Hi everyone,
I'm 12 months post surgery with Dr. Mark Conway from Nashua, NH.
What's better:
1) More sensitivity in my genitals
2) Stronger erections
3) If I don't sit sexual functioning seems to be almost normal
4) Better urine flow and better bowel movements
5) I have more pain which in my opinion indicates that the nerve is ''waking up'' and this started only 3-4 weeks ago at month #11. Never really felt pain before mostly just numbness.
What's not improved:
1) Still numbness in my genitals, improved but still significant. When I lie down in bed and my head turns left I get more numbness as if it pulls still. I suspect re-entrapment or scar tissue.
2) When I sit the issue seems to be the same as prior to surgery. I still cannot sit without almost immediate numbness in my genitals. Also pain if I sit more than 5 minutes.
3) If I don't masturbate for 48 hours, more pain and pressure in the pudendal nerve area.
My worry is that if I wait another year and the scar tissue become fibrosis the results from 2nd surgery become less good.
I tried contacting Dr. Bautrant from France twice by email but never got a reply. Dr. Mark Conway told me 3 months ago to still wait and see.
Anybody tried to contact Dr. Bautrant at : ebautrant@l-avancee.fr & chir.gyneco@l-avancee.fr?
Also I know none of you are doctors I suppose but what is your opinion or advice for those who did the surgery and had numbness prior to surgery?
Thanks
Post-Surgery 12 months later
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romotronco88
- Posts: 20
- Joined: Wed Aug 23, 2023 1:50 am
Re: Post-Surgery 12 months later
Cheers to you Brian for having the courage to go for surgery, and thanks for sharing your story here.
This condition is a doozy; what an unholy mix of mind and body. I wouldn't wish it on my worse enemy.
I've consulted with Conway a few times; I'm 2.5 years out from what should have been a minor injury that caused symptoms of pudendal neuropathy. The good news: I can perform, get strong erections on demand, and have shown some pretty good signs of improvement, feeling 80 pct sensation maybe 25% of the time, although it's a bit unpredictable. BMs and urination have improved in function to close to normal. I believe I am still healing, and working for more. The bad news: sensation, both before and during sex, and libido are still harder to come by than I'd like. There is something blocked or muted down there; it's weird. I really miss the mental aspect of feeling / desire too.
Our experiences are different, but I say this only to relate to the confusing zone you may be in now, experiencing some legit improvements, while wanting and worrying about more. I will say my experience has shown me that there is a mental/nervous system aspect to this that is nearly equal to the physical one. The fact that your body has shown up to me indicates that you have something to work with. But how's your mind and anxiety? And can you start having a slightly more enjoyable existence inside of your body? That will help your nerves, nervous system, muscles, everything get right. for me, I do a near daily sauna and lots of lap swimming. for you it could be something different. I'm a parent with young kids too.
This condition is a doozy; what an unholy mix of mind and body. I wouldn't wish it on my worse enemy.
I've consulted with Conway a few times; I'm 2.5 years out from what should have been a minor injury that caused symptoms of pudendal neuropathy. The good news: I can perform, get strong erections on demand, and have shown some pretty good signs of improvement, feeling 80 pct sensation maybe 25% of the time, although it's a bit unpredictable. BMs and urination have improved in function to close to normal. I believe I am still healing, and working for more. The bad news: sensation, both before and during sex, and libido are still harder to come by than I'd like. There is something blocked or muted down there; it's weird. I really miss the mental aspect of feeling / desire too.
Our experiences are different, but I say this only to relate to the confusing zone you may be in now, experiencing some legit improvements, while wanting and worrying about more. I will say my experience has shown me that there is a mental/nervous system aspect to this that is nearly equal to the physical one. The fact that your body has shown up to me indicates that you have something to work with. But how's your mind and anxiety? And can you start having a slightly more enjoyable existence inside of your body? That will help your nerves, nervous system, muscles, everything get right. for me, I do a near daily sauna and lots of lap swimming. for you it could be something different. I'm a parent with young kids too.
Re: Post-Surgery 12 months later
Thanks for your feedback.
So Dr. Conway didn't advise you to do the surgery or you did it? Not sure I understood.
Of course I'm a bit worried but it seems to go back to normal so it reassures me. When I sit and it gets numb, the time it takes to go back to default is a lot shorter than before. So I get the feeling that within the next 12 months things will be even better. Also the fact that I started feeling pain for the first time at month #11 post-surgery also indicates that the nerve regenerated and sends pain signals.
