Young male with terrible sexual/urinary issues. PNE?

[Allan T]

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.

[Joelle7979]

I do wish u luck, but find a pt that knows about PN.

[Allan T]

Hey, thanks for the reply. I have tried many medications including lexapro and nothing helps. Lexapro just made my sexual symptoms worse, not to mention just made me feel like crap in general. I don't have any pain. It's just issues with urinating and ejaculating. I don't think there is any med that can help with this. I think there is a nerve issue that caused my muscles to be tight, not the other way around. Or the constant sexual and urinary straining made the muscles tight. I will try PT at home but I won't expect much. The PT I saw was familiar with PGAD and PN and said it could be caused by tight muscles, but recommended I find another doctor to help with that. I did, but appt is not until January 26th. It is hell waiting.

[Violet M]

Hi Allan,

I went through a phase of PN where I had no pain, just PGAD. Dr. Echenberg considers PGAD to be a pain syndrome. It is certainly a very uncomfortable feeling and to me it was worse than pain. Later on I developed urinary symptoms. So, Lexapro didn't work for you. What about tricyclic antidepressants? Elavil can be effective for urinary symptoms so you might want to try it if you haven't already. Another option is buprenorphine. I have a friend with PGAD and it has been effective in taking those symptoms away.

Have you tried something like ambien, xanax, soma, or clonazepam to help you sleep? You said you have shocks that wake you up. Clonazepam has some anti-seizure properties so may help eliminate or dampen those. I'm not suggesting meds as a permanent solution -- just as a way of getting you through this until you can find the underlying cause and work on that.

I noticed you said you exercise 3 times a week. What type of exercise are you doing? It could be a contributing factor to your tight pelvic floor.
In my case I had a nerve issue that caused the pelvic floor to be tight and it was triggered by exercise. I also had more pronounced symptoms on one side than the other. That is one of the Nantes criteria for determining if you have a nerve entrapment. http://www.pudendalhope.info/sites/defa ... iteria.pdf

I think it makes sense to go ahead and at least give PT a try. You don't have much to lose at this point it sounds like. I'm sorry this is affecting your life so badly and I understand completely because I went through it too.

Have you seen a neurologist and have you had a brain MRI? Just the fact that you are having more global symptoms than just pelvic symptoms seems like maybe you should have some further testing to rule out other things like MS, lyme's disease, etc. if you haven't already. Just trying to brain storm some other things to consider.

Violet

[Allan T]

Hi Violet,

Thanks for the reply. I really don't like medication in general so I've been avoiding it if I can. Everything I've tried so far has just made things harder. I was prescribed Gabapentin by my last urologist visit but haven't even tried it after googling the side effects. He even said he didn't have much hope for it.

About the exercise, I'll just clarify that I haven't done any exercise in about 2-3 months, but when I was doing 3 days a week, it was a little bit of everything. Weightlifting, running, leg press, core workouts. I do believe that this contributed to my pelvic floor issues and triggered the nerve stuff. My symptoms are more pronounced on the right side.

I did see a neurologist and also an ENT who got me a brain MRI which was all clear. I've gotten several MRIs of the sacrum and one of lumbar but nothing stands out. It was only the tarlov cysts.

[Violet M]

Hi Allan,

Well, if you are lucky now that you have quit exercising maybe the nerves will heal. I waited probably at least a year after exercising before trying PNE surgery but it wasn't getting any better so I went ahead with surgery since nothing else seemed to be working. For some people, just life-style changes help but it takes time because nerves heal so slowly. Hopefully PT will help you too.

I tried gabapentin but it didn't help the symptoms and I didn't like the side effects. I only got up to 900 mg though which is a really low dose but it made me really loopy.

What about pelvic MRI or lumbosacral plexus? Do you know if your other MRI's covered those areas? I just wondered if there might be any thickening of pelvic ligaments. One of our former directors had PGAD with thickened ligaments after weight-lifting. Last I heard she was basically cured and moved on with her life. So with her story and my story I think there is hope for you.

Violet

[Allan T]

I am very convinced that simply quitting exercise or any lifestyle changes will not cure me. I know my body in and out and this has only gotten progressively worse over time. It just feels like there is some physical issue somewhere in my pelvis. Someone just needs to look in the right place with the right tools/equipment. PT honestly feels like a joke - it's just breathing exercises and stretching.. I feel like an idiot when I do them and it does not make me feel any better.

My MRIs did cover the pelvis and lumbosacral areas. I don't know what type of MRIs they were though, so maybe I need to have more ordered. I don't plan on trying the Gabapentin.

[Violet M]

Isn't the PT doing any internal work via the rectum? Typically they will assess whether you have a tight pelvic floor and if so try to relieve the tension and if you have tight muscles they will try to work on the trigger points. Also, they should be able to assess whether you have any pain along the course of the nerve -- specifically if they press at the ischial spine or along the course of the nerve in Alcock's canal just for diagnostic purposes. But I understand why you feel like PT isn't going to help. It did not help me until after I got PNE surgery. Are you to the point yet where you want to go see a PN specialist?

Violet

[Allan T]

The PT did the evaluation via the rectum but did not do anything with trigger points, I don't think. She showed me the Biometric tool thing that showed how much my muscles were in spasm. So I do have a very tight pelvic floor. For PN specialists, I have spent the past couple days calling various doctors listed on this website. I've made progress with Dr. Marvel in Maryland and Dr. Conway in NH. I submitted an appointment request with the guy in Santa Monica, CA, forget his name. The PT just gave me stretches and breathing exercises to do at home. Also, after the initial PT appointment that involved stretches, my pelvic area was pretty sore for a couple days. Symptoms did not improve.

[Violet M]

Allan, you might want to do searches on these physician's names using the search bar in the upper right of the forum page and read what other patients have said.

Violet