Violet,
Just a quick question for you.. did you have piriformis syndrome and did your surgery address it at all?
Thanks!
Young male with terrible sexual/urinary issues. PNE?
Re: Young male with terrible sexual/urinary issues. PNE?
Yes, I had piriformis syndrome on the right side which was the same side as my PNE pain. The symptoms were a nagging pain/numbness in the right buttock that went down the right leg into my foot. It felt like what I would guess sciatica feels like. Once the PN pain started to subside after surgery, I used a TENS unit for the piriformis muscle and the piriformis syndrome slowly went away on the right side.
Occasionally I get that same numb feeling in the buttocks on the left side now, but it's only if I sit a lot and don't get to exercise. I will probably always have bad ligaments and sacroiliac joint dysfunction so I have to avoid certain activities like jogging. I can hike in the mountains and do cadio with light weights but I can't jog or do heavy weights. Instead of jogging, I walk with a weight vest on and carry light hand weights to get my heart rate up. It's not as jarring as jogging but I feel like it actually tones muscles better than jogging and is easier on ligaments/joints.
Violet
Occasionally I get that same numb feeling in the buttocks on the left side now, but it's only if I sit a lot and don't get to exercise. I will probably always have bad ligaments and sacroiliac joint dysfunction so I have to avoid certain activities like jogging. I can hike in the mountains and do cadio with light weights but I can't jog or do heavy weights. Instead of jogging, I walk with a weight vest on and carry light hand weights to get my heart rate up. It's not as jarring as jogging but I feel like it actually tones muscles better than jogging and is easier on ligaments/joints.
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.
Re: Young male with terrible sexual/urinary issues. PNE?
Posting an update with a lot of good info.
I got my MRN back from Dr. Potter in New York.
FINDINGS:
There is no presacral soft tissue mass. Postsurgical changes are noted in the inferior margin of the sacrum towards the right aspect of the S3 and S4 foramina, as seen on series 5 image 81. The lumbosacral trunks appear symmetric. The sciatic nerves do not pierce the piriformis muscle.
The sacrospinous and sacrotuberous ligaments appear symmetric without scar encasement. There is an intact fat plane surrounding the pudendal nerves as they extend into Alcock's canal, as seen on series 8 images 33-47. The ischial rectal fat is unremarkable. The anococcygeal ligament is preserved. The coccygeus muscle appears symmetric. The superficial transverse perineal muscle is preserved. There are pelvic varices surrounding the lower prostate, extending to the inferior margin of the anteroinferior margin of the pelvic floor, as seen on series 10 images 46-56. These are largely located above the pudendal nerves in Alcock's canal. The bulbospongiosus and ischial cavernosus muscles appear symmetric. No intramuscular varices are appreciated. The dorsal nerves to the penis appear symmetric, noted on series 8 image 27. No varices are seen to course with the nerves. Anteriorly, the inguinal canals appear symmetric. No varicocele formation is appreciated.
The pubic symphysis appear symmetric without dehiscence of the adductor origins. Hamstrings are unremarkable. There is no pelvic adenopathy. There is insufficient offset of the anterier neck head junctions of both hip joints, with features of femoral acetabular impingement.
IMPRESSION:
MRI of the pelvis demonstrates no scar entrapment of the pudendal nerves within the visualized field-of-view. There are varices surrounding the lower prostate but without direct impact on the course of the pudendal nerves. The dorsal nerves to the penis appear symmetric.
So basically I'm pretty sure these varices are causing my symptoms. I've preached a lot over the past year and a half to doctors that it feels like a blood issue but all of the dismissed this idea and said it's impossible. My symptoms are just extreme "congestion" and feels like some kind of backflow during sexual activity or urinating.
Immediately after Dr. Marvel received these results he set me up with Dr. Singh at John's Hopkins Radiology for embolization procedure. Unfortunately, no embolization was done since the team of docs said they could not get to the area where the varices were located, and the venogram showed that all other veins were fine, and that these varices should not be a problem. I cannot accept this since I know my symptoms well and know what I'm feeling. I'm still very certain these varices are my exact problem.
I have begun calling vein centers around the country and sending my Potter MRI report and pictures, trying to find someone who could treat these veins.
My very important question: is there any specific doctor who can do this procedure and has done it before? I am willing to travel anywhere in the United States.
Thank you for your responses.
I got my MRN back from Dr. Potter in New York.
FINDINGS:
There is no presacral soft tissue mass. Postsurgical changes are noted in the inferior margin of the sacrum towards the right aspect of the S3 and S4 foramina, as seen on series 5 image 81. The lumbosacral trunks appear symmetric. The sciatic nerves do not pierce the piriformis muscle.
