Health Organization for Pudendal Education

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.

Welcome to the forum, Video.
This all sounds really difficult. But, you should absolutely not feel bad about anything you did that you think irritated it. There is no way to know what will and won't affect it, especially when you don't even know what it is! Also, what you described didn't really sound to me like something that could entrap a nerve. (Mine developed from a repeated and intense workout on a step machine over a few months, so it would seem surprising that a single (or even several) prods with a massage gun would cause that.)

It's great that you have a knowledgeable pt and have seen so many urologists. And it's also great that you have the video calls with Hibner and Conway coming up. It sounds like you are having muscle spasms, although I don't think you said that. Has your pt said that? The pain that you have the goes beyond your pelvis does sound a little different from pn, but that could be referred pain. But, I would definitely want to explore the possibility that it is a different nerve. I don't think you mentioned a diagnostic nerve block. That would be a good next step, I think, and I'd be sure to do it with imaging so they can be sure to hit the nerve with the numbing agent. An MRI with the potter protocol would also be useful, I think.

Let us know how your video appointments go.

April

Hello Video,

I can't say for sure if it's PNE but many of the symptoms you are describing sound familiar.

I was thinking the same thing April said -- that it might be helpful for diagnostic purposes to get a pudendal nerve block if the PN doctor recommends it. I would be interested to hear what Dr. Hibner and the other PN docs say.

I think it's too soon to decide on surgery because you don't have enough information yet. Surgery is typically only considered if you have nerve blocks that give you several hours of relief. And you would want to be pretty sure it's a nerve entrapment before you consider surgery. This article gives the typical criteria for determining if you have pudendal nerve entrapment:
https://www.pudendalhope.info/wp-conten ... iteria.pdf

Since you have tight pelvic floor muscles, Botox might be suggested by some doctors, but since the trigger point injections into the muscles didn't help, I would question the doctor as to why they think Botox would help when the trigger point injections didn't.

I understand how difficult this can be when you can't sleep. I had several months where I barely slept at all. Klonopin/clonazepam was extremely helpful in allowing me to sleep. It might be something your doctor would consider prescribing at least on a temporary basis while you are looking for the right treatments. It can be addicting though and might interact with duloxetine so check with your pharmacist/doctor on whether you could take it a few hours apart. Sometimes when I thought I would go crazy I would alternate sitting in hot and cold water. Hot for 2 minutes, cold for 30 seconds - alternating 4 times. You can get shallow tubs of water and put them on crates in the bathtub so you can keep adding hot water to the hot or ice to the cold tub. You can sit on a donut cushion in the water. I know it sounds overly simple but when nothing else helps, it might be worth a try. Hydrotherapy can be very healing because it brings fresh blood to the area and removes toxins. And it can calm the muscles down.

Violet

Hey April and Violet,

Thank you for taking the time to read and respond and for the information/advice. You both are very response on these boards, and it is much appreciated!

Yes, I do have many muscle spasms throughout my entire body really but especially the lower half. I only did one round of the trigger point injections on one side, and I haven't followed up with them yet as I honestly didn't really like the experience there. They recommend doing at least 6 rounds before you start to see any real benefits.

The telecom with Hibner went really well. He was super nice and knowledgeable. Took time to answer all of my question/concerns, etc.

He definitely suspects this is all just muscle spasm related and that there isn't any true entrapment/damage. Especially since Xanax will often calm my symptoms for a bit. He also mentioned that my "delayed" flares also point to muscle issues.

But it seems to me that after 2 months of pelvic floor physical therapy, I've been able to "relax" my pelvic floor quite a bit according to my PT. He said I'm not that hypertonic or spasming. I'm also not so sure my pelvic floor PT is very knowledgeable on nerve issues (I asked him to palpate the pudendal nerve to see if he could reproduce my pain symptoms, and he said the nerve is too deep to palpate!) Yet my symptoms remain. So need to find a new PT.

My symptoms are also bilateral, and Hibner mentioned true entrapment is almost always unilateral. I've already tried the gabapentin/valium/baclofen suppositories for weeks without any real relief. So I'm not sure what to make of all this in my case.

Hibner obviously would need to see for himself with all of the more conservative methods before even considering other issues/options. He's going to send valium/baclofen/ketamine suppositories. He wants to see how the ketamine helps. He's also suggesting an examination with his PT as well as the botox injections. This is obviously really expensive. And I do have concerns about my ability to sit and travel there without pain/discomfort/flares. And of course it's not guaranteed to help, but could be a useful step in the process.

Before making any decision on the botox option, I definitely want to explore some nerve blocks first. I'm worried there are multiple nerves at play. Specifically pudendal/iliolingual/genitofemoral.

I did see a a spine/pain doctor yesterday. He reviewed my MRIs and noted that my L4/L5 disc bulge is not trivial. He isn't quite sure how that exactly could be impacting nerves downstream, but due to my symptoms, he immediately recommended a ganglion impar block as a first diagnostic step to see if I have any relief. I have that scheduled for next Tuesday.

What's still strange to me is that my symptoms seem to be at their worst when I'm sleeping. I have to be very careful with how I sleep. I still haven't found the exact triggers yet. And they also sometimes get worse shortly after eating or when I feel my bowels shifting. So I'm going to schedule with a gastro doctor as well just to rule anything out there. I also have an EMG for my legs scheduled for Friday.

I'm beginning to suspect these issues might be more related to the lower spine causing some kind of cascade effect on nerves downstream.

