Possible PN and not sure what to do
Posted: Sat Dec 30, 2017 7:43 am
Hi,
I feel like I have pudendal neuralgia but I don't really know what else to do and everything I see about it gives me zero hope..
I know it's not like anyone here can diagnose me over the internet but just saying what's wrong feels like it will make me feel better, and I guess, contrary to what I just said, I'm holding out a sliver of hope something I say would rule it out..
It started (I think, I only later realized these events might be related) about 3 or 4 years ago, when I briefly had issues with urination feeling like I wasn't fully voiding. Around the same time I also would be having sex and be sort of prompted to ejaculate early by the sensation of what I thought was having to pee (looking back I think it was more similar to burning feelings I get now). Also I have had chronic constipation since a celiac disease diagnosis around 2012. It comes and goes but has been pretty constant for the last 10 or so months now and is pretty resistant to most fixes. With pills it seems to come regularly but I don't have to strain much anymore.
It resolved, and I stopped thinking about it. About 2 to 2 1/2 years ago my back began to gradually hurt, and eventually tightened up very badly one day. Since then it has never gotten better. I have gotten an MRI confirming a L4/L5 mild disc herniation. Repeated physical therapy did nothing to alleviate pain, but stopping weightlifting and minimizing exercise managed the pain effectively. About the same time as the back tightening up, I began to take extremely long to ejaculate, but only during sex. I also gradually began to have trouble maintaining an erection during these longer sexual experiences.
This lasted about 2 years. Minimal pain with occasional spikes when forced to crouch a lot, bend over, or tried to exercise. This past April, I began trying physical therapy for my back again. I started to perform squats. Around May, one day I noticed some pain in my left groin. I noticed goosebumps (which have never gone away) on the inside of my upper thighs, and my scrotum seemed "tight", almost like I was cold. Doing squats brought on some perineal pain so I stopped physical therapy. I began to get some burning pain when urinating. I would have intermittent "hard flaccid" penis (less common now) but often my penis will feel very cold to the touch.
I went to urgent care and a urologist, were checked for the normal causes and nothing was found. I started to have intermittent numbness on the left side of my penis, and alternating erectile dysfunction and premature ejaculation. Sitting a lot seemed to bring on that left groin pain, along where the leg meets the perineum. I very occasionally have right side pain as well. Pushing along my perineum I could (and can still) find tender areas, but nothing super painful. Sometimes it feels like the left pain radiates into my thigh but its hard to tell. I got a lot of burning discomfort urinating, in my bladder region and at the tip of my penis, and had urgency issues.
I found pudendal neuralgia as a possible cause on the internet and scheduled myself an appointment with a pain management specialist in PN here and while I was waiting the several month wait I made appointments with a pelvic floor PT. It seemed to help a little bit but not really. I apparently have decent strength or whatever it is they are looking for, but occasionally have some left obturator pain on the trigger point. Ejaculation was painful in my perineal area, and caused pain later on. Arousal could cause an odd almost quivering in my anus from time to time. I found if I minimized or cut out ejaculation (or even arousal at all) my pain would go down and I could sit pretty much as much as I wanted, including ~8 hour car trips, etc. By about 2 months ago the sexual issues had progressed to constant premature ejaculation issues - very little stimulation and I would feel like I was about to ejaculate, and stopping would cause me to lose my erection extremely quickly.
The specialist has given me a left obturator injection (did nothing) baclofen (did nothing) and a pudendal nerve injection. The nerve injection made my perineum and penis go numb (as its supposed to, I think?) but by a few hours later it started to hurt even worse than before and built up to pretty bad by 24 hours and lasted a few weeks. The urinary issues returned, including one instance where I woke up to pee in the middle of the night and afterwards had by far the most painful post urinary burning I've ever had - it felt like it was happening in a big cloud around my whole groin and lasted for a while. It scares me that this sort of pain might be constant in my future. I had had in the past (irregularly) a hot sensation move up my penis like I was peeing, except there was no liquid, and in this time period it happened constantly. After a few weeks these symptoms seemed to subside. I am not sure if it worked for the initial few hours - I wasn't aware I was supposed to be paying attention that soon (I was told it might not help for 24 hours) and I wasn't really feeling any serious pain at that time anyway.