The sacrospinous and sacrotuberous ligaments appear symmetric without scar encasement. There is an intact fat plane surrounding the pudendal nerves as they extend into Alcock's canal, as seen on series 8 images 33-47. The ischial rectal fat is unremarkable. The anococcygeal ligament is preserved. The coccygeus muscle appears symmetric. The superficial transverse perineal muscle is preserved. There are pelvic varices surrounding the lower prostate, extending to the inferior margin of the anteroinferior margin of the pelvic floor, as seen on series 10 images 46-56. These are largely located above the pudendal nerves in Alcock's canal. The bulbospongiosus and ischial cavernosus muscles appear symmetric. No intramuscular varices are appreciated. The dorsal nerves to the penis appear symmetric, noted on series 8 image 27. No varices are seen to course with the nerves. Anteriorly, the inguinal canals appear symmetric. No varicocele formation is appreciated.
The pubic symphysis appear symmetric without dehiscence of the adductor origins. Hamstrings are unremarkable. There is no pelvic adenopathy. There is insufficient offset of the anterier neck head junctions of both hip joints, with features of femoral acetabular impingement.
IMPRESSION:
MRI of the pelvis demonstrates no scar entrapment of the pudendal nerves within the visualized field-of-view. There are varices surrounding the lower prostate but without direct impact on the course of the pudendal nerves. The dorsal nerves to the penis appear symmetric.
So basically I'm pretty sure these varices are causing my symptoms. I've preached a lot over the past year and a half to doctors that it feels like a blood issue but all of the dismissed this idea and said it's impossible. My symptoms are just extreme "congestion" and feels like some kind of backflow during sexual activity or urinating.
Immediately after Dr. Marvel received these results he set me up with Dr. Singh at John's Hopkins Radiology for embolization procedure. Unfortunately, no embolization was done since the team of docs said they could not get to the area where the varices were located, and the venogram showed that all other veins were fine, and that these varices should not be a problem. I cannot accept this since I know my symptoms well and know what I'm feeling. I'm still very certain these varices are my exact problem.
I have begun calling vein centers around the country and sending my Potter MRI report and pictures, trying to find someone who could treat these veins.
My very important question: is there any specific doctor who can do this procedure and has done it before? I am willing to travel anywhere in the United States.
Thank you for your responses.
Re: Young male with terrible sexual/urinary issues. PNE?
Hi Allan T,
So the MRI and the venogram are separate tests, right? And the MRI suggests the veins may be impinging on the nerve, but the venogram showed no problems? If so, it's possible that other doctors would also be reluctant to proceed given the venogram results, but it definitely makes sense to get a second opinion. If you do decide to get the procedure done, I think---if this is what I think it is---it is done other places. Before my MRI came back, Dr. Hibner talked to me about this possibility since I have an increase in pain when I move from lying down to an upright position. (Once I looked up the details on this problem, I was pretty sure I didn't have it since I don't have any of the risk factors for it.) As I suspected, my MRI did not show I had this problem, but based on Hibner's discussion, it sounded like there were specialists in Phoenix who do this---possibly at the same hospital. So you could try a doctor at his hospital.
April
So the MRI and the venogram are separate tests, right? And the MRI suggests the veins may be impinging on the nerve, but the venogram showed no problems? If so, it's possible that other doctors would also be reluctant to proceed given the venogram results, but it definitely makes sense to get a second opinion. If you do decide to get the procedure done, I think---if this is what I think it is---it is done other places. Before my MRI came back, Dr. Hibner talked to me about this possibility since I have an increase in pain when I move from lying down to an upright position. (Once I looked up the details on this problem, I was pretty sure I didn't have it since I don't have any of the risk factors for it.) As I suspected, my MRI did not show I had this problem, but based on Hibner's discussion, it sounded like there were specialists in Phoenix who do this---possibly at the same hospital. So you could try a doctor at his hospital.
April
Re: Young male with terrible sexual/urinary issues. PNE?
April, thank you for the reply. Yes the venogram was scheduled after I got the MRI results. I think the MRI suggests that the varices don't have any impact on the nerves. I don't have any actual nerve pain, just severe congestion feelings which is kind of like "pgad". My theory here is the varices themselves are causing some kind of backflow.. I am not really sure what exactly happened with the venogram.. I just had it done two days ago, and everything that was discussed with me was immediately after the procedure while I was still woozy from the drugs so I don't remember it well. I just remember that he said they didn't get to the veins and that they tested flow everywhere and it all looked good. The whole thing is just confusing, I just don't know what else could be causing these symptoms for me.
Re: Young male with terrible sexual/urinary issues. PNE?