So Dr. Conway didn't advise you to do the surgery or you did it? Not sure I understood.
Of course I'm a bit worried but it seems to go back to normal so it reassures me. When I sit and it gets numb, the time it takes to go back to default is a lot shorter than before. So I get the feeling that within the next 12 months things will be even better. Also the fact that I started feeling pain for the first time at month #11 post-surgery also indicates that the nerve regenerated and sends pain signals.
Re: Post-Surgery 12 months later
Hello Brian,
It is hard to predict what the final outcome will be for you, but it is common to have some increase in pain for a few months as the nerve is waking up. I wasn't really able to sit much until 18 months post-op, and there are some people who continue to show improvements as long as 3 years after surgery. So, I wouldn't draw any final conclusions yet, but I can understand that it is really difficult to wait while you are hoping for things to improve. Some of the things I tried while waiting for things to heal were hyperbaric oxygen and alternating hot/cold sitz baths. There is some literature that supports the role of hyperbaric oxygen in the healing of nerves, but that would most likely not help if the nerve is entrapped. Since you had surgery, hopefully it is not entrapped in scar tissue. You could potentially do the Hollis Potter protocol for an MRI of the pelvis to see if there is any obvious scar tissue post-op. I'm not sure what the treatement for that would be -- scar tissue is tough to deal with.
Those email addresses you posted for Dr. Bautrant are the same as the ones we have for him. Sometimes he is on travel and takes longer to get to his emails so, I don't know, maybe that's what is going on. You could try again several weeks after the previous email.
Violet
It is hard to predict what the final outcome will be for you, but it is common to have some increase in pain for a few months as the nerve is waking up. I wasn't really able to sit much until 18 months post-op, and there are some people who continue to show improvements as long as 3 years after surgery. So, I wouldn't draw any final conclusions yet, but I can understand that it is really difficult to wait while you are hoping for things to improve. Some of the things I tried while waiting for things to heal were hyperbaric oxygen and alternating hot/cold sitz baths. There is some literature that supports the role of hyperbaric oxygen in the healing of nerves, but that would most likely not help if the nerve is entrapped. Since you had surgery, hopefully it is not entrapped in scar tissue. You could potentially do the Hollis Potter protocol for an MRI of the pelvis to see if there is any obvious scar tissue post-op. I'm not sure what the treatement for that would be -- scar tissue is tough to deal with.
Those email addresses you posted for Dr. Bautrant are the same as the ones we have for him. Sometimes he is on travel and takes longer to get to his emails so, I don't know, maybe that's what is going on. You could try again several weeks after the previous email.
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: Post-Surgery 12 months later
Hello Brian,
It good to read that some issues that have improved for you after surgery. The increase in numbness with turning your head is perplexing for a pelvic issue would lead me to consult with a neurologist/neurosurgeon and request a full spine MRIs to see if there’s a spine issue contributing to your symptoms since a turn in your cervical spine affects your pelvis and because numbness is a concerning problem. I hope you keep healing and improving as time goes by.
Stephanies
It good to read that some issues that have improved for you after surgery. The increase in numbness with turning your head is perplexing for a pelvic issue would lead me to consult with a neurologist/neurosurgeon and request a full spine MRIs to see if there’s a spine issue contributing to your symptoms since a turn in your cervical spine affects your pelvis and because numbness is a concerning problem. I hope you keep healing and improving as time goes by.
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: Post-Surgery 12 months later
Here's my update about four months later:
In the past two months I thought I noticed significant improvement but not in the sitting area. In mid-December I developed ankle pain and problems with my feet for standing for so long for the past 3.5 years. So, I've been lying down for the past two months pretty much 24/7 on my back due to not be able to walk properly without crutches and not being able to sit.
Lately things have been getting worse with bladder getting less sensation weak urine stream and the quality of stools has gone back to pre surgery. So, I believe I'm going in the wrong direction. But what's very frustrating is that in the past 2-3 weeks I was getting glimpses of normal functioning and normal sensation. I'm very puzzled and I feel like maybe it's because in my lumbar area, I’ve been getting a lot of pain from lying down too much which switched to numbness in the lower back. My immobility I believe is making things worse because there's not much blood flow going on and my pelvic floor is being deconditioned the longer I stay inactive. I had a MRI done and all is good for my spine.