Good luck with the ganglion impar block. I know it always makes you a little nervous going into something like that but it sounds like your life is pretty miserable right now and doing nothing isn't really an option for you. I hope the things you are trying will put you on the right track.

Violet

I highly doubt that there is any direct damage to pudendal nerve imposed by that massage tool. It rather aggravated your anxiety related to all these pelvic pain. Surely pudendal nerve plays one of the main roles in this havoc but might be not sole culprit. Muscle spasms might be very painful and the fact that you had positive effect from Xanax indicates this direction. Your pelvis is probably in neuromuscular havoc with multifactorial background. Though, pudendal block might be a step in right direction.

Violet - yes I am definitely nervous, and you’re right, I absolutely need relief and to help diagnosis this issues. My entire life right now is just trying to manage these issues.

April/Flyer - I’m really trying my best not to obsess about the stupid use of the percussive massage gun, but these guns are quite powerful. So I feel like it could have easily damaged or entrapped nerves with the excessive force/pressure. My symptoms definitely got worse in the following days. But no immediate pain on use. And no signs of damage/inflammation on 3T MRI. Would I have felt pain immediately if this did direct damage to a nerve?

My worst pain is always in the middle of the night. This is the symptom I don’t understand. During the day can be uncomfortable/painful, but it’s not until I lay down and fall asleep that I experience the excruciating burning pain. It seems like I should be at my most relaxed during this time. No anxiety or anything.

And my sphincter feels loose. So I don’t see how my pelvic floor is hypertonic or just spasming. This feels like damage. But again, I don’t know. I would like to see Hibner but sitting on a plane seems impossible. I can’t even make it 1 hour in a car while sitting on pillows.

Anyway, I am going to schedule pudendal nerve blocks as well. And then probably liliolingual/genitofemoral. I really just want to isolate the issues. I feel like physical therapy might be making things worse.

I’m also scheduled with a new pelvic floor PT for Monday that actually works with an urology clinic and sees all the complicated weird cases. She seems knowledgeable to hopefully I can get some more clear answers.

Thanks again for the replies.

So you say the pain is worse when you fall asleep. Does that mean you fall asleep and then the pain wakes you up?

I can think of two possible mechanisms for this but I'm not sure either of them would apply to you. I've just done some research on it myself because there have been times when I awaken in the night with burning pain in my spine ever since a chiro worked on my back. And there have been times in the past when pudendal symptoms woke me up at night. Anyway, one possibility I considered is that the supine position somehow puts pressure on the nerves. The other possibility is that neurotransmitters such as acetylcholine that can be affected especially by REM sleep and sometimes I have wondered if the neurotransmitters cause burning pain. It can cause blood vessels to dilate and muscles to contract so it could potentially affect your nerves. https://www.verywellhealth.com/acetylcholine-5187864
https://my.clevelandclinic.org/health/a ... holine-ach
But typically after I'm awake, get up, and move around for a few minutes the burning pain goes away. Does that work for you?

Physical therapy made me worse. I don't see any benefit in continuing it if it's making you worse. Hopefully your new PT will be able to help.

Violet

Hey Violet, thanks again for taking the time to share your help/info/wisdom.

Yes, this type of burning pain only seems to happen when I sleep, especially supine. It will wake me up. I’ve since started to sleep on my side with a pillow between my legs which seems to help. I’ve actually now had about three days in a row without much burning pain so I hope that’s a good sign. I have some itchiness at the moment, but that could be from opioids.

When I experience the burning/coldness, it’s usually front side from abdomen, pelvis, and down into the inner thighs. It does not really go away when I move around. A Xanax will often calm it down after a while.

I experience the most tingling sensations on my back thighs. Had an EMG on my legs on Friday. Preliminary report shows minor nerve damage. I’ve got a lot of leg and even body-wide muscle spasms. Will know more on Monday.

I do also often seem to flare up after eating. And when I feel my bowels moving. I’ll feel my abdomen lock up, and it’s like my entire body locks up and gets tight. Difficult to explain.

But recently I’ve had some regular good BMs so hopefully that’s a step in the right direction as well. Seein a gastro on Wednesday just to rule anything out there as well.

I really don’t know if any of this is truly PN related. I can’t easily reproduce any of my symptoms. So I’m not sure if one or multiple nerves are involved. The symptoms are all over the place.

The whole situation has been very strange and disturbing, and it’s obviously very difficult to get any concrete answers from doctors.

Really hoping the ganglion impar block provides some diagnostics. Maybe it really is mostly spine and musculoskeletal related? No idea.

Thanks again!

Hey Violet (or anyone!)

Sorry to bother again with wall of text! What should be expected on internal rectal pudendal palpitation test? So I had one today with the new pelvic floor PT.

She mentioned my pelvic floor was not particularly tight really. She said my reflex muscles seemed to be behaving normally.

She did the internal tests along the path of pudendal nerve, and it did not really reproduce my symptoms. It certainly was very uncomfortable and “painful” in the sense that she pressed hard and moved around, and it felt like a lot of uncomfortable intense pressure. Maybe an increase in numbness? But no real pain or specifically nerve pain.

Is this expected? I have no real baseline to know what is “normal”. I felt pressure and lots of discomfort but no nerve pain.

Is this a positive/negative test? Just not sure what to think about it. If anything, maybe I’m just so bilaterally damaged/compressed that it’s just numbness (but that doesn’t seem likely)? She was just as perplexed as I am.

Just wondering what should be expected from this test based on other’s experiences.

Thanks!