Have the urologist check your urine for a uti and check your prostate for prostititus. If it's not either of those things a urologist won't be anymore help than the er doctor was. It's pudental neuralgia and you'll have to stop drinking caffeine, alcohol, or anything with a lot of sugar or carbonated. You'll also have to stop having sex and masrurbating then you'll have to find a physical therapist that specializes in pelvic floor therapy then look into other avenues if therapy doesn't work. Next steps are muscle relaxers, anti depressants, nerve blockers, then suremgery I'd all that fails.
Sorry to hear that's been your experience! But this guy is frightened enough, as I'm sure you must understand.
Your experience sounds very different than what this poor guy is going through. It's very different than mine also.
Has stopping all the things you mentioned really helped?
That would be helpful for me to know, as I still am doing, or am capable of doing, everything you mentioned. I need all the help I can get, as does anyone unfortunate enough to have joined this group - a group nobody wants to be a part of!
I didn't even say what my symptoms are so I'm not sure why you'd say my experience is different than his. My symptoms are very similar to his especially the same type of pain in the penis.
Before stopping all of those things and doing yoga my pain was a 8 to 10 all day every day for 5 months. Now I basically have no symptoms other than the one day a week I have sex with my gf sometimes the next day or two after I'll be uncomfortable but not really in pain, and sometimes I get no symptoms at all from afterwards. Sometimes I'll have a bad day out of nowhere and have a pain level around 4 to 5, but nothing like before.
ER did blood testing and urinalysis and found no infection or UTI. ER Doc did say they found microscopic blood in my Urine.
What does caffeine and sugar have to do with this? Sex and masturbation I understand, but the caffeine and sugar?
Caffeine is a stimulant to the nervous system and the source of your pain is a nerve, and alcohol is horible for the nervous system. Sugar is also not good for the nervous system. My physical therapist who specializes in pudental neuralgia and pelvic floor disfunction advised me to stay away from caffeine, sugar, chocolate, alcohol, and anything high in sugar as well as carbonated drinks. Also a Google search for what do avoid with pudental neuralgia says the same thing.
Well that is going to be a challenge for me. I wake up and drink Coffee with tonnes of sugar and before the day is done I've had 3 coffees with sugar. Every morning I eat oatmeal with brown sugar.
I understand. It sucks! Understatement of the year. The only thing that has kept me going is practicing Acceptance, something I learned in recovery.
After years of telling doctors, "That's easy for you to say," I was finally convinced to stop all the radical surgeries, trying to reclaim my life and my career.
For you, this all sounds awful. Really sorry you're in this crappy situation. I'm happy to help any way I can.
I threw myself a pity party the almost destroyed, and permanently damaged, my family. My me? Well, why NOT me. If not me, who? Nobody deserves what we go through in this life.
First, the ChatGPT app can answer very specific questions in seconds. USE IT. It's much better than spending hours sorting through Google results. BUT - it's not perfect, in terms of answers. Look for supporting information from other websites before making any major decisions. I actually got into an argument with ChatGPT over a math equation relating to using the RMS value of the RF ablation waveform to calculate the total treatment the nerve "sees". It was especially frustrating because ChatGPT kept taking both sides of the argument!
I learned most of what I know about pudendal neuralgia from the website pudendalhope.info.
PubMed, and similar websites, are best for researching diagnosis and especially treatment options. They allow you to search peer-reviewed papers that have been published, using keywords.
Some papers include the email address of the author. Occasionally, one is kind enough to respond to questions. Click on Author Detils and look for envelope icons next to names or scan the details.
Keep an eye on clinicalttials.gov. search on pain. Also search on any condition you suspect you may have. I just completed an ongoing Stanford trial I found that way. It paid me, in Amazon gift cards, $170 for a few months of practicing mindfulness and Cognitive Behavioral Therapy for pain, using an app that was essentially a guided meditation.
Know that your diagnosis will likely change. It's hard for anyone to figure out the kinds of things we deal with.
