Young male with terrible sexual/urinary issues. PNE?
Posted: Sat Dec 16, 2017 7:05 am
Hello all. 28 year old male here. I have been having issues for about a year now with not many answers. I will try to explain all of my symptoms the best that I can.
Sexual:
PGAD that is on and off. It has progressively been being more "on" than "off" over time. It will be triggered by something, usually a random sexual thought or something I see. It is never triggered by physical movement. Then I will feel like the only way to get relief is to orgasm. I'll do this, but then I won't feel relieved at all afterwards, with the urge to keep going. As a male, this is really difficult. It feels like the orgasm didn't "finish" and I get an extreme blue balls feeling. The orgasm itself feels very strange. Not bad, but not good.. just weird. Semen comes out and there is no blood or pain. It has gotten to the point where I have to bring myself to orgasm up to 10 times to finally get relief from this strange PGAD feeling, which is extremely exhausting. If I don't get relief, the feeling is so horribly uncomfortable (just feels like urethral burning and something stuck way up my urethra, extreme congested feeling in penis and testicles, with scrotal tenderness and just a general uneasy feeling) that I cannot sleep or focus on anything, even with the help of pain medication, or any medication for that matter. Once I get relief, I am fine until I get that weird urge again. It's like an uncomfortable arousal. It's a never-ending cycle and it is absolute hell.
Urinary:
Very similar to the sexual, in the sense that I will finish peeing but afterwards feel very unrelieved and feel as if I have to keep urinating for relief, but nothing comes out. It feels like there is urine stuck in my urethra. At times I will stand at the toilet straining for extended periods of time until the weird feeling goes away. If I don't attempt to relieve it, it's similar to the PGAD but not as bad. Just a really weird tight feeling in my urethra and scrotal area in general. More pronounced on the right side. Still very bothersome to the point where it is difficult to sleep or focus on anything. I end up taking multiple trips to the bathroom to pee very small amounts, until the feeling randomly goes away. Generally speaking, I urinate more frequently than normal and my streams are weak.
History:
Starting about 3 years ago (Summer of 2014) I started having this very strange issues sleeping. I would have random nights where my body just wouldn't shut down, and my body would twitch heavily right when I was falling asleep, over and over again throughout the night. I wouldn't sleep for a minute. During this time, I would have to urinate every 20 minutes, sweat profusely, and just have a really weird "hyper awakeness". It felt like my nervous system was on overdrive or something. It didn't seem like there was anything that triggered this. I've never been a nervous type of person. No anxiety issues ever. I was 100% healthy before any of this started happening. Exercise 3x a week on average and eat healthy foods consistently. This sleep thing was happening on average 1-2 nights a week all the way up until January of 2017:
Around fall of 2016, I started noticing that sexual sensation was a bit different and my orgasms were just different. It still felt good, just different. Sometimes, I would find myself occasionally having to orgasm twice for complete relief. No big deal, never bothered me. Also noticed that my urine streams were weird and would constantly fork all over the place. Again, never thought anything of it. Then in January 2017 I started realizing that sometimes when I had an orgasm it just did not feel good. Like it just a half assed orgasm. This is when I did start freaking out and thinking what the hell is this crap and what's going on. I ended up having to bring myself to orgasm up to 5 times before finally getting relief when I realized that something was not right. I started my journey with the unreliable medical industry and really have not made much progress up to today.
After way too many tests and MRIs, we concluded that I have zero urological or infectious issues. We found tarlov cysts at my S2 level (4 of them with an ectatic spinal sac cyst). After much self-research and assuming this was the cause of my problem, I had these cysts repaired by Dr. Frank Feigenbaum in Dallas, TX. The surgery was a success, but gave no relief of symptoms. It only made my urinary issues worse. This surgery was done in July of this year. Ever since then, my symptoms have only slowly progressively gotten worse. After seeing more doctors, we discovered I had two inguinal hernias (one on each side). This gave me hope that it could be the problem. Had surgery to remove these with zero results. Back to square one.
I saw a pelvic floor physical therapist just today and diagnosed that all of my pelvic floor muscles are extremely tight and in constant spasm. But what is causing this? I will try the physical therapy route but I don't have much hope for it. It just feels like there is something out of place when I urinate or ejaculate.
Here is the final kicker: I have ZERO pain! I classify this as any sharp pain, ache, or burning feeling. I don't have any of this. When the PGAD like thing flares up I have mild urethral burning but that's it. It's mostly just a terrible uncomfortable uneasy feeling, but I wouldn't call it pain. Could I? I currently cannot work or really function normally due to my issues. Normally I'm a very ambitious person who likes to work a lot. I just got my CPA license and I can't even use it. I worked through the crap all the way up to the past month or so and I couldn't take it anymore. I've just been laying around mooching off my family and searching for answers. I need my life back.
