believe most of them mentioned Dr. Hibner (who no longer treats male patients). I would not mind seeing Dr. Filler for his imput though I don't know if he would have any surgical solutions for me since AFAIK he does not do Dorsal Serve Release surgery and though I am no doctor from all that I have read if my main symptom is penile numbness with no pain anywhere else in the pelvis it is probably the dorsal nerve that is the culprit.

[Violet M]

I guess I was just suggesting that since other people have gotten surgery paid for outside of Canada you might be able to too even if it's' Europe, not the US.

Violet

[snowmanman]

Hi I am a 35 year old male from Toronto, Canada who possibly suffers from Pudendal nerve issues. My issues involve numbness and severe sexual disability there is no pain...unless you count mental and emotional torment as pain.

SYMPTOMS:

Penile Numbness: Starting when I was 23 there were transient problems with the penis I would go for periods of time (weeks or months) with droopy erections and altered sensations but this was only a minor nuisance most of the time things worked well although even when things worked well I would loose feeling in the penis for about 1 hour after defecation. Then around May 2011 I began to experience transient extreme numbness in the penis but again it most of the time things were fine until April 2012 when things down there more or less became permanently numb...I have lost any ability to experience sexual pleasure as a result. While the penis is mostly numb there is occasional discomfort at the base of the penis. During the transient numbness phase I would repeatedly wake up with a full bladder and good penile sensation then when I would empty my bladder I would go numb again. Also again during the transient numbness phase I could regain sensation of the penis by paradoxically practising very frequent sexual activity then I would go numb again when I started to abstain...WEIRD.

Erectile Problems: There is occasional erectile dysfunction but most of the time things work well (although having an erect penis that is numb is about as useful as having a chocolate ashtray on my motorbike) at other times I have the reverse issue...it has trouble going down! Literally I can awake at night with a numb erection that can last for hours until I get up and walk around for a few minutes or empty my bladder. These priapism type erections started around may 2011 the same type as the onset of severe numbness symptoms.

Urination problems: I have suffered from frequent urination my whole life though in recent years it has flared up at times and I can awake 2 to 3 times at night to pass urine during these flare ups. There has occasionally been incomplete voiding issues but that happens very infrequently.

Defecation Issues: I cannot move my bowels unless I practise a precise relaxation technique...I have had this problem since I was 15. I can eat all the fibre and drink all the water in the world if I am stressed or nervous I simply never get the urge to go. I am also prone to rectal bleeding from what I assume are heamroids. There are also funny sensations around the rectal area but again I assume they are just hemmroids.

TESTING TO DATE:

MRI of Lumbar Spine: Negative for herniated disks or stenosis
Hormone Tests: Bioavailable Testosterone, Estradiol, Prolactin, DHEA, FSH, Progesterone, PSA all healthy
Ultrasound of Prostate, Bladder, Testicles: no issues except a hydrocele on one testicle
Urine test for infection: Negative
Physical exam by 2 Urologists revealed fibrosis on the penis (Peyronies Disease) which could be a possible cause of penile numbness.

TREATMENT TO DATE:
Antibiotics: No Improvement
Dopamine Agonists (if problems sue to brain chemistry): No Improvement
Pentoxifylline (400mg 2x daily) and Verapamil injections into the penile plaques (yes...OUCH!): significant reduction in penile plaques and SOME (and VERY slow) improvement in sensation (but nowhere near back to normal).

WHY DO I THINK ITS A PUDENDAL ISSUE?:
Process of elimination. What else could it be?

OTHER RELEVANT INFO:
Was circumsized at age 11 as I could not pull the skin back
Had appendix removed at age 18
I have a history of LOTS of bicycle riding BUT I stopped bike riding in 2010 about 1 year before the severe numbness problems started.

STEPS I AM TAKING WRT PUDENDAL ISSUES:
I have booked an appointment with a Pelvic Floor Specialist for an assessment.
I am going to ask my Urologist again for a referral to Dr. Gordon I asked him last time but he asked that I wait a few months after we finished the verapamil injections to see how things turned out and he said we could discuss that next time.
I have emailed several out of country doctors such as Dr. Aszmann and got a quote for surgery.

CONCERNS:
I know we are supposed to be patient but I am really scared that if I wait too long the nerve will go permanently kaput if its entrapped too long. I would feel a lot better if I knew I still had quite a bit of time. The reason why it has taken me so long to address PN issues is because once I got the Peyronies Disease diagnosis I was like HOORAY an answer and I totally immersed myself in treating that condition as it was a POSSIBLE cause of my penile numbness. I could jump into surgery or I could try conservative stuff first BUT keep in mind I have suffered from this for a while now and I am worried time is running out. Since I have been on pentoxifylline pleasure sensation has occasionally flickered on and off at different parts of the penis so I am sure many if not all of those pleasure nerves STILL work (something is just choking them out) but for how long? Dealing with this is hell and one of the reasons why I am posting here is to blow off steam...when I talk to friends and family about this they show very little empathy and just say things that make things worse...they scold me by lecturing me about people who are ALLEGEDLY worse off than me (in many cases I would trade places with the people described ex: My 50 year old uncle is dying of cancer! UGHH I would rather live to 50 with a good penis then die of cancer than live till 80 like this) they then scold me again when I discuss possible plans to spend money overseas for treatmen (that should be money for your retirement!) well I would rather starve at 75 and have a potentially good penis and sex life than be miserable but solvent till im 85. These same people themselves have spent thousands on back pain treatment overseas its as if spending money on pain problems yeah that s fine but as soon as you want to spend money to fix a sexual disability you are being irresponsible. Sorry for the rant would appreciate any feedback you guys have.

