Hello everyone,
My story isn’t a heroic story where patients developed PN after a difficult childbirth or elite athleticism. I’m a 42-year-old man who developed pudendal neuralgia (PN) following the use of a prostate massager—a single misstep that profoundly disrupted my life. It’s not easy to share, but I believe honesty is important in communities like this.
How it started:
I experienced immediate electric/shooting pain in the rectum and perineum after using the device.
My libido completely disappeared for about two weeks, but fortunately returned to baseline afterward.
Lacking awareness of PN at the time, I pursued unrelated diagnoses and treatments for several months.
Eventually, after extensive research, I began to suspect pudendal nerve involvement.
I started Pregabalin and made key lifestyle adjustments.
My symptoms improved and stabilized somewhat on medication.
At the six-month mark, I underwent a pudendal nerve block. It provided significant relief—but only for a single day.
I worked with three different pelvic physiotherapists. Unfortunately, none produced meaningful results.
Since then, progress has plateaued.
My current status:
Pain levels: Usually range between 1–3 on a typical day.
Pain location: The discomfort shifts between the area where the scrotum meets the perineum, the rectum, and the inside of the left buttock. It’s rarely all at once, but pressure in any of these areas can trigger a flare that lasts 1–2 days.
Internal pelvic work intolerance: Any attempt at internal pelvic floor work or digital rectal examination triggers an extreme reaction: burning pain between the left buttock and rectum—levels 8–9 at their worst.
Post-BM issues: Bowel movements cause 15–20 minutes of burning pain in the rectum. Spicy foods trigger severe burning that can persist for 8+ hours.
Flare frequency: Despite trying to avoid known triggers, I still experience at least one flare-up per week.
Functionality: I can walk with only mild discomfort, and I can sit (with effort) for about an hour.
Where I am now:
I feel stuck. I’ve exhausted the basic conservative options and haven’t yet found an approach that creates lasting relief. I’m reaching out to this community—especially those with long-term experience—for insight and next steps.
12 Months in and stuck
Re: 12 Months in and stuck
Welcome to the forum, Alex. I'm sorry to hear about your pain. You should have no regrets. How would anyone know that this problem could come from the use of that. Have you consulted with a pn surgeon to see if you are a good candidate for surgery? I think Hibner treats men now but he doesn't take insurance, so he is expensive. (HMOs might cover it it, though, since HMOs are unlikely to have a pn surgeon in network.) Have you tried ice and/or heat to deal with the pain? Those aren't solutions, obviously, but they can make managing it easier.
Take care,
April
Take care,
April
Re: 12 Months in and stuck
Thank you for the warm welcome and for taking the time to respond.
Admittedly, anatomy isn’t my strongest area, and I’d really appreciate your help in understanding how my actions might have led to an actual nerve entrapment. I can clearly see how they could have triggered irritation and hypersensitivity, but the concept of mechanical entrapment is still a bit unclear to me.
Although my current quality of life is limited, I’m still able to function — and for now, I’m hesitant to risk what little life I have for the uncertain possibility of improvement through surgery. Surgery that takes many months to a few years with no guarantee of getting back to even base level of pain.
I have deep respect for the surgeons performing pudendal nerve decompression — it’s complex and delicate work. However, I do worry that the true failure rate may be higher than what's often reported, and that concerns me as I consider my options.
Admittedly, anatomy isn’t my strongest area, and I’d really appreciate your help in understanding how my actions might have led to an actual nerve entrapment. I can clearly see how they could have triggered irritation and hypersensitivity, but the concept of mechanical entrapment is still a bit unclear to me.
Although my current quality of life is limited, I’m still able to function — and for now, I’m hesitant to risk what little life I have for the uncertain possibility of improvement through surgery. Surgery that takes many months to a few years with no guarantee of getting back to even base level of pain.
I have deep respect for the surgeons performing pudendal nerve decompression — it’s complex and delicate work. However, I do worry that the true failure rate may be higher than what's often reported, and that concerns me as I consider my options.
Re: 12 Months in and stuck
I was hoping to hear more from the community and especially I was hoping to get input from Violet about what I should do next. Could I have caused entrapment with my actions? Did you hear of cases triggered by sexual activity leading to nerve decompression?
Re: 12 Months in and stuck
Hi Alex,
I don't know if it is entrapment, and I don't know if the massager could have done it. It may be that it just created a temporary injury that will heal with time. How long have you has it been? Nerves take a long time to heal, so it is useful to try conservative treatments first and to wait to see if it heals on its own. I waited four years before doing surgery (though, in my case, I should, probably, have done it sooner). Yes, Violet is more knowledgeable about all of this, so hopefully she will be able to give you her perspective.