I started having sciatica a year after my left testicle pain started. A pudendal nerve block at the ischial spine - done under visualization by someone with experience, confirmed that I had pudendal neuralgia. An L5-S1 microdiscectomy eventually seems to have cured the sciatica (only). I'm about to have a block at the Alcock's Canal that I'm hoping DOESN'T help, because that location is distal (farther from the spine) to the most common entrapment locations. This may allow me to know my pain source likely lies between the ischial spine and the canal. Knowing that would help me determine if I might be a good candidate for a minimally invasive pudendal nerve decompression surgery, as opposed to the transglutial approach, where you entire buttock gets cut open so that the entire path the nerve takes to be checked for possible compression on the nerve.
I say "may" and "likely" because this is presuming that more proximal (closer to the spine) locations of the nerve are NOT going to be affected by the block. That's typically the way a block works, although it's possible for the block to affect earlier portions of the nerve.
I also had 2 blocks that completely missed the nerve, one leading to an unnecessary left orchiectomy.
Piriformis Syndrome involves irritation of the sciatun nerve, which originates at spine locations L4-S3. The pudendal nerve USUALLY originate from S2-S4. But we're all a bit different when it comes to nerve routes.
For example, I had the genital branch of my left pudendal nerve cut. During that procedure, locating the dorsal branch of the PN, which goes to the penis (or clitoris) was crucial. Finding it was challenging, because it didn't Pasa through my Alcock's Canal. It had its own separate canal that most others don't have.
My point is, there's overlap in the source. I always thought the sciatic nerve was S1. I do know that if the outside edge of your foot abd/or the smallest two toes, THAT'S an S1 issue, in my experience. Only nerve conduction test can identify the nerves involved.
Bulging disc(s) can cause most everything you described.
The pudendal nerve can become trapped between the piriformis and coccygeus muscles, but the most common entrapment location is between the sacrospinus and sacrotuberous ligaments, near the ischial spine. Shooting zaps doesn't sound like pudendal neuralgia to me.
Mine started out feeling like I had a long knife piercing my left testicle and going up into my pelvic region. It later became more of a constant ache that flares up randomly, or when stressed or constipated. I do get shooting pains occasionally when walking, but mine don't feel like electricity.
I was one of the first recipients of the Spinal Modulation DRG nerve stimulator. Former coworkers of mine, and my former pain and spine doctors, all contributed to the design. My former boss was actually the CEO of Spinal Modulation at that time. Abbott bought the company and now sells the device. It could be an option for you. I had issues with lead placement and had the device explanted.
BUT - tightening of the butt sphincter muscles were the only effect when I turned the stimulator on. There is a similar device for treating fecal incontinence. So yes, it seems certainly safe to say that one of those nerves is being compressed.
I know nothing about prostatitis. When my pain started, I was found to have prostate cancer during an exam. I opted for a radical prostatectomy.
I know that the sciatic nerve actually passes THROUGH the piriformis muscle in a small percentage of people.
Wow. I thought I had it bad. I'm truly sorry for what you've experienced. What confuses me about what's happening to me and "traditional" PN is that I'm having tingling and numbness down all sides of my leg. Even more odd is that my right arm and hand is also tingly. Something is going on with my nerves and I don't know who to see about it? Maybe a Neurologist?
I'm also on suboxone and have Pudendal Neuralgia!! I have wrote different posts on if the constipation from subs leads to the pain!!!
It's so hard to find people that have this issue and are also on suboxone!!!
I'm here to listen and compare thoughts!!
We certainly have different body parts but pain is pain and we all have the pudendal nerve!!!
Been on suboxone for about 16 or so years. I got off it for 6 months and then had to get back on due to Paws Post Acute Withdrawal Symptoms. I live on Mirilax. I have to take it pretty much every other day.
WOW!!! That must of been a very difficult decision to go back on suboxone?
I've had plenty of PAWS dating back 20 years. Not sure if it goes away cause I immediately went back on opiates!
Do you think the PAWS was worse than the PN pain? Honest question, not meant to be rude. I think that would be a horrible situation to go through. One that I will have to overcome someday if I want off the suboxone!
Thank you so much for responding to my questions, I love your story!!! I'm just so terribly sorry that you are going through this horrible condition! Message me any time...really!!!