Hi Allan,
I remember a woman who had an MRI that showed a backflow of blood in the blood vessels and she had PGAD. The backflow of blood was caused due to an entrapment of the pudendal nerve and the blood vessels, causing the blood vessels to appear engorged because of the backflow. So I guess one question for you to consider is whether the backflow of blood in the veins in Alcock's canal could be due to something putting pressure on the veins or whether it is truly varicose veins. It seems odd that all of the surrounding veins are just fine but in that little section you have varices. Also, I'm not sure if they mean varicose veins that are enlarged and twisted like you typically think of with varices as you get older or do they just mean enlarged veins that could be associated with increased blood flow.
Your MRI says the varices are above the pudendal nerves in Alcock's canal. Since the pudendal nerves go through Alcock's canal and the MRI says the varices are in Alcock's canal then if something was restricting the blood vessels in Alcock's canal it would also be pinching the nerves. This is just my brainstorming here and I could be wrong. What is confusing about the MRI is that is says "no varices are seen to course with the nerves." But that statement comes right after it talks about the dorsal penile nerves so it could be referring just to the dorsal branches of the nerves. I don't know if you can get that clarified by the radiologist who wrote the MRI report. But it doesn't make sense to say that there are varices in Alcock's canal and then say no varices are seen to course with the nerves in Alcock's canal because the pudendal nerve runs through Alcock's canal. It's not a very long canal and it's a tight space so I'm just trying to make sense of what this radiologist said.
For me, the falciform process of the ST ligament where it attaches to the ischial tuberosity (the sit bone) was impinging on the nerve. I never had an MRI of that area so I don't know if there was any backflow of blood in the veins but I did have a congested PGAD feeling very similar to what you describe. I also had tight pelvic floor muscles and urinary symptoms similar to what you describe. When Dr. Bautrant did my surgery he shaved away some of the falciform process of the ST ligament. He also cut the SS ligaments so I can't say for sure whether shaving the falciform process of the ST ligament or cutting the SS ligaments got rid of my PGAD symptoms but I am basically cured of PGAD now.
Anyway, I hate to over-think this but am just trying to brainstorm possibilities.
Violet
I remember a woman who had an MRI that showed a backflow of blood in the blood vessels and she had PGAD. The backflow of blood was caused due to an entrapment of the pudendal nerve and the blood vessels, causing the blood vessels to appear engorged because of the backflow. So I guess one question for you to consider is whether the backflow of blood in the veins in Alcock's canal could be due to something putting pressure on the veins or whether it is truly varicose veins. It seems odd that all of the surrounding veins are just fine but in that little section you have varices. Also, I'm not sure if they mean varicose veins that are enlarged and twisted like you typically think of with varices as you get older or do they just mean enlarged veins that could be associated with increased blood flow.
Your MRI says the varices are above the pudendal nerves in Alcock's canal. Since the pudendal nerves go through Alcock's canal and the MRI says the varices are in Alcock's canal then if something was restricting the blood vessels in Alcock's canal it would also be pinching the nerves. This is just my brainstorming here and I could be wrong. What is confusing about the MRI is that is says "no varices are seen to course with the nerves." But that statement comes right after it talks about the dorsal penile nerves so it could be referring just to the dorsal branches of the nerves. I don't know if you can get that clarified by the radiologist who wrote the MRI report. But it doesn't make sense to say that there are varices in Alcock's canal and then say no varices are seen to course with the nerves in Alcock's canal because the pudendal nerve runs through Alcock's canal. It's not a very long canal and it's a tight space so I'm just trying to make sense of what this radiologist said.
For me, the falciform process of the ST ligament where it attaches to the ischial tuberosity (the sit bone) was impinging on the nerve. I never had an MRI of that area so I don't know if there was any backflow of blood in the veins but I did have a congested PGAD feeling very similar to what you describe. I also had tight pelvic floor muscles and urinary symptoms similar to what you describe. When Dr. Bautrant did my surgery he shaved away some of the falciform process of the ST ligament. He also cut the SS ligaments so I can't say for sure whether shaving the falciform process of the ST ligament or cutting the SS ligaments got rid of my PGAD symptoms but I am basically cured of PGAD now.
Anyway, I hate to over-think this but am just trying to brainstorm possibilities.
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.
Re: Young male with terrible sexual/urinary issues. PNE?
I had PGAD really bad last year and effexor almost completely took it away. I still get it every now and then (mainly triggered by arousal or by things that cause increase in PN pain) but it only stays for a couple minutes.
Re: Young male with terrible sexual/urinary issues. PNE?
I suppose it makes sense that something is impinging the vessels. Honestly this is probably more likely since I do still consistently have this "pinching" feeling on the right side of where I think alcock's canal is located.. deep inside my buttock, closer to the middle, but on the right side. My biggest concern still is who is the best person to see about this. I'm seriously having the hardest time with doctors because no one knows what to do with me and I just keep getting passed on.