After so much of this the only thing that I think it could be now is some type of nerve entrapment. Could it be the pudendal nerve? I read around online and on this forum and thought maybe it could be some strange congenital deformity where the nerve is being compressed by a piece of muscle or bone. Something that I was born with, but didn't show symptoms until recently. The only concern I have is that I don't have any pain. Is it possible to have PNE without pain, but with my other symptoms?
I have an appointment with a musculoskeletal doctor at the Cleveland Clinic who specializes in nerve entrapment, but that is not until January 26th. I don't know if I can wait that long - I am beginning to lose my mind and close to complete exhaustion from the constant orgasms and urinary straining.
Here is a list of all other symptoms I am having along with the sexual and urinary stuff.
1. Constant high pitched ringing in the ears. Bilateral. Went to both an audiologist and ENT to confirm it was nothing up there.
2. Random numbness in my feet that usually comes for about 10 to 15 seconds then goes away, usually while laying down, but can happen otherwise. Mostly happens on right foot.
3. The head of my penis is discolored on the right side. It looks as if it's not getting enough blood flow or something.
4. I have mild scoliosis. My pelvis is slightly misaligned, but not enough to cause any issues, according to chiropractors.
5. I constantly get the urge to sneeze but have difficulty finishing the sneeze. I'll build up the "ahhh" part but won't finish. It's really unrelieving and will feel a little uneasy for about 20 minutes after that happens. Very annoying. Sometimes I can finish the sneeze, and when I do, my whole body aches for a few seconds. Only sometimes though. I don't have any allergies.
6. Sometimes I'll yawn and it'l be like a half-yawn. Like it'l just stop midway through. I'll end up yawning multiple times in a row. It's really weird.
7. Sometimes I get this really weird tenderness on the right side of my neck and mild headache back of head right side. This is not bothersome, just noticable.
8. When I poop, if I'm in the middle of the horrible PGAD episodes, I get a little bit of relief sitting on the toilet. It returns immediately once I get up.
9. Sitting, standing, or laying down does not seem to make any difference of symptoms.
10. Sometimes the strange uncomfortable arousal will be triggered by me getting really mad at something. This really makes no sense to me.
Well, there's my story. Any input would be much appreciated. Determined to get my life back; I really don't want things to take a turn for the worst.
Sexual:
PGAD that is on and off. It has progressively been being more "on" than "off" over time. It will be triggered by something, usually a random sexual thought or something I see. It is never triggered by physical movement. Then I will feel like the only way to get relief is to orgasm. I'll do this, but then I won't feel relieved at all afterwards, with the urge to keep going. As a male, this is really difficult. It feels like the orgasm didn't "finish" and I get an extreme blue balls feeling. The orgasm itself feels very strange. Not bad, but not good.. just weird. Semen comes out and there is no blood or pain. It has gotten to the point where I have to bring myself to orgasm up to 10 times to finally get relief from this strange PGAD feeling, which is extremely exhausting. If I don't get relief, the feeling is so horribly uncomfortable (just feels like urethral burning and something stuck way up my urethra, extreme congested feeling in penis and testicles, with scrotal tenderness and just a general uneasy feeling) that I cannot sleep or focus on anything, even with the help of pain medication, or any medication for that matter. Once I get relief, I am fine until I get that weird urge again. It's like an uncomfortable arousal. It's a never-ending cycle and it is absolute hell.
Urinary:
Very similar to the sexual, in the sense that I will finish peeing but afterwards feel very unrelieved and feel as if I have to keep urinating for relief, but nothing comes out. It feels like there is urine stuck in my urethra. At times I will stand at the toilet straining for extended periods of time until the weird feeling goes away. If I don't attempt to relieve it, it's similar to the PGAD but not as bad. Just a really weird tight feeling in my urethra and scrotal area in general. More pronounced on the right side. Still very bothersome to the point where it is difficult to sleep or focus on anything. I end up taking multiple trips to the bathroom to pee very small amounts, until the feeling randomly goes away. Generally speaking, I urinate more frequently than normal and my streams are weak.