April
I don't know if it is entrapment, and I don't know if the massager could have done it. It may be that it just created a temporary injury that will heal with time. How long have you has it been? Nerves take a long time to heal, so it is useful to try conservative treatments first and to wait to see if it heals on its own. I waited four years before doing surgery (though, in my case, I should, probably, have done it sooner). Yes, Violet is more knowledgeable about all of this, so hopefully she will be able to give you her perspective.
April
Re: 12 Months in and stuck
Thank you for your response April.
I am at 12 months mark with no changes.. I suspect that I had a "sleeping entrapment" because I had some higher sensitivity in this area before and this was a triggering event. Dr. Bautrant explains this possibility in one of his interviews. But of course this is just one of the possibilities.
I feel so devastated that I made myself disabled for life with this. I feel like Ross from Friends: "THEY SHOULD PUT IT ON THE BOX" when it comes to prostate massagers.
I am at 12 months mark with no changes.. I suspect that I had a "sleeping entrapment" because I had some higher sensitivity in this area before and this was a triggering event. Dr. Bautrant explains this possibility in one of his interviews. But of course this is just one of the possibilities.
I feel so devastated that I made myself disabled for life with this. I feel like Ross from Friends: "THEY SHOULD PUT IT ON THE BOX" when it comes to prostate massagers.
Re: 12 Months in and stuck
Hi Alex,
Sorry, I've been MIA due to illness in the family and taking care of lots of family members.
Dr. Bautrant is brilliant and experienced and I think his "triggering event" theory makes sense, based on how so many people who have visited this forum over the years seem to have had a triggering event. Dr. Bautrant also told me that he thinks there can be a genetic component to pudendal nerve issues because he has seen it run in families. So, you can have a genetic predisposition to developing pudendal neuralgia from a nerve entrapment, but you may not develop symptoms unless there is some triggering event such as childbirth for women, or a sports injury, etc. Some people naturally have a tight ligamental grip at the ischial spine and symptoms are triggered by an injury or irritating event and then the nerve can't heal because it is inflamed and can't glide easily between the ligaments. Or as you age (I was 47) the ligaments can become hardened and sclerosed and if the space between the ligaments is a little tight, the nerve can't glide easily, and it won't heal after an injury. I can't say if that's for sure what is going on in your case but it is certainly a possibility. For me, exercise was the trigger and like you, I felt like I did it to myself, so I understand being mad at yourself.
Have you had a pelvic MRI, lumbosacral MRI, or lumbosacral plexus MRI to rule out anything obvious?
PT should help within 6-12 sessions if it's going to help. That's what one of my friends was told by an experienced PN physician. When your PT presses on the pudendal nerve via the rectum, is it tender at the ischial spine or at Alcock's canal? That can be associated with a nerve entrapment. When I first saw Bautrant and he pressed on that area he knew right away that I had a nerve entrapment. I don't know if you have a nerve entrapment, but you have a lot of similarities to what I experienced, including intolerance to internal pelvic floor PT, predominantly unilateral pain, short-term relief from a nerve block, and burning in the perineum.
It's a very difficult decision as to whether to have surgery. I think you have answered your own question about lifestyle changes being the answer -- you have pursued that avenue for 12 months and you are stuck. Only you can decide if your quality of life is bad enough to take the risk of having surgery. For me it was, and I am doing great now. The question for the surgeon would be what the likelihood is of getting worse and whether he sees that happening on a frequent basis. You might even want to get an opinion from more than one surgeon. Some of them will do phone consultations for a reasonable cost -- especially the European doctors who have email addresses in their listings on our website. I know someone who did a phone consultation with Bautrant about a year ago for 300 euros.
Anyway, I haven't really answered your question but I hope some of my brainstorming will give you an idea of what to do next. Wishing you the best,
Violet
Violet
Sorry, I've been MIA due to illness in the family and taking care of lots of family members.
Dr. Bautrant is brilliant and experienced and I think his "triggering event" theory makes sense, based on how so many people who have visited this forum over the years seem to have had a triggering event. Dr. Bautrant also told me that he thinks there can be a genetic component to pudendal nerve issues because he has seen it run in families. So, you can have a genetic predisposition to developing pudendal neuralgia from a nerve entrapment, but you may not develop symptoms unless there is some triggering event such as childbirth for women, or a sports injury, etc. Some people naturally have a tight ligamental grip at the ischial spine and symptoms are triggered by an injury or irritating event and then the nerve can't heal because it is inflamed and can't glide easily between the ligaments. Or as you age (I was 47) the ligaments can become hardened and sclerosed and if the space between the ligaments is a little tight, the nerve can't glide easily, and it won't heal after an injury. I can't say if that's for sure what is going on in your case but it is certainly a possibility. For me, exercise was the trigger and like you, I felt like I did it to myself, so I understand being mad at yourself.
Have you had a pelvic MRI, lumbosacral MRI, or lumbosacral plexus MRI to rule out anything obvious?
