Help pls.

[Unlucky]

Hello everyone,
I am new here and I need advice and information considering my current state.

This is my story. Late October last year I had noticed a curvature in my penis followed by some discomfort but nothing major. Few days pass by and after the first sexual activity i notice intense pain unilaterally on the right side. Decided to brush it off for a while because it wasn’t something that I couldn’t bare at the time and everything looked normal. A few months pass and the pain persisted and it started to migrate to my buttocks especially while sitting. Around my 22nd birthday I became really concerned about the condition and decided to visit a radiology specialist. I’ve done an ultrasound of penis which showed calcifications of distal part of the penis. The radiologist had no clue as to why the pain is present. After that I saw a urology specialist who told me that the calcifications are probably there because of microtrauma that resulted from sex and masturbation and that the curvature isn’t so bad that it would be detrimental to my sex life. He didn’t really take the pain into account and when I asked him what should I do he said that I should refrain from sexual activity for about a month and take pain medication whenever I felt pain. A month passed and not only did the pain persist and did not react to medication but it has worsened quite a bit now migrating all the way from my lower spine to the tip of the penis and into the buttocks. The two things that really aggravate the pain are sex/masturbation and prolonged sitting. The pain isn’t as bad as some of other people describe it and I have no difficulty urinating or defecating but it lasts all day and the numbing is unbearably hard to tolerate when it lasts that long.

Now almost a year later from when the pain started in October I kind of lost hope that I will ever be in no pain. I’ve spent countless hours online looking for a possible cause to my condition but the diagnosis of Peryone’s disease or Pudendal neuralgia feel a bit severe to me. The pain is obviously present and doesn’t seem like it’s passing. I have a few doctors in my family and I myself too am a med student but talking to them is quite confusing because some say that it’s probably nothing while others say it might indeed be serious.

My question to you here is what do you think of my condition, could it be PN or is it something less serious and will I ever be able to live life pain-free. I’m only 22 and I already feel robbed of my youth as my university, private social and sex life suffer from this condition. This is truly devastating and I am getting more depressed each passing day. I have another urologist and neurology specialist appointment in about a month and I would appreciate if you suggested what to say to them and what procedures should I be adamant about going through when talking to them because from all that I gathered here online is that doctors rarely take PN into account when diagnosing a patient?

[Violet M]

Hello Unlucky,

That is a very difficult thing you are going through. Even if the pain is not severe, it clearly affects your life significantly, so I would not be comfortable just saying it's probably nothing. The pain of pudendal neuralgia is not always severe. There are different levels of pain that can exist with this diagnosis.

For your upcoming appointments, it will depend a lot on what experience and knowledge the doctors have of PN. I went to a neurologist early on who had no clue and told me to see a psychiatrist. But I knew it wasn't all in my head and I'm glad I didn't listen to that neurologist. Here is a quick list of the diagnostics I would want to pursue in order to determine whether I had PN. Maybe these doctors can help you pursue some of these diagnostics.

1. MRI/MRN of the pelvis using Hollis Potter Protocol. If you live in the US, you could call her office to see if they can tell you a location somewhere in the US nearest to you where they use her protocol.
https://www.pudendalhope.info/united-st ... icians/#NY (scroll down to her contact info)
Also, lumbosacral and lumbosacral plexus MRI's to rule out spinal radiculopathy or something else obvious as a cause of your symptoms.
2. Evaluation by pelvic floor PT who specializes in pudendal neuralgia
https://www.pudendalhope.info/list-of-p ... herapists/
3. Electrodiagnostic testing/electromyography - if you can find someone who does it.
4. Pudendal nerve block for diagnostic purposes. I see them as primarily useful for diagnostic purposes.
Some prominent medical organizations have adopted guidelines stating there is no evidence for use of steroids in pudendal nerve blocks but if you do have steroids, no more than 3 are recommended by some doctors due to possible damage to the nerve.
5. If you don't have a conclusive diagnosis of Peyronie's disease, and there are no local doctors who are knowledgeable about treating pudendal neuralgia, you might want to consider traveling to a PN specialist.
https://www.pudendalhope.info/list-of-doctors-2/

I don't know all of the diagnostics you have had so far but since the pain is clear up into your spine it seems like a lumbosacral MRI and lumbosacral plexus MRI would be pretty important if you haven't had them already. My PN specialist wanted me to get both of those MRI's. You could also do a pelvic MRI that uses software that enhances the image of the pudendal nerve, although they aren't entirely accurate for diagnosing pudendal neuralgia or pudendal nerve entrapment.