Based on my reporting that the pudendal injection was no help, I was told I probably didn't have PN, but that it could be a sympathetic nervous system issue based on the weird hot liquid sensation. I get the distinct impression that my pelvic floor PT disagrees, though she hasn't said it out loud. I was prescribed rectal valium, which felt like it helped briefly, during which time I began sexual activity again, still with PE issues (sometimes it feels like moving wrong can cause ejaculation? is this PGAD? it doesn't really happen without being aroused/sexual contact, but it feels occasionally like I could ejaculate without even being fully erect yet) but minimal to no ejaculatory pain. The sitting pain has soon returned though (after a week probably), and occasionally now I feel a mild mild burning sensation in my perineum when sitting.
I have a ganglion injection next week (and have had occasional random mild tailbone pain). Past that, I don't know what the next step is or should be. I also don't know if the doctor knows, either. She seems kind of stumped to be honest.
When I did a bunch of physical therapy for my back, they would tell me I had issues with my SI joints (that's where most of my back pain is). I also would get random sciatica down into my right buttock and hamstring. I also had a very tight piriformis and very tight hamstrings. They'd work on those areas a lot but they'd never loosen up. I guess I am hoping these are the causes of my pain, and not symptoms.
I'm sure I'm leaving some things out, I'm just trying to cover everything, not even sure why I'm writing it all out. But I was feeling good for the first time in months when my doctor told me she was fairly sure it wasn't PN, until finally working up the courage to read the symptoms on here again and seeing way too many similarities, and none of the ones that rule it out, and feeling like even though she is a PN specialist she is wrong. I'm not seeing a ton of people suffering from the PE issue I have (unless its actually PGAD), but if anyone has anything that has worked for them in that area I'd love to hear it. I am having a lot of anxiety that I'll either start hurting a lot more soon or I will not be able to have a sexual relationship with anyone ever again.
I feel like I have pudendal neuralgia but I don't really know what else to do and everything I see about it gives me zero hope..
I know it's not like anyone here can diagnose me over the internet but just saying what's wrong feels like it will make me feel better, and I guess, contrary to what I just said, I'm holding out a sliver of hope something I say would rule it out..
It started (I think, I only later realized these events might be related) about 3 or 4 years ago, when I briefly had issues with urination feeling like I wasn't fully voiding. Around the same time I also would be having sex and be sort of prompted to ejaculate early by the sensation of what I thought was having to pee (looking back I think it was more similar to burning feelings I get now). Also I have had chronic constipation since a celiac disease diagnosis around 2012. It comes and goes but has been pretty constant for the last 10 or so months now and is pretty resistant to most fixes. With pills it seems to come regularly but I don't have to strain much anymore.
It resolved, and I stopped thinking about it. About 2 to 2 1/2 years ago my back began to gradually hurt, and eventually tightened up very badly one day. Since then it has never gotten better. I have gotten an MRI confirming a L4/L5 mild disc herniation. Repeated physical therapy did nothing to alleviate pain, but stopping weightlifting and minimizing exercise managed the pain effectively. About the same time as the back tightening up, I began to take extremely long to ejaculate, but only during sex. I also gradually began to have trouble maintaining an erection during these longer sexual experiences.
This lasted about 2 years. Minimal pain with occasional spikes when forced to crouch a lot, bend over, or tried to exercise. This past April, I began trying physical therapy for my back again. I started to perform squats. Around May, one day I noticed some pain in my left groin. I noticed goosebumps (which have never gone away) on the inside of my upper thighs, and my scrotum seemed "tight", almost like I was cold. Doing squats brought on some perineal pain so I stopped physical therapy. I began to get some burning pain when urinating. I would have intermittent "hard flaccid" penis (less common now) but often my penis will feel very cold to the touch.