PT should help within 6-12 sessions if it's going to help. That's what one of my friends was told by an experienced PN physician. When your PT presses on the pudendal nerve via the rectum, is it tender at the ischial spine or at Alcock's canal? That can be associated with a nerve entrapment. When I first saw Bautrant and he pressed on that area he knew right away that I had a nerve entrapment. I don't know if you have a nerve entrapment, but you have a lot of similarities to what I experienced, including intolerance to internal pelvic floor PT, predominantly unilateral pain, short-term relief from a nerve block, and burning in the perineum.
It's a very difficult decision as to whether to have surgery. I think you have answered your own question about lifestyle changes being the answer -- you have pursued that avenue for 12 months and you are stuck. Only you can decide if your quality of life is bad enough to take the risk of having surgery. For me it was, and I am doing great now. The question for the surgeon would be what the likelihood is of getting worse and whether he sees that happening on a frequent basis. You might even want to get an opinion from more than one surgeon. Some of them will do phone consultations for a reasonable cost -- especially the European doctors who have email addresses in their listings on our website. I know someone who did a phone consultation with Bautrant about a year ago for 300 euros.
Anyway, I haven't really answered your question but I hope some of my brainstorming will give you an idea of what to do next. Wishing you the best,
Violet
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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stephanies
- Posts: 731
- Joined: Mon Oct 25, 2010 3:07 am
Re: 12 Months in and stuck
Hi Alex,
I am sorry you are dealing with this. I think MRIs of the lumbar spine and pelvis/sacrum are a good starting point. Sometimes there is an issue there that can cause PN symptoms and, if so, it is best to identify that before undergoing invasive treatments. Do you have a doctor who will order these for you?
Stephanies
I am sorry you are dealing with this. I think MRIs of the lumbar spine and pelvis/sacrum are a good starting point. Sometimes there is an issue there that can cause PN symptoms and, if so, it is best to identify that before undergoing invasive treatments. Do you have a doctor who will order these for you?
Stephanies
PN started 2004 from fall. Surgery in 2006 and 2007. Pain decreased by 85% in 2009, pain returned worse in 12/13. Pain reduced again in 2023.
Re: 12 Months in and stuck
Hi Stephanies,
Thank you for your response and support.
Please help me understand this:
My PN symptoms started after I inserted foreign object into my rectum and most likely compressed, triggered entrapment or woke up a sleeping entrapment...
Why MRI scan of my spine would be beneficial in your opinion?
Thank you,
Alex
Thank you for your response and support.
Please help me understand this:
My PN symptoms started after I inserted foreign object into my rectum and most likely compressed, triggered entrapment or woke up a sleeping entrapment...
Why MRI scan of my spine would be beneficial in your opinion?
Thank you,
Alex
Re: 12 Months in and stuck
Hi Violet,
Thank you for your answer and words of support. I hope that everyone in your family is doing well now.
I had a regular pelvic MRi and there were no findings. Could you please explain the purpose of the other two MRIs that you mentioned? My injury happened in the first 7-8 cm of my rectum.
Did you also have burning sensation that would last for days after internal pelvic floor work? I experimented and for me even putting a tip of a finger for 10 seconds generates pain and burning for 1-2 days. I am not letting physio anywhere near my rectum as I will be in absolute agony after that, so we did not perform the entrapment tests that you mentioned.
At this point I am also considering surgery because my quality of life is low. I feel a lot of guilt for what this situation has done to my family members. I know that it is a personal and difficult decision for everyone. But when I read surgical stories patients typically are: "Pain 10 out of 10, 24/7, bedridden, unable to walk or stand...". I am on the other side somewhat functional. I can live my life in moderate pain in 15 minute driving radius around my home. Do you know of examples of patients were also functional, but decided to proceed with surgery? Will a surgeon even consider doing a surgery on a functional PN patient?
Thank you,
Alex
Thank you for your answer and words of support. I hope that everyone in your family is doing well now.
I had a regular pelvic MRi and there were no findings. Could you please explain the purpose of the other two MRIs that you mentioned? My injury happened in the first 7-8 cm of my rectum.
Did you also have burning sensation that would last for days after internal pelvic floor work? I experimented and for me even putting a tip of a finger for 10 seconds generates pain and burning for 1-2 days. I am not letting physio anywhere near my rectum as I will be in absolute agony after that, so we did not perform the entrapment tests that you mentioned.
At this point I am also considering surgery because my quality of life is low. I feel a lot of guilt for what this situation has done to my family members. I know that it is a personal and difficult decision for everyone. But when I read surgical stories patients typically are: "Pain 10 out of 10, 24/7, bedridden, unable to walk or stand...". I am on the other side somewhat functional. I can live my life in moderate pain in 15 minute driving radius around my home. Do you know of examples of patients were also functional, but decided to proceed with surgery? Will a surgeon even consider doing a surgery on a functional PN patient?
Thank you,
Alex