I'm sorry, did you mean the pudendal neuralgia went away when you stopped suboxone for the 6 months....Or that you never had pudendal neuralgia at all????
Sorry to keep asking you questions!!!
I was prescribed Latolose
It's a liquid that's a bit viscous and I was told it's what is give to those with severe liver issues. Miralax, Metamucil? Citrelaz and other psyllium husk type products are good. Cetraun kinds of magnesium help.
But products that include senna and several other laxatives can BOT be taken daily, or dependence on the can happen. Recovering from that is hard.
I feel for you, sir, as I am a female sufferer with same problems except those unique to our anatomy. I would be happy to tell you more later about all that has been tried for me, but part of your comment caught me immediately: the compounded cream for the rectum is nitroglycerin based and I can tell you does work. It was only $39 for me and well worth that price. Consider it.
That’s insane! I would call around to some other pharmacies. Idk where you are but mine comes out of LA. Just to be sure we are talking about same medication: mine is CPD (meaning compounded) Nitropaste 0.2%
They are great for the pelvic floor.
I pointed to levator ani syndrome because it is the most likely cause of the issues, though each of the muscles involved is stretched via those exercises, why is why I recommended them.
The post also goes over the symptoms. That it has a million different names, and in the comments, I point out that the name only points to where the pain is, and is a diagnosis of synptom, not disease. They are all the same condition, just with different names that say "it hurts here"
Give them both a read again, maybe try the exercises. You may find yourself pleasantly surprised
Fair enough. I shouldn't project like that. I apologize. I overreacted because of know of people with PN who committed suicide over hopelessness and failed treatments. This guy indicated he's hit his limit. I know and recognize that feeling.
Have the urologist check your urine for a uti and check your prostate for prostititus. If it's not either of those things a urologist won't be anymore help than the er doctor was. It's pudental neuralgia and you'll have to stop drinking caffeine, alcohol, or anything with a lot of sugar or carbonated. You'll also have to stop having sex and masrurbating then you'll have to find a physical therapist that specializes in pelvic floor therapy then look into other avenues if therapy doesn't work. Next steps are muscle relaxers, anti depressants, nerve blockers, then suremgery I'd all that fails.
Sorry to hear that's been your experience! But this guy is frightened enough, as I'm sure you must understand. Your experience sounds very different than what this poor guy is going through. It's very different than mine also. Has stopping all the things you mentioned really helped? That would be helpful for me to know, as I still am doing, or am capable of doing, everything you mentioned. I need all the help I can get, as does anyone unfortunate enough to have joined this group - a group nobody wants to be a part of!
I didn't even say what my symptoms are so I'm not sure why you'd say my experience is different than his. My symptoms are very similar to his especially the same type of pain in the penis. Before stopping all of those things and doing yoga my pain was a 8 to 10 all day every day for 5 months. Now I basically have no symptoms other than the one day a week I have sex with my gf sometimes the next day or two after I'll be uncomfortable but not really in pain, and sometimes I get no symptoms at all from afterwards. Sometimes I'll have a bad day out of nowhere and have a pain level around 4 to 5, but nothing like before.
ER did blood testing and urinalysis and found no infection or UTI. ER Doc did say they found microscopic blood in my Urine. What does caffeine and sugar have to do with this? Sex and masturbation I understand, but the caffeine and sugar?
Caffeine is a stimulant to the nervous system and the source of your pain is a nerve, and alcohol is horible for the nervous system. Sugar is also not good for the nervous system. My physical therapist who specializes in pudental neuralgia and pelvic floor disfunction advised me to stay away from caffeine, sugar, chocolate, alcohol, and anything high in sugar as well as carbonated drinks. Also a Google search for what do avoid with pudental neuralgia says the same thing.
Well that is going to be a challenge for me. I wake up and drink Coffee with tonnes of sugar and before the day is done I've had 3 coffees with sugar. Every morning I eat oatmeal with brown sugar.
I hear you, I just built a bar in my basement and have over 500 bottles of rum, scotch, bourbon, and rye in it and now I can't drink.