History:
Starting about 3 years ago (Summer of 2014) I started having this very strange issues sleeping. I would have random nights where my body just wouldn't shut down, and my body would twitch heavily right when I was falling asleep, over and over again throughout the night. I wouldn't sleep for a minute. During this time, I would have to urinate every 20 minutes, sweat profusely, and just have a really weird "hyper awakeness". It felt like my nervous system was on overdrive or something. It didn't seem like there was anything that triggered this. I've never been a nervous type of person. No anxiety issues ever. I was 100% healthy before any of this started happening. Exercise 3x a week on average and eat healthy foods consistently. This sleep thing was happening on average 1-2 nights a week all the way up until January of 2017:
Around fall of 2016, I started noticing that sexual sensation was a bit different and my orgasms were just different. It still felt good, just different. Sometimes, I would find myself occasionally having to orgasm twice for complete relief. No big deal, never bothered me. Also noticed that my urine streams were weird and would constantly fork all over the place. Again, never thought anything of it. Then in January 2017 I started realizing that sometimes when I had an orgasm it just did not feel good. Like it just a half assed orgasm. This is when I did start freaking out and thinking what the hell is this crap and what's going on. I ended up having to bring myself to orgasm up to 5 times before finally getting relief when I realized that something was not right. I started my journey with the unreliable medical industry and really have not made much progress up to today.
After way too many tests and MRIs, we concluded that I have zero urological or infectious issues. We found tarlov cysts at my S2 level (4 of them with an ectatic spinal sac cyst). After much self-research and assuming this was the cause of my problem, I had these cysts repaired by Dr. Frank Feigenbaum in Dallas, TX. The surgery was a success, but gave no relief of symptoms. It only made my urinary issues worse. This surgery was done in July of this year. Ever since then, my symptoms have only slowly progressively gotten worse. After seeing more doctors, we discovered I had two inguinal hernias (one on each side). This gave me hope that it could be the problem. Had surgery to remove these with zero results. Back to square one.
I saw a pelvic floor physical therapist just today and diagnosed that all of my pelvic floor muscles are extremely tight and in constant spasm. But what is causing this? I will try the physical therapy route but I don't have much hope for it. It just feels like there is something out of place when I urinate or ejaculate.
Here is the final kicker: I have ZERO pain! I classify this as any sharp pain, ache, or burning feeling. I don't have any of this. When the PGAD like thing flares up I have mild urethral burning but that's it. It's mostly just a terrible uncomfortable uneasy feeling, but I wouldn't call it pain. Could I? I currently cannot work or really function normally due to my issues. Normally I'm a very ambitious person who likes to work a lot. I just got my CPA license and I can't even use it. I worked through the crap all the way up to the past month or so and I couldn't take it anymore. I've just been laying around mooching off my family and searching for answers. I need my life back.
After so much of this the only thing that I think it could be now is some type of nerve entrapment. Could it be the pudendal nerve? I read around online and on this forum and thought maybe it could be some strange congenital deformity where the nerve is being compressed by a piece of muscle or bone. Something that I was born with, but didn't show symptoms until recently. The only concern I have is that I don't have any pain. Is it possible to have PNE without pain, but with my other symptoms?
I have an appointment with a musculoskeletal doctor at the Cleveland Clinic who specializes in nerve entrapment, but that is not until January 26th. I don't know if I can wait that long - I am beginning to lose my mind and close to complete exhaustion from the constant orgasms and urinary straining.
Here is a list of all other symptoms I am having along with the sexual and urinary stuff.
1. Constant high pitched ringing in the ears. Bilateral. Went to both an audiologist and ENT to confirm it was nothing up there.
2. Random numbness in my feet that usually comes for about 10 to 15 seconds then goes away, usually while laying down, but can happen otherwise. Mostly happens on right foot.
3. The head of my penis is discolored on the right side. It looks as if it's not getting enough blood flow or something.
4. I have mild scoliosis. My pelvis is slightly misaligned, but not enough to cause any issues, according to chiropractors.
5. I constantly get the urge to sneeze but have difficulty finishing the sneeze. I'll build up the "ahhh" part but won't finish. It's really unrelieving and will feel a little uneasy for about 20 minutes after that happens. Very annoying. Sometimes I can finish the sneeze, and when I do, my whole body aches for a few seconds. Only sometimes though. I don't have any allergies.
6. Sometimes I'll yawn and it'l be like a half-yawn. Like it'l just stop midway through. I'll end up yawning multiple times in a row. It's really weird.
7. Sometimes I get this really weird tenderness on the right side of my neck and mild headache back of head right side. This is not bothersome, just noticable.
8. When I poop, if I'm in the middle of the horrible PGAD episodes, I get a little bit of relief sitting on the toilet. It returns immediately once I get up.
9. Sitting, standing, or laying down does not seem to make any difference of symptoms.
10. Sometimes the strange uncomfortable arousal will be triggered by me getting really mad at something. This really makes no sense to me.
Well, there's my story. Any input would be much appreciated. Determined to get my life back; I really don't want things to take a turn for the worst.
