Health Organization for Pudendal Education

Hello all, first post here after visiting on and off for a few months. I hope it is not too lengthy but I want to try to cover at least the basics of everything. I am sorry that everyone is brought together under the unfortunate circumstances but at least the group seems to be offering help and support to visitors which is great.

I've been going around in circles trying to find resolution for a condition that has persisted for some time. I am a male, early thirties, otherwise healthy. My chief complaint is that I experience a bilateral (equal on both sides) burning sensation in the general area of my groin, the inner thighs, buttocks, and the back of the legs approximately down to the knees. This burning occurs more or less at all times but is aggravated when the buttocks and legs are in contact with a surface -- e.g., when I am sitting in a chair, or laying down on my back. Sitting is much worse to the point that if I am not sitting on a cushion it gets unbearable after awhile. I have an "ice pack cushion" which can be cooled down in the fridge over night that I use to sit on. If I sit down on this, I more or less don't even notice the burning feeling. But, of course, I can't use that at all times. An example is a conference I had to attend where I was seated all day long, and the burning feeling in the back of my thighs just became unbearable by midday. If I were sitting and I stood up and, say, knelt down on my knees for 10-15 minutes, the burning feeling in the legs would more or less disappear. It generally feels "warm" in the immediate area of the groin at all times, but I think this may be due to the fact that the inner thighs are essentially in contact with that area, and thus "warming" it up constantly with no chance to "cool off" like the back of my legs would do if I were standing or kneeling.

I do not characterize the burning as necessarily "painful" in the sense that it does not cause acute pain. It is essentially just quite uncomfortable and gets worse and worse the longer that I sit down. It is bothersome because the skin gets very hot. I can't really compare it to anything and unfortunately can't describe it any better. It's not "sitting on a stove burner" hot, but it sometimes feels like it's getting into that neighborhood!

From reading about PN/E symptoms and the conditions in general, I do not have any sexual or urinary problems, or any issues with bowel control. Sitting on a donut cushion does not seem to help at all. Sitting on the toilet does seem to relieve the burning as near as I can tell, although since the toilet seat is generally cold, that may be part of it.

I have been diagnosed with pelvic floor dysfunction as the muscles in the area are significantly contracted to the point where they are extremely tight and are going into spasm. I also have general tightness in seemingly all other nearby muscles, such as the Piriformis, glute muscles, hamstrings, etc. This may have developed in part due to chronic sitting at work for very long periods of time and also weightlifting routines emphasizing squatting motions.

It seems at least possible that these tight and/or spastic muscles are the root cause of my issue. What I do not understand at this point is necessarily the "why"; that is, why would tightened muscles cause the overall burning feeling? And then it is a matter of how to loosen the muscles. Nothing has worked so far. I'm also worried about going down this road and possibly it not leading to a resolution, just because I've been sidetracked by previous diagnoses that were seemingly incorrect and led to many months of chasing after something that apparently could not have been the root cause at all.

If anyone has knowledge or experience with these specific issues that I have described, do you have any suggestions for what to investigate? Any help or input is appreciated very much. Thank you and good luck and best wishes to all!

Hi GM15

It certainly sounds like you have some nerve issues here....can you tell us when you first noticed this onset of irritation and pain...and if any particular activity may have caused it?

Nerves are strange things and give off many strange sensations...sitting with any pn issues is not a good thing even with a cushion.

Looking forward to hearing more from you.

Hello GM,

There are a number of nerves in the pelvic area that could be contributing to the burning feeling and sometimes it's a real challenge to determine which nerves are irritated and whether the problem is peripheral pelvic nerves or a radiculopathy located in the spine.

It's also hard to tell whether the muscles went into spasm first and started to irritate the nerves or whether the nerves were irritated first and caused the muscles to go into spasm. Unfortunately there are no diagnostic tests that are 100 % accurate in determining what the problem is so sometimes it's a matter of ruling out things until you figure it out.

I don't know what diagnostic tests you've had so far. Some of the disorders that can cause symptoms similar to pudendal neuralgia are sacral nerve root impingements due to things such as tarlov cysts so it's important to have an MRI and when you do you might as well try to get a 3T MRI using Dr. Hollis Potter's protocol. Also a good PT evaluation for SI joint dysfunction, sacroiliac ligament strain, and pelvis misalignment is important, especially with your history of weightlifting. If you've been hanging around here for awhile you probably already know some of this stuff.

Best,

Violet M

Thank you for the replies.

Amanda wrote: It certainly sounds like you have some nerve issues here....can you tell us when you first noticed this onset of irritation and pain...and if any particular activity may have caused it?

It was approximately 15 months ago. I cannot determine what particular activity could have triggered it, since it doesn't seem like I had been doing anything different in terms of activity and lifestyle. It may have been that a particular set of lower body workouts triggered it (squats, deadlifts, lunges) if it is related to weight training exercise and exacerbated by a desk job with constant sitting, but it may have also been something that I was headed for and I just crossed some sort of threshold without anything specific to cause it.

Amanda wrote: Nerves are strange things and give off many strange sensations...sitting with any pn issues is not a good thing even with a cushion.

I have tried to convert to a standing desk and can manage it for approximately one month before I get extreme discomfort in my shoulders due to the positioning of the keyboard for the computer. I have consulted with "experts" to try to design a proper workstation but it just doesn't work. I had also noticed that standing seems to cause my muscles to tighten up even more so and I figured I may be doing more harm than good if the tight muscles are the cause or a contributing factor to the problem. I really can't find an alternative and since even laying down will cause the burning (but to a lesser degree) I have thought that it might be something that is a constant but that I just notice more when I am sitting due to the compression of the legs.