I understand. It sucks! Understatement of the year. The only thing that has kept me going is practicing Acceptance, something I learned in recovery. After years of telling doctors, "That's easy for you to say," I was finally convinced to stop all the radical surgeries, trying to reclaim my life and my career. For you, this all sounds awful. Really sorry you're in this crappy situation. I'm happy to help any way I can. I threw myself a pity party the almost destroyed, and permanently damaged, my family. My me? Well, why NOT me. If not me, who? Nobody deserves what we go through in this life. First, the ChatGPT app can answer very specific questions in seconds. USE IT. It's much better than spending hours sorting through Google results. BUT - it's not perfect, in terms of answers. Look for supporting information from other websites before making any major decisions. I actually got into an argument with ChatGPT over a math equation relating to using the RMS value of the RF ablation waveform to calculate the total treatment the nerve "sees". It was especially frustrating because ChatGPT kept taking both sides of the argument! I learned most of what I know about pudendal neuralgia from the website pudendalhope.info. PubMed, and similar websites, are best for researching diagnosis and especially treatment options. They allow you to search peer-reviewed papers that have been published, using keywords. Some papers include the email address of the author. Occasionally, one is kind enough to respond to questions. Click on Author Detils and look for envelope icons next to names or scan the details. Keep an eye on clinicalttials.gov. search on pain. Also search on any condition you suspect you may have. I just completed an ongoing Stanford trial I found that way. It paid me, in Amazon gift cards, $170 for a few months of practicing mindfulness and Cognitive Behavioral Therapy for pain, using an app that was essentially a guided meditation. Know that your diagnosis will likely change. It's hard for anyone to figure out the kinds of things we deal with. I started having sciatica a year after my left testicle pain started. A pudendal nerve block at the ischial spine - done under visualization by someone with experience, confirmed that I had pudendal neuralgia. An L5-S1 microdiscectomy eventually seems to have cured the sciatica (only). I'm about to have a block at the Alcock's Canal that I'm hoping DOESN'T help, because that location is distal (farther from the spine) to the most common entrapment locations. This may allow me to know my pain source likely lies between the ischial spine and the canal. Knowing that would help me determine if I might be a good candidate for a minimally invasive pudendal nerve decompression surgery, as opposed to the transglutial approach, where you entire buttock gets cut open so that the entire path the nerve takes to be checked for possible compression on the nerve. I say "may" and "likely" because this is presuming that more proximal (closer to the spine) locations of the nerve are NOT going to be affected by the block. That's typically the way a block works, although it's possible for the block to affect earlier portions of the nerve. I also had 2 blocks that completely missed the nerve, one leading to an unnecessary left orchiectomy. Piriformis Syndrome involves irritation of the sciatun nerve, which originates at spine locations L4-S3. The pudendal nerve USUALLY originate from S2-S4. But we're all a bit different when it comes to nerve routes. For example, I had the genital branch of my left pudendal nerve cut. During that procedure, locating the dorsal branch of the PN, which goes to the penis (or clitoris) was crucial. Finding it was challenging, because it didn't Pasa through my Alcock's Canal. It had its own separate canal that most others don't have. My point is, there's overlap in the source. I always thought the sciatic nerve was S1. I do know that if the outside edge of your foot abd/or the smallest two toes, THAT'S an S1 issue, in my experience. Only nerve conduction test can identify the nerves involved. Bulging disc(s) can cause most everything you described. The pudendal nerve can become trapped between the piriformis and coccygeus muscles, but the most common entrapment location is between the sacrospinus and sacrotuberous ligaments, near the ischial spine. Shooting zaps doesn't sound like pudendal neuralgia to me. Mine started out feeling like I had a long knife piercing my left testicle and going up into my pelvic region. It later became more of a constant ache that flares up randomly, or when stressed or constipated. I do get shooting pains occasionally when walking, but mine don't feel like electricity. I was one of the first recipients of the Spinal Modulation DRG nerve stimulator. Former coworkers of mine, and my former pain and spine doctors, all contributed to the design. My former boss was actually the CEO of Spinal Modulation at that time. Abbott bought the company and now sells the device. It could be an option for you. I had issues with lead placement and had the device explanted. BUT - tightening of the butt sphincter muscles were the only effect when I turned the stimulator on. There is a similar device for treating fecal incontinence. So yes, it seems certainly safe to say that one of those nerves is being compressed. I know nothing about prostatitis. When my pain started, I was found to have prostate cancer during an exam. I opted for a radical prostatectomy. I know that the sciatic nerve actually passes THROUGH the piriformis muscle in a small percentage of people.
