Hey all,I’ve been reading these boards for the past month, and it has been extremely helpful. Thank you all for being so open and sharing your stories and advice. It’s enabled me to help to navigate this condition where the medical field has failed me.
My own situation is completely humiliating to me. This isn’t all of the specific details. Just broad strokes. It’s long and embarrassing. For those that read it, I greatly appreciate it.
I’m a 35 year old male. I’ve suffered with erectile dysfunction issues seemingly out of nowhere since I was 31. Pills never seemed to work either. Slowly overtime, I seemed to have lost sensitivity as well. Everything just got worse, and I began to obsess over it out of distress.
I got really sick last November. Coughing for an entire week. One day when I got up, I noticed my penis was hard and constricted while in a flaccid state. It would kind of fluctuate for the next month. Something just didn’t feel right. But I continued to try to masturbate, and then one day in January, it became more stuck in that hardened rubbery state. I developed what I now know as “hard flaccid”.
Around this same time I started to notice very vague pain/discomfort/heaviness in pelvis. The hard flaccid state is extremely uncomfortable. My pelvis felt “locked up”. And my perineum felt like it was going to fall out. Like there was so much pressure. I was having these really uncomfortable flare-ups with a pulling sensation as well as some light tingling and tons of doom anxiety. I lost a lot of sensation in my penis and pretty much developed full erectile dysfunction. I went to the ER twice without much help. They ran a CT scan that showed nothing. I stopped masturbating.
I began seeing a pelvic floor physical therapist. My pelvic floor was hypertonic. I got some minor relief, but it didn’t seem to be helping a whole lot. Did cupping, dry needling, trigger points, etc. I didn’t really have specific areas of tenderness.
Then one day I did something extremely stupid. My pelvic floor felt congested. So I used a percussive massage gun around my legs and groin and then eventually I used it on my perineum. I was desperate for some relief and wasn’t thinking. I just wanted to loosen up the muscles. But I think I pressed too hard and too long with improper setting (it was still low). I felt absolutely no pain at the time. A few hours later, I had a bad flare up, but this wasn’t out of the ordinary. But I think this is where I really did some permanent damage and I’m having a hard time forgiving myself for being so stupid.
The next day I saw a urologist to do a Doppler ultrasound for erectile function. My blood flow was fine (although my glans and spongiosum did not inflate). The erection felt very strange. I had a split second of a dull ache in my perineum. And it was like my penis was shot with novocaine. But I no longer felt much discomfort in my pelvis.
The day after, I actually had a really good day. No discomfort. And I felt relatively normal.
The following day, I slowly began to notice more of a warm tingling sensation during involuntary kegels. These slowly became more intense (I would later learn this is kind of like PGAD).
It got worse and worse. I was cold and shaking with anicety until I finally fell asleep and then woke up with a burning pain in my abdomen, pelvis, and thighs. I went to the ER in intense pain. When I got there, it slowly subsided. They tested me for testicular torsion which was negative, and sent me off with a prescription for Xanax and gabapentin.
For the next month or so I would have these flare-ups, and they would often subside with Xanax. Or just on their own. Sometimes in the middle of the night I would have these ripping pains through my perineum. But I was mostly able to sleep. And I had no sitting pain. Just maybe some discomfort, but I’ve had the discomfort for a while.
I saw about 5 different urologists during this time. And one neurologist. None of which were helpful. I also began seeing a sports chiro physical therapist. I explained my symptoms, and the immediately ordered MRIs to rule out cauda equina.
I had a 3T MRI of my pelvis and lumbar spine. I have a disc bulge on L4/L5 impacting L4 nerves. Some gluteal edema, but overall unremarkable. Negative for cauda equina.
I had the Dallas radiologist Avneesh Chabbra examine the MRIs. He is apparently skilled in reviewing neuromuscular pelvic issues and PN. He said all my nerves look fine. He said it's probably just muscle spasms and to continue PT. He also strongly advised against surgery.
Over the past couple of weeks, I began to develop pain when sitting. Sometimes it’s just tingling. Sometimes it’s intense burning. And sometimes it’s like PGAD. During this whole time I also developed constipation (with thin stools). I have lots of urinary hesitancy, but no burning pain on urination. Sometimes I have urgency issues or trouble fully emptying, but most of the time it’s ok. The issue seems mostly with bowels. It’s like I am unable to evacuate at all.
I also went to Pelvic Rehab Medicine. I didn’t really have any specific pain during internal exam. But they still diagnosed hypertonic PF and pudendal neuralgia. They gave me Valium/baclofen/gabapentin suppositories. And I’ve done one round of their trigger point injections. None of these seemed to really work to provide much noticeable relief.
My pelvic floor PT says my pelvic floor is much more relaxed. However, I still feel the pain and tingles. And it seems to be gettig worse. I had to take extended time off of work. Managing this condition is all I can do or think about.
The strange thing is it’s now severely disturbing my sleep. I often wake up in the middle of the night in severe icy hot pain in my abdomen down to my thighs. Nothing subsides when I lay down. I can’t get comfortable at all. It’s almost constant tingling burning pain in the perineum and glutes and testicles and down my thighs. My penis is basically numb, but I do still sometimes get nocturnal erections on daily cialis. I’m also on lyrica and cymbalta, and it does nothing. I’m always uncomfortable no matter what I do. Every movement is extreme discomfort or pain.
I don’t know when this happened, but I also seem to have lost my cremaster reflex in my testicles. My penis feels extremely weird and rubbery. Every now and then it will relax slightly or engorge, and I feel better. This is happening less and less. I used to be able to sometimes masturbate, even after my stupid injury, but orgasms were very muted and my pelvic floor would burst into spasms. I have absolutely no libido anymore. Or anymore life force it seems. I get no enjoyment out of anything. I just want to feel normal.
I’m scheduled to do a telecom with Dr Hibner on Monday. I want to do the Potter MRIs as well. I’ve also scheduled calls with Dr Conway and Dr Irwin Goldstein.
But I have no idea how I’m going to travel with this condition. My life has been pure misery and absolute hell.
I’m continuing with pelvic floor physical therapy and sports chiro therapy without much improvement. The chiro place also suggested MLS laser therapy in the area, and I did one round out of desperation for some relief, but I fear it made things worse. I can’t find help, and I just keep making things worse and destroying my body it seems. It’s been almost 2 months since this whole thing started. I want to tackle it as quick as possible.
Just looking for some guidance and thoughts because I feel so alone and don’t know what to do. Does this sound like PNE? Should I consider the surgery? Or does this maybe sound like another nerve or multiple nerves or just PN and/or muscle spasm irritations? I’m terrified I’m permanently damaged for life. My life has been severely altered, and it’s devastating. I feel like a complete fool.
Thanks for reading this far.