Since you suspect peyronie's disease I'm guessing you have already had some of the tests to rule that out including the ultrasound as you mentioned. Did you get a conclusive diagnosis on that? Mayo Clinic's website gives a good overview of it, including diagnosis and treatment. https://www.mayoclinic.org/diseases-con ... c-20353468
Your description of symptoms sounds similar to a lot of what the article discusses, although you seem to have developed some additional symptoms. Sitting pain is often associated with pudendal neuralgia. It can be the result of pelvic floor muscles becoming tense over time and irritating the nerve, or you can have a true entrapment of the nerve between ligaments or encased in muscle fascia. I could see a scenario where you had Peyronie's disease causing pain in the penis where the calcifications are, but over time the pelvic floor muscles start to tighten up as a result of the initial pain and the pain spreads. As the muscle tension increases, it could irritate the pudendal nerve. So you could have pudendal neuralgia but it might not be the primary cause of the pain. But I could also see a scenario where the calcifications are irritating the dorsal penile branch of the pudendal nerve and the smaller nerve endings in the penis. Has anyone suggested injections or medications for the calcifications? Here is an interesting article:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3565600/

Pudendal neuralgia is sometimes considered a diagnosis of exclusion -- in other words, if other obvious things such as a tumor have been ruled out and your symptoms, history, clinical exam, and other diagnostics such as MRI (especially MRI with special software to enhance the nerve) and pudendal nerve block point to a diagnosis of pudendal neuralgia, then you would want to pursue treatment specific to pudendal neuralgia. If you meet the criteria for a nerve entrapment, then you would want to get an opinion from a surgeon who does pudendal nerve decompression surgery. This article gives an overview of criteria for nerve entrapment, although the criteria listed is not 100% accurate based on my experience and what other patients have reported.
https://www.pudendalhope.info/wp-conten ... iteria.pdf

From my experience, I think it is important to get evaluated by a physical therapist who specializes in treatment of pudendal neuralgia or pelvic pain. I was diagnosed accurately by a PT when the doctors in my city had no clue what was the matter.

So, I can't say if you likely have PN but I'm just brainstorming ideas and possibilities. Hopefully, with the right treatments you will be able to heal from the pain and be able to live a normal life. There was a time I thought my life was over, but I have a great life now. You are young and have a better chance of healing than an older person would. So, keep fighting and searching for answers until you find the right doctor who knows how to help you.

Violet

[Unlucky]

Hello Unlucky,

That is a very difficult thing you are going through. Even if the pain is not severe, it clearly affects your life significantly, so I would not be comfortable just saying it's probably nothing. The pain of pudendal neuralgia is not always severe. There are different levels of pain that can exist with this diagnosis.

For your upcoming appointments, it will depend a lot on what experience and knowledge the doctors have of PN. I went to a neurologist early on who had no clue and told me to see a psychiatrist. But I knew it wasn't all in my head and I'm glad I didn't listen to that neurologist. Here is a quick list of the diagnostics I would want to pursue in order to determine whether I had PN. Maybe these doctors can help you pursue some of these diagnostics.

1. MRI/MRN of the pelvis using Hollis Potter Protocol. If you live in the US, you could call her office to see if they can tell you a location somewhere in the US nearest to you where they use her protocol.
https://www.pudendalhope.info/united-st ... icians/#NY (scroll down to her contact info)
Also, lumbosacral and lumbosacral plexus MRI's to rule out spinal radiculopathy or something else obvious as a cause of your symptoms.
2. Evaluation by pelvic floor PT who specializes in pudendal neuralgia
https://www.pudendalhope.info/list-of-p ... herapists/
3. Electrodiagnostic testing/electromyography - if you can find someone who does it.
4. Pudendal nerve block for diagnostic purposes. I see them as primarily useful for diagnostic purposes.
Some prominent medical organizations have adopted guidelines stating there is no evidence for use of steroids in pudendal nerve blocks but if you do have steroids, no more than 3 are recommended by some doctors due to possible damage to the nerve.
5. If you don't have a conclusive diagnosis of Peyronie's disease, and there are no local doctors who are knowledgeable about treating pudendal neuralgia, you might want to consider traveling to a PN specialist.
https://www.pudendalhope.info/list-of-doctors-2/

I don't know all of the diagnostics you have had so far but since the pain is clear up into your spine it seems like a lumbosacral MRI and lumbosacral plexus MRI would be pretty important if you haven't had them already. My PN specialist wanted me to get both of those MRI's. You could also do a pelvic MRI that uses software that enhances the image of the pudendal nerve, although they aren't entirely accurate for diagnosing pudendal neuralgia or pudendal nerve entrapment.