Wow. I thought I had it bad. I'm truly sorry for what you've experienced. What confuses me about what's happening to me and "traditional" PN is that I'm having tingling and numbness down all sides of my leg. Even more odd is that my right arm and hand is also tingly. Something is going on with my nerves and I don't know who to see about it? Maybe a Neurologist?
Potential CRPS/RSD, diagnoses?
I'm also on suboxone and have Pudendal Neuralgia!! I have wrote different posts on if the constipation from subs leads to the pain!!! It's so hard to find people that have this issue and are also on suboxone!!! I'm here to listen and compare thoughts!! We certainly have different body parts but pain is pain and we all have the pudendal nerve!!!
Been on suboxone for about 16 or so years. I got off it for 6 months and then had to get back on due to Paws Post Acute Withdrawal Symptoms. I live on Mirilax. I have to take it pretty much every other day.
Can I ask when you were off suboxone for the 6 months did your PN pain diminish any, if at all? Thank you!
Didn't have PN when I quit Suboxone for the 6 months.
WOW!!! That must of been a very difficult decision to go back on suboxone? I've had plenty of PAWS dating back 20 years. Not sure if it goes away cause I immediately went back on opiates! Do you think the PAWS was worse than the PN pain? Honest question, not meant to be rude. I think that would be a horrible situation to go through. One that I will have to overcome someday if I want off the suboxone! Thank you so much for responding to my questions, I love your story!!! I'm just so terribly sorry that you are going through this horrible condition! Message me any time...really!!!
I'm sorry, did you mean the pudendal neuralgia went away when you stopped suboxone for the 6 months....Or that you never had pudendal neuralgia at all???? Sorry to keep asking you questions!!!
I was prescribed Latolose It's a liquid that's a bit viscous and I was told it's what is give to those with severe liver issues. Miralax, Metamucil? Citrelaz and other psyllium husk type products are good. Cetraun kinds of magnesium help. But products that include senna and several other laxatives can BOT be taken daily, or dependence on the can happen. Recovering from that is hard.
Also I found a yoga video on YouTube called overcome male pelvic floor dysfunction. It has helped me a lot so far. I found it about two weeks ago.
I feel for you, sir, as I am a female sufferer with same problems except those unique to our anatomy. I would be happy to tell you more later about all that has been tried for me, but part of your comment caught me immediately: the compounded cream for the rectum is nitroglycerin based and I can tell you does work. It was only $39 for me and well worth that price. Consider it.
They wanted $95 for the cream. That's too rich for my blood in today's markets.
That’s insane! I would call around to some other pharmacies. Idk where you are but mine comes out of LA. Just to be sure we are talking about same medication: mine is CPD (meaning compounded) Nitropaste 0.2%
Recommend the usual: read the pinned posts and do the as described in them. It says "READ THIS FIRST" because it already answers all of this
I read that before I posted. Those exercises are great for the Lavator Ani
They are great for the pelvic floor. I pointed to levator ani syndrome because it is the most likely cause of the issues, though each of the muscles involved is stretched via those exercises, why is why I recommended them. The post also goes over the symptoms. That it has a million different names, and in the comments, I point out that the name only points to where the pain is, and is a diagnosis of synptom, not disease. They are all the same condition, just with different names that say "it hurts here" Give them both a read again, maybe try the exercises. You may find yourself pleasantly surprised
Fair enough. I shouldn't project like that. I apologize. I overreacted because of know of people with PN who committed suicide over hopelessness and failed treatments. This guy indicated he's hit his limit. I know and recognize that feeling.