I went to urgent care and a urologist, were checked for the normal causes and nothing was found. I started to have intermittent numbness on the left side of my penis, and alternating erectile dysfunction and premature ejaculation. Sitting a lot seemed to bring on that left groin pain, along where the leg meets the perineum. I very occasionally have right side pain as well. Pushing along my perineum I could (and can still) find tender areas, but nothing super painful. Sometimes it feels like the left pain radiates into my thigh but its hard to tell. I got a lot of burning discomfort urinating, in my bladder region and at the tip of my penis, and had urgency issues.
I found pudendal neuralgia as a possible cause on the internet and scheduled myself an appointment with a pain management specialist in PN here and while I was waiting the several month wait I made appointments with a pelvic floor PT. It seemed to help a little bit but not really. I apparently have decent strength or whatever it is they are looking for, but occasionally have some left obturator pain on the trigger point. Ejaculation was painful in my perineal area, and caused pain later on. Arousal could cause an odd almost quivering in my anus from time to time. I found if I minimized or cut out ejaculation (or even arousal at all) my pain would go down and I could sit pretty much as much as I wanted, including ~8 hour car trips, etc. By about 2 months ago the sexual issues had progressed to constant premature ejaculation issues - very little stimulation and I would feel like I was about to ejaculate, and stopping would cause me to lose my erection extremely quickly.
The specialist has given me a left obturator injection (did nothing) baclofen (did nothing) and a pudendal nerve injection. The nerve injection made my perineum and penis go numb (as its supposed to, I think?) but by a few hours later it started to hurt even worse than before and built up to pretty bad by 24 hours and lasted a few weeks. The urinary issues returned, including one instance where I woke up to pee in the middle of the night and afterwards had by far the most painful post urinary burning I've ever had - it felt like it was happening in a big cloud around my whole groin and lasted for a while. It scares me that this sort of pain might be constant in my future. I had had in the past (irregularly) a hot sensation move up my penis like I was peeing, except there was no liquid, and in this time period it happened constantly. After a few weeks these symptoms seemed to subside. I am not sure if it worked for the initial few hours - I wasn't aware I was supposed to be paying attention that soon (I was told it might not help for 24 hours) and I wasn't really feeling any serious pain at that time anyway.
Based on my reporting that the pudendal injection was no help, I was told I probably didn't have PN, but that it could be a sympathetic nervous system issue based on the weird hot liquid sensation. I get the distinct impression that my pelvic floor PT disagrees, though she hasn't said it out loud. I was prescribed rectal valium, which felt like it helped briefly, during which time I began sexual activity again, still with PE issues (sometimes it feels like moving wrong can cause ejaculation? is this PGAD? it doesn't really happen without being aroused/sexual contact, but it feels occasionally like I could ejaculate without even being fully erect yet) but minimal to no ejaculatory pain. The sitting pain has soon returned though (after a week probably), and occasionally now I feel a mild mild burning sensation in my perineum when sitting.
I have a ganglion injection next week (and have had occasional random mild tailbone pain). Past that, I don't know what the next step is or should be. I also don't know if the doctor knows, either. She seems kind of stumped to be honest.
When I did a bunch of physical therapy for my back, they would tell me I had issues with my SI joints (that's where most of my back pain is). I also would get random sciatica down into my right buttock and hamstring. I also had a very tight piriformis and very tight hamstrings. They'd work on those areas a lot but they'd never loosen up. I guess I am hoping these are the causes of my pain, and not symptoms.
I'm sure I'm leaving some things out, I'm just trying to cover everything, not even sure why I'm writing it all out. But I was feeling good for the first time in months when my doctor told me she was fairly sure it wasn't PN, until finally working up the courage to read the symptoms on here again and seeing way too many similarities, and none of the ones that rule it out, and feeling like even though she is a PN specialist she is wrong. I'm not seeing a ton of people suffering from the PE issue I have (unless its actually PGAD), but if anyone has anything that has worked for them in that area I'd love to hear it. I am having a lot of anxiety that I'll either start hurting a lot more soon or I will not be able to have a sexual relationship with anyone ever again.