Since you suspect peyronie's disease I'm guessing you have already had some of the tests to rule that out including the ultrasound as you mentioned. Did you get a conclusive diagnosis on that? Mayo Clinic's website gives a good overview of it, including diagnosis and treatment. https://www.mayoclinic.org/diseases-con ... c-20353468
Your description of symptoms sounds similar to a lot of what the article discusses, although you seem to have developed some additional symptoms. Sitting pain is often associated with pudendal neuralgia. It can be the result of pelvic floor muscles becoming tense over time and irritating the nerve, or you can have a true entrapment of the nerve between ligaments or encased in muscle fascia. I could see a scenario where you had Peyronie's disease causing pain in the penis where the calcifications are, but over time the pelvic floor muscles start to tighten up as a result of the initial pain and the pain spreads. As the muscle tension increases, it could irritate the pudendal nerve. So you could have pudendal neuralgia but it might not be the primary cause of the pain. But I could also see a scenario where the calcifications are irritating the dorsal penile branch of the pudendal nerve and the smaller nerve endings in the penis. Has anyone suggested injections or medications for the calcifications? Here is an interesting article:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3565600/

Pudendal neuralgia is sometimes considered a diagnosis of exclusion -- in other words, if other obvious things such as a tumor have been ruled out and your symptoms, history, clinical exam, and other diagnostics such as MRI (especially MRI with special software to enhance the nerve) and pudendal nerve block point to a diagnosis of pudendal neuralgia, then you would want to pursue treatment specific to pudendal neuralgia. If you meet the criteria for a nerve entrapment, then you would want to get an opinion from a surgeon who does pudendal nerve decompression surgery. This article gives an overview of criteria for nerve entrapment, although the criteria listed is not 100% accurate based on my experience and what other patients have reported.
https://www.pudendalhope.info/wp-conten ... iteria.pdf

From my experience, I think it is important to get evaluated by a physical therapist who specializes in treatment of pudendal neuralgia or pelvic pain. I was diagnosed accurately by a PT when the doctors in my city had no clue what was the matter.

So, I can't say if you likely have PN but I'm just brainstorming ideas and possibilities. Hopefully, with the right treatments you will be able to heal from the pain and be able to live a normal life. There was a time I thought my life was over, but I have a great life now. You are young and have a better chance of healing than an older person would. So, keep fighting and searching for answers until you find the right doctor who knows how to help you.

Violet

Hello Violet,

First of all I want to thank you for such a detailed response. It’s good to be recognized and understood by someone who has experience with this condition.

Upon reading everything you mentioned I will definitely keep in mind all the possible procedures and try to do as many as possible. The only problem is that I come from a small european country where only a handful of people have been diagnosed with PN because there are no physicians specialized in this condition therefore those procedures might not even be available here. I am obviously more than willing to travel to the nearest PN specialist but that may not be the most convenient situation rn so my main concern is that either I won’t get a conclusive diagnosis or even worse they will send me to a psychiatrist. It’s almost been a year since the initial flare up and I am so over it honestly and I am willing to go the extra mile just so I can live a normal life again.

Since I have some knowledge of medicine at this point I can totally see how the scenarios you described could lead to pudendal neuralgia. If vigorous sexual activity was the main cause of calcification formation that could absolutely lead to nerve entrapment or excessive pressure being put on said nerve. As of yet the only procedure I’ve done was the ultrasound mentioned but the urologist I’ve spoken to didn’t want to label it as Peryone’s disease due to the plaque not being palpable at the time nor was the curvature of the penis significant. I assume that is also the reason why he didn’t recommend any injections into the plaque.
There is a surgical option that can be done to remove the calcifications but it isn’t really that promising and it’s mostly performed on severe cases of Peryone’s. Also I don’t really know if the entrapment surgery can be performed in that scenario even if I meet all the criteria for PN/PNE.