Also what I got one day this week or during an evening is extreme pain on my left side in the pudendal area which is something I've never felt before. But as soon as I moved in a position that is not ideal that pain vanished to be replaced by numbness.
I contacted doctor Mark Conway who did my surgery and just sent him an urgent message for him to get back to me to advise me. I also booked an appointment with doctor Bautrant but it's only in March 2027. I also just left a message to Doctor Hibner in Arizona because I read that he does a lot of revision surgeries. Also, next week on Wednesday I'm seeing an anesthesiologist that specializes in pudendal neuralgia and that will perform hydrodissection most likely.
So, I'm pretty much going all in and trying my best to hopefully get a second surgery or get some relief. But what's the main frustration is that I know the nerve can function underneath I know it's there because it's giving me glimpses of normal functioning every now and then and I've had sex with my wife this week and my erection was strong the sensation was better which is extremely confusing. But when I had sex with her, I was really lying down on my right side which is a position I found that relieves my pudendal nerve the most. (sorry for the details)
Now I'm debating to see if a revision surgery would be better with doctor Hibner or doctor Bautrant because they use a different technique. Doctor Hibner uses the good old trans gluteal technique, but doctor Bautrant has a new technique which is with laparoscopic tool called Transischio-rectal fossa approach. I read also that the trans gluteal technique reaches more directly the pudendal area than the other technique.
Any productive feedback or insight is welcome. I'm extremely solution focused and I hope I get this issue fixed.
In the past two months I thought I noticed significant improvement but not in the sitting area. In mid-December I developed ankle pain and problems with my feet for standing for so long for the past 3.5 years. So, I've been lying down for the past two months pretty much 24/7 on my back due to not be able to walk properly without crutches and not being able to sit.
Lately things have been getting worse with bladder getting less sensation weak urine stream and the quality of stools has gone back to pre surgery. So, I believe I'm going in the wrong direction. But what's very frustrating is that in the past 2-3 weeks I was getting glimpses of normal functioning and normal sensation. I'm very puzzled and I feel like maybe it's because in my lumbar area, I’ve been getting a lot of pain from lying down too much which switched to numbness in the lower back. My immobility I believe is making things worse because there's not much blood flow going on and my pelvic floor is being deconditioned the longer I stay inactive. I had a MRI done and all is good for my spine.
Also what I got one day this week or during an evening is extreme pain on my left side in the pudendal area which is something I've never felt before. But as soon as I moved in a position that is not ideal that pain vanished to be replaced by numbness.
I contacted doctor Mark Conway who did my surgery and just sent him an urgent message for him to get back to me to advise me. I also booked an appointment with doctor Bautrant but it's only in March 2027. I also just left a message to Doctor Hibner in Arizona because I read that he does a lot of revision surgeries. Also, next week on Wednesday I'm seeing an anesthesiologist that specializes in pudendal neuralgia and that will perform hydrodissection most likely.
So, I'm pretty much going all in and trying my best to hopefully get a second surgery or get some relief. But what's the main frustration is that I know the nerve can function underneath I know it's there because it's giving me glimpses of normal functioning every now and then and I've had sex with my wife this week and my erection was strong the sensation was better which is extremely confusing. But when I had sex with her, I was really lying down on my right side which is a position I found that relieves my pudendal nerve the most. (sorry for the details)
Now I'm debating to see if a revision surgery would be better with doctor Hibner or doctor Bautrant because they use a different technique. Doctor Hibner uses the good old trans gluteal technique, but doctor Bautrant has a new technique which is with laparoscopic tool called Transischio-rectal fossa approach. I read also that the trans gluteal technique reaches more directly the pudendal area than the other technique.
Any productive feedback or insight is welcome. I'm extremely solution focused and I hope I get this issue fixed.
Re: Post-Surgery 12 months later
Hi Brian,
That does sound confusing. But I do think that inexplicable pain fluctuations are common with this problem---I certainly have that. So you developed ankle pain from standing a lot so you started lying down almost all the time. You said you thought you were getting better in the past 2-3 weeks, but that you also thought your immobility was making it worse? Are you thinking your immobility explains that pain on your side? Do you think you are better than you were before your surgery? I tried to think big picture when assessing my pain progress after my surgery---not am I better than last month but am I better than last year---so I could try to see the bigger picture with my progress (but that was hard to do).