Re: Young male with terrible sexual/urinary issues. PNE?
Allan,
Can your pelvic floor PT help you figure out where that pinching feeling is coming from on the right? When my PT and Dr. Bautrant did an exam they were able to put their finger right on Alcock's canal and right on the ischial spine. These were problem areas for me. If they are problem areas for you, it might be best to see a PN specialist.
Deciding who to see is always a challenge. It depends partly on whether you have exhausted conservative treatment options, whether you want to go the route of managing the symptoms with drugs and symptom relief measures such as neurostimulation, or whether you want to try the route of a series of nerve blocks to isolate whether it is the pudendal nerve and if it is, whether you want to try the surgery route. I was desperate enough that I opted for the nerve blocks and surgery when conservative therapies didn't work. Who to see also depends on where you live and whether you are able to travel. Many of the specialists are listed on the pudendalhope.org website under doctors in the left-hand menu. You can put their names into the search bar on this forum and see what other people have posted about them. When you aren't feeling well it's even more difficult to make decisions on what to do. Maybe a friend or family member can help you make a list of the pros and cons of each choice. Sometimes that helps you think more clearly about it. You sound like a smart guy and I'm sure you will figure it out.
Hey Cade, glad to hear you are doing better.
Violet
Can your pelvic floor PT help you figure out where that pinching feeling is coming from on the right? When my PT and Dr. Bautrant did an exam they were able to put their finger right on Alcock's canal and right on the ischial spine. These were problem areas for me. If they are problem areas for you, it might be best to see a PN specialist.
Deciding who to see is always a challenge. It depends partly on whether you have exhausted conservative treatment options, whether you want to go the route of managing the symptoms with drugs and symptom relief measures such as neurostimulation, or whether you want to try the route of a series of nerve blocks to isolate whether it is the pudendal nerve and if it is, whether you want to try the surgery route. I was desperate enough that I opted for the nerve blocks and surgery when conservative therapies didn't work. Who to see also depends on where you live and whether you are able to travel. Many of the specialists are listed on the pudendalhope.org website under doctors in the left-hand menu. You can put their names into the search bar on this forum and see what other people have posted about them. When you aren't feeling well it's even more difficult to make decisions on what to do. Maybe a friend or family member can help you make a list of the pros and cons of each choice. Sometimes that helps you think more clearly about it. You sound like a smart guy and I'm sure you will figure it out.
Hey Cade, glad to hear you are doing better.
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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winged_cent
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Re: Young male with terrible sexual/urinary issues. PNE?
Hi Allan,
I recently did an MRI at Hospital for Special Surgery, which was basically normal except for the following finding:
"There are very prominent varices noted posterior to the pubic symphysis and surrounding the inferior margin of the prostate. Varices extend into the Alcock's canal, left greater than right."
I have mostly left-sided symptoms affecting the perineal and dorsal branches of the pudendal nerve (no rectal nerve symptoms), and have already tried everything except PN decompression surgery. The same MRI notes that the sacrospinous and sacrotuberous ligaments are normal and that there is no sign of scarring or compression at the interligamentary clamp.
I sent the MRI CD to Dr. Aszmann in Vienna and am waiting to hear back from him as to what he thinks. I've read a number of older posts here with varying perspectives as to whether the nerve can be compressed by varices, or if the varices are more likely to be caused by nerve compression in the first place.
At any rate, 99% of what is online about pelvic congestion syndrome is addressed to women and discusses the ovarian vein. Allan, were you able to find any doctor who does vein embolization of this sort for men? Does anyone else know any US-based doctor who would be appropriate to see?
I recently did an MRI at Hospital for Special Surgery, which was basically normal except for the following finding:
"There are very prominent varices noted posterior to the pubic symphysis and surrounding the inferior margin of the prostate. Varices extend into the Alcock's canal, left greater than right."
I have mostly left-sided symptoms affecting the perineal and dorsal branches of the pudendal nerve (no rectal nerve symptoms), and have already tried everything except PN decompression surgery. The same MRI notes that the sacrospinous and sacrotuberous ligaments are normal and that there is no sign of scarring or compression at the interligamentary clamp.
I sent the MRI CD to Dr. Aszmann in Vienna and am waiting to hear back from him as to what he thinks. I've read a number of older posts here with varying perspectives as to whether the nerve can be compressed by varices, or if the varices are more likely to be caused by nerve compression in the first place.
At any rate, 99% of what is online about pelvic congestion syndrome is addressed to women and discusses the ovarian vein. Allan, were you able to find any doctor who does vein embolization of this sort for men? Does anyone else know any US-based doctor who would be appropriate to see?