I have two appointments in little less than a month and I definitely look forward to them. I will obviously mention PN in hopes that they take interest in my case and help me get to the bottom of this. I am aware that I might even have to travel outside of my country but at this point I am willing to try anything. That being said I am obviously afraid that It will take years to find a solution or that I will have to put up with this condition for the rest of my life. It’s scary to think that all of my friends are having fun being in intimate relationships and I am laying at home in pain wondering If I’ll ever be able to date again. I truly hope that in a year this will all be just a memory…

Nonetheless, I am obviously grateful to have access to this website where I can exchange experiences with other people and further educate myself about this condition. I am also appreciative of the fact that my pain as of right now is relatively mild with the highest it’s been was at a 5-6. Also I have no urination or defecation problems rn which is good but that’s probably normal since the most likely place of nerve irritation is in the genital region.

Lastly, I would like to ask you for advice on lifestyle changes that you applied in order to alleviate the pain such as exercises that worked for you, medication you took that worked (because ibuprofen and acetaminophen do virtually nothing), also sleep positions that helped you because my buttocks pain is pretty bad when I wake up. What’s the best pillow for sitting, did the heating pads work for you etc.
I know that everyone is different and not everything will work for me but I honestly don’t know where to start so any advice would be beneficial.

[April]

Hi Unlucky,

You asked Violet for advice for pain relief. Have you tried ice or a hot heating pad? Both worked for me. I put amount of water in condoms, froze them, wrapped them in a wet paper towel, and put them on a pad in my underwear. That provided pain relief and I could use it when I left the house. At home, a heating pad in high also worked for me. (I still use that when I have a flare). I cut out the pelvic floor of biking shorts and use a vinyl heating pad on high. The cutout shorts prevent my legs from getting the heat directly.

Take care,
April

[Pain_Darren]

I don't think men won't frozen condoms sitting near there ass April, just saying

[Violet M]

Upon reading everything you mentioned I will definitely keep in mind all the possible procedures and try to do as many as possible. The only problem is that I come from a small european country where only a handful of people have been diagnosed with PN because there are no physicians specialized in this condition therefore those procedures might not even be available here. I am obviously more than willing to travel to the nearest PN specialist but that may not be the most convenient situation rn so my main concern is that either I won’t get a conclusive diagnosis or even worse they will send me to a psychiatrist. It’s almost been a year since the initial flare up and I am so over it honestly and I am willing to go the extra mile just so I can live a normal life again.

I understand travel would be difficult. You could email some of the European PN specialists to see if you could at least do a phone consult with them on your case. https://www.pudendalhope.info/european-physicians/
I think that Dr. Bautrant and Dr. Aszmann reply to emails. I recently heard that Dr. Bautrant charges 300 Euros for a phone consultation.

Lastly, I would like to ask you for advice on lifestyle changes that you applied in order to alleviate the pain such as exercises that worked for you, medication you took that worked (because ibuprofen and acetaminophen do virtually nothing), also sleep positions that helped you because my buttocks pain is pretty bad when I wake up. What’s the best pillow for sitting, did the heating pads work for you etc.
I know that everyone is different and not everything will work for me but I honestly don’t know where to start so any advice would be beneficial.

There were no exercises that worked for me prior to pudendal nerve release surgery. It was exercise that got me into trouble in the first place and movement just caused a flare-up in pain. However; typically walking or swimming (no frog kick) are considered safe exercises for people with pudendal nerve entrapment, but if there is a chance you have an entrapment, anything that flares up your pain should be avoided because you could be doing further damage to the nerve.
You can check out this link for more info:
https://www.pudendalhope.info/category/ ... e-changes/

Medications that helped me were:

1. oxycodone (I took it only in the evening and nite so I wouldn't develop a tolerance)
2. an SSRI antidepressant for urinary symptoms but since you don't have that I don't know if an SSRI would be indicated in your case.
3. Clonazepam - so I could get a bit of sleep.

Some options you might try are duloxetine, pregabalin (or a combination of duloxetine and pregabalin), topical premjact spray (basically lidocaine spray) for penis pain but you have to be careful not to overdose since it can affect your heart, or if you have a pain doctor, they might prescribe narcotics for you. Some people have had success with buprenorphine because it is much less likely to cause you to develop a tolerance to it. If your symptoms are associated with pelvic floor muscle tension, you could try muscle relaxer rectal suppositories. More info on meds here: https://www.pudendalhope.info/medication-management/

I used ice and heat like April, but I found the gel ice packs worked well. Just use a layer of fabric next to your skin so you don't get cold injury. I also did a lot of hot/cold sitz baths which I describe in the following link: viewtopic.php?t=5267
If you go to page 3 of that link there are updates on links to supplies similar to what I used.