I mention that because I had many pain fluctuations after my surgery. My pain was much better at first and then I had a setback in couple months (which devastated me)---the pain wasn't like before the surgery but it had increased. I don't know why---I think it's possible that a small part of the nerve re-entrapped with the scar tissue and I think I could still have that. But over the next few years it very gradually declined with lots of ups and downs. In 18 months I was off of all my meds---that was wonderful-- and I managed my pain with just ice and heating pads. And today (7 years later) I manage it with only a heating pad that I use rarely. So, that is a long-winded way of saying that the path to recovery is often slow. But, I can also see the benefits of learning about the possibilities of getting another surgery.
Let us know what Conway and the other doctors think is going on.
Take care,
April
That does sound confusing. But I do think that inexplicable pain fluctuations are common with this problem---I certainly have that. So you developed ankle pain from standing a lot so you started lying down almost all the time. You said you thought you were getting better in the past 2-3 weeks, but that you also thought your immobility was making it worse? Are you thinking your immobility explains that pain on your side? Do you think you are better than you were before your surgery? I tried to think big picture when assessing my pain progress after my surgery---not am I better than last month but am I better than last year---so I could try to see the bigger picture with my progress (but that was hard to do).
I mention that because I had many pain fluctuations after my surgery. My pain was much better at first and then I had a setback in couple months (which devastated me)---the pain wasn't like before the surgery but it had increased. I don't know why---I think it's possible that a small part of the nerve re-entrapped with the scar tissue and I think I could still have that. But over the next few years it very gradually declined with lots of ups and downs. In 18 months I was off of all my meds---that was wonderful-- and I managed my pain with just ice and heating pads. And today (7 years later) I manage it with only a heating pad that I use rarely. So, that is a long-winded way of saying that the path to recovery is often slow. But, I can also see the benefits of learning about the possibilities of getting another surgery.
Let us know what Conway and the other doctors think is going on.
Take care,
April
Re: Post-Surgery 12 months later
I had redo surgery with Hibner and it was a failure. Re entrapped with scar tissue.
Re: Post-Surgery 12 months later
1 year waiting time for a consult ?? For ppl in our sittuation is pathetic.i am 100 % sure no one is so full.....Brian9113 wrote: ↑Fri Mar 06, 2026 5:29 pm Here's my update about four months later:
In the past two months I thought I noticed significant improvement but not in the sitting area. In mid-December I developed ankle pain and problems with my feet for standing for so long for the past 3.5 years. So, I've been lying down for the past two months pretty much 24/7 on my back due to not be able to walk properly without crutches and not being able to sit.
Lately things have been getting worse with bladder getting less sensation weak urine stream and the quality of stools has gone back to pre surgery. So, I believe I'm going in the wrong direction. But what's very frustrating is that in the past 2-3 weeks I was getting glimpses of normal functioning and normal sensation. I'm very puzzled and I feel like maybe it's because in my lumbar area, I’ve been getting a lot of pain from lying down too much which switched to numbness in the lower back. My immobility I believe is making things worse because there's not much blood flow going on and my pelvic floor is being deconditioned the longer I stay inactive. I had a MRI done and all is good for my spine.
Also what I got one day this week or during an evening is extreme pain on my left side in the pudendal area which is something I've never felt before. But as soon as I moved in a position that is not ideal that pain vanished to be replaced by numbness.
I contacted doctor Mark Conway who did my surgery and just sent him an urgent message for him to get back to me to advise me. I also booked an appointment with doctor Bautrant but it's only in March 2027. I also just left a message to Doctor Hibner in Arizona because I read that he does a lot of revision surgeries. Also, next week on Wednesday I'm seeing an anesthesiologist that specializes in pudendal neuralgia and that will perform hydrodissection most likely.
So, I'm pretty much going all in and trying my best to hopefully get a second surgery or get some relief. But what's the main frustration is that I know the nerve can function underneath I know it's there because it's giving me glimpses of normal functioning every now and then and I've had sex with my wife this week and my erection was strong the sensation was better which is extremely confusing. But when I had sex with her, I was really lying down on my right side which is a position I found that relieves my pudendal nerve the most. (sorry for the details)
Now I'm debating to see if a revision surgery would be better with doctor Hibner or doctor Bautrant because they use a different technique. Doctor Hibner uses the good old trans gluteal technique, but doctor Bautrant has a new technique which is with laparoscopic tool called Transischio-rectal fossa approach. I read also that the trans gluteal technique reaches more directly the pudendal area than the other technique.
Any productive feedback or insight is welcome. I'm extremely solution focused and I hope I get this issue fixed.