It seems my problem is similar to yours. I too have penile numbness as well as numbness in the scrotum. My numbness has not been transient though, it has been constant and unchanged. I'm only 23 years old and I've had this problem for almost a year now. It started when during a time I was driving for long hours daily in a very on comfortable car. The car was small and stick shift so I had to sit with my legs close together to change gears. This is the reason I believe my problem may be pudendal related.

I've seen general practitioners, urologists, and currently a neurologist. None of them seem to know what is going on. I've had x rays and MRIs of my spine and brain and everything has came back normal.

My neurologist is now testing my testosterone (again), but this time he is checking E2 levels and prolactin as well. I can't say I'm expecting this to show anything since my testosterone came back fine before.

I've mentioned the pudendal nerve to him before and he says hes heard of it, but he wants to do more of his own tests before he can conclude its that. I should probably see another neurologist, but I guess I just want to exhaust this doctor's tests before seeing another.

I've also wondered if it could be a neurotransmitter problem. Around the time this started I had been taking anxiety/depression supplements. SUPPLEMENTS, not prescription, which I know are known to cause sexual problems. Could it be I messed up a delicate balance of dopamine or serotonin in my brain from what I thought were harmless supplements? I don't know.

I'm thinking of trying to make an appointment with Dr. Filler and maybe try and get a 3T MRI too.

This is such a hard thing to diagnose. Most doctors are have never heard of these types of problems. I guess all I can do is to continue to see more doctors and explain this embarrassing problem to them.

[IHatePNE]

Hi Snowmanman I hope your are dealing with this mentally better than I am I can only imagine that at 23 the prospect of dealing with this long term must be very stressful. My numbness was transient until 2 years a go when it became almost constant as well with only small breaths of life here and there. If you are worried about this being a neurotransmitter issue you can talk to your doctor about Dopamine Agonist Therapy. This involves using drugs to correct problems with dopamine these drugs are used to help people who suffer from various forms of anhedonia (inability to experience pleasure including sexual pleasure). My GP put me on a Dopamine Agonist called Pramipexole and while it was an interesting drug to be on (it puts you in a pleasure seeking mood all the time though at times it also made me psychotically angry) it did nothing for me. If you are having trouble finding a doctor that is knowledgeable about dopamine agonist therapy and dopamine related sexual problems than you can visit Dr. Irwin Goldstein at San Diego Sexual Medicine as I believe that he has quite a bit of experience with Dopamine Agonist therapy. If you can please advise me of the tests you have been given it will give me ideas to bring up with my doctors I will of course reciprocate.

[scope]

Hi guys,

just wanted to add that I also have numbness issues in the penis and scrotum.

out of interest, do you guys sit for long periods?

[IHatePNE]

I myself don't sit for long periods no. The only lifestyle factors I have that I can think of are bicycle riding (which I stopped in 2010 1 year before symptoms really worsened) and the fact that I have a slightly crooked right foot and I do lots of walking...not sure if that would cause problems in the pelvis over time.

[Violet M]

I I have a slightly crooked right foot and I do lots of walking...not sure if that would cause problems in the pelvis over time.

Could possibly cause pelvic misalignment over time -- definitely worth checking out with a good PT if you haven't already.

Violet

[snowmanman]

Hi Snowmanman I hope your are dealing with this mentally better than I am I can only imagine that at 23 the prospect of dealing with this long term must be very stressful. My numbness was transient until 2 years a go when it became almost constant as well with only small breaths of life here and there. If you are worried about this being a neurotransmitter issue you can talk to your doctor about Dopamine Agonist Therapy. This involves using drugs to correct problems with dopamine these drugs are used to help people who suffer from various forms of anhedonia (inability to experience pleasure including sexual pleasure). My GP put me on a Dopamine Agonist called Pramipexole and while it was an interesting drug to be on (it puts you in a pleasure seeking mood all the time though at times it also made me psychotically angry) it did nothing for me. If you are having trouble finding a doctor that is knowledgeable about dopamine agonist therapy and dopamine related sexual problems than you can visit Dr. Irwin Goldstein at San Diego Sexual Medicine as I believe that he has quite a bit of experience with Dopamine Agonist therapy. If you can please advise me of the tests you have been given it will give me ideas to bring up with my doctors I will of course reciprocate.

Hey IHatePNE,

Sorry for taking so long to get back to you. You're right, this whole numbness situation really stresses me out. Although, I am thankful I don't experience the pain that most people with pudendal nerve problems experience.

Some of the tests I've had include: full MRI of head and spine, CAT scan of pelvic region, EMG/nerve test on legs, hormone panels, and X-rays of spine. My neurologist suspected multiple sclerosis, but now he has ruled that out.

If you don't mind, can you describe how your numbness feels? Is it a tingling numbness? Can you feel pain from a pinch? My numbness is more of a dulled sensation kind. No tingling and I can feel pain from a pinch. Just no touch sensation.

I am worried that this could be a neurotransmitter problem as well, but I know my doctor would be hesitant about putting me on a dopamine agonist. How did you convince your GP to put you on one or did he suggest it?

I recently got another testosterone test and my free testosterone came back a little low. It was just below the reference range, but my doc told me that it is probably nothing to worry about because my total testosterone was fine and my free testosterone was fine on my last test. I may get it checked again just to make sure.