I slept on my side with a pillow between my knees. I used a roho cushion for sitting, but really, nothing worked for sitting prior to pudendal nerve release surgery.

I'm sorry this is affecting your life so much, especially at a time when you would expect to be in the best health and enjoying life. You still have options for treatment and a chance to get better.

Violet

[Unlucky]

Upon reading everything you mentioned I will definitely keep in mind all the possible procedures and try to do as many as possible. The only problem is that I come from a small european country where only a handful of people have been diagnosed with PN because there are no physicians specialized in this condition therefore those procedures might not even be available here. I am obviously more than willing to travel to the nearest PN specialist but that may not be the most convenient situation rn so my main concern is that either I won’t get a conclusive diagnosis or even worse they will send me to a psychiatrist. It’s almost been a year since the initial flare up and I am so over it honestly and I am willing to go the extra mile just so I can live a normal life again.

I understand travel would be difficult. You could email some of the European PN specialists to see if you could at least do a phone consult with them on your case. https://www.pudendalhope.info/european-physicians/
I think that Dr. Bautrant and Dr. Aszmann reply to emails. I recently heard that Dr. Bautrant charges 300 Euros for a phone consultation.

Lastly, I would like to ask you for advice on lifestyle changes that you applied in order to alleviate the pain such as exercises that worked for you, medication you took that worked (because ibuprofen and acetaminophen do virtually nothing), also sleep positions that helped you because my buttocks pain is pretty bad when I wake up. What’s the best pillow for sitting, did the heating pads work for you etc.
I know that everyone is different and not everything will work for me but I honestly don’t know where to start so any advice would be beneficial.

There were no exercises that worked for me prior to pudendal nerve release surgery. It was exercise that got me into trouble in the first place and movement just caused a flare-up in pain. However; typically walking or swimming (no frog kick) are considered safe exercises for people with pudendal nerve entrapment, but if there is a chance you have an entrapment, anything that flares up your pain should be avoided because you could be doing further damage to the nerve.
You can check out this link for more info:
https://www.pudendalhope.info/category/ ... e-changes/

Medications that helped me were:

1. oxycodone (I took it only in the evening and nite so I wouldn't develop a tolerance)
2. an SSRI antidepressant for urinary symptoms but since you don't have that I don't know if an SSRI would be indicated in your case.
3. Clonazepam - so I could get a bit of sleep.

Some options you might try are duloxetine, pregabalin (or a combination of duloxetine and pregabalin), topical premjact spray (basically lidocaine spray) for penis pain but you have to be careful not to overdose since it can affect your heart, or if you have a pain doctor, they might prescribe narcotics for you. Some people have had success with buprenorphine because it is much less likely to cause you to develop a tolerance to it. If your symptoms are associated with pelvic floor muscle tension, you could try muscle relaxer rectal suppositories. More info on meds here: https://www.pudendalhope.info/medication-management/

I used ice and heat like April, but I found the gel ice packs worked well. Just use a layer of fabric next to your skin so you don't get cold injury. I also did a lot of hot/cold sitz baths which I describe in the following link: viewtopic.php?t=5267
If you go to page 3 of that link there are updates on links to supplies similar to what I used.

I slept on my side with a pillow between my knees. I used a roho cushion for sitting, but really, nothing worked for sitting prior to pudendal nerve release surgery.

I'm sorry this is affecting your life so much, especially at a time when you would expect to be in the best health and enjoying life. You still have options for treatment and a chance to get better.

Violet

Dear Violet,

Thanks for all the information provided. I will definitely try everything in order to alleviate the pain. Even though it is scary, I’m slowly getting used to it. That being said I truly do hope I won’t have to live with this condition for the rest of my life. If you have anything else you want to share feel free to quote me here or message me privately (if that’s an option on this web page I don’t know I’m still new to all of this). If I make any significant progress I’ll be sure to update here for anyone else that may be going through something similar.

Best regards, Unlucky.

[Violet M]

Dear Unlucky,

Yes, there is a private message option on this forum. In the upper right of the forum page you would click on "private message" and then you can type and submit a message to someone using their username. Another way, which is probably easier, is if you are reading someone's post on the forum, you click on their username and then click on "send private message". Then type your message and submit.

We hope to hear some good news from you in the future. In the meantime, you know there are people here who care and wish the best for you.

Violet