Violet M wrote: I don't know what diagnostic tests you've had so far. Some of the disorders that can cause symptoms similar to pudendal neuralgia are sacral nerve root impingements due to things such as tarlov cysts so it's important to have an MRI and when you do you might as well try to get a 3T MRI using Dr. Hollis Potter's protocol.

Among other diagnostic test, I have had a full body MRI which revealed some disc degeneration in L5/S1 level and also a disc bulge at the same area. It was thought that this was the cause of the issues and all non-surgical avenues were explored for treatment but with no relief. Two orthopaedic surgeons that I consulted both agreed that the problem was not in the spine and encouraged me to "start at the beginning" as something was missed. The relatively recent (~6 months) diagnosis of muscle issues seemed that it could have been the "something" that was missed, and so that's what I've started looking into more and considering that the disc issues are probably not the cause. Pudendal issues being a possible cause are more recent than that and my current focus as a possible explanation.

Hi GM
Have you had some physio then, to identify these pelvic floor and other tight muscle problems? That would seem like a good plan BUT I would always advise a PN aware physio to identify which muscles need attention. Because you have no traumatic event that seemed to cause your present problems I would very much hope that they will calm down with conventional treatments like physio.
What about medication?
Take care,
Helen

helenlegs 11 wrote:Hi GM
Have you had some physio then, to identify these pelvic floor and other tight muscle problems? That would seem like a good plan BUT I would always advise a PN aware physio to identify which muscles need attention. Because you have no traumatic event that seemed to cause your present problems I would very much hope that they will calm down with conventional treatments like physio.
What about medication?

Hi Helen and thank you for your post. I am exploring PT treatment for the pelvic floor at this time although it is more difficult to find those who treat men, it seems. I am also hopeful that simply calming the muscles down could at the least lead to positive progression with the condition and the hope that I'm finally on the right track. I took Neurontin for approximately one month with no result (other than very inconveniencing side effects -- dizziness, confusion, etc.). I had read on this board about Lyrica and it seems like something to explore and I will ask my doctor about it to see his thoughts.

GM, did you get up to at least 1800 mg of neurontin? It's typically not considered effective for pain at lower doses. What about an antidepressant such as cymbalta or amitriptyline? Sometimes one of these along with lyrica or neurontin are more effective than either by itself. Hopefully these would not be a long-term solution for you but something to get you by until you figure out what the real problem is and how to treat it.

Violet

Violet M wrote:I don't know what diagnostic tests you've had so far. Some of the disorders that can cause symptoms similar to pudendal neuralgia are sacral nerve root impingements due to things such as tarlov cysts

Hi Violet and GM15 - Just an observation as a tarlov cyst patient - reading the description of the symptoms I would be inclined to rule out tarlov cysts or other impingement on the sacral nerve roots. It sounds like the pudendal or another nerve in the area is directly inflammed, as evidenced by relief when sitting on ice, when sitting on a toilet seat, or any situation where the nerve itself is not directly compressed. With sacral nerve root pathology, sitting pain comes from the fact that your body is flexed / bent, period. Toilet seat sitting has always been the worst for me since so much weight has to be carried on the sacrum. I have had the length of the nerve palpated transvaginally before without any pain reaction at all, whereas direct palpation of the nerve sends most pudendal patients through the roof. However my Pudendal Nerve Motor Latenct Test showed a definite delay in conduction. A feature of sacral nerve root origin in my experience is that the pudendal nerve is nontender, sitting on a hard surface is an equal experience to sitting on a soft surface, there is no relief from ice. relief only comes from keeping the body in a straight position, minimizing sitting and bending.

GM15 to me it sounds like you have some very inflammed nerves and whether the pelvic floor dysfunction is cause or effect, PT would probably be a great place to start. When you say standing seems to tighten your muscles more, it sounds like you need some muscle retraining. You might have been tensing the pelvic floor as a means of muscular support when doing workouts, instead of using muscles that can really handle that load. It sounds like you use those same muscles habitually to support yourself, even when just standing. One very valuable thing I learned in PT was how to support my body by tightening the transverse abdominal muscles (TA's) instead of the pelvic floor. The TA's are lower abs I never even knew I had, and they were very weak. I had to start PT excercises just by learning to "isolate" the muscle, that is find it and contract it without mass-contracting the pelvic floor or other abs along with it. Once I learned to isolate that muscle I was told to tighten it for support during every PT excercise I did; and I got "abs of steel" pretty fast. I was benefitting from PT mainly for neurogenic bladder: When I started I could practically no longer walk because just standing gave me constant urgency to urinate; and by learning to isolate the "good" muscles that support the pelvis (in my case TA's and glutes), and contract them while relaxing the pelvic floor, I was able to stop the urgency and do a reasonable amount of walking again. While your symptoms are different it sounds like you might have the same issue of weak core muscles, which are muscles often ignored in workouts but really necessary to support the body without injury.

Since sitting and standing are both problematic, have you tried a kneeling chair? I got one mail order from walmart for less than $100. It turned out not to be for me because tarlov cysts also cause problems with the legs and feet; but if pelvic pain is your only problem, it will work to take the pressure off of your pudendal nerve by redistributing weight to your legs. The rest of my family found the chair very comfy and my husband eventually stole it for his office, so I guess it's an all-around ergonomic chair, not just for pudendal issues.

Excellent points HM. Core muscle strengthening is just so valuable whatever the circumstances and I agree about identifying the separate muscles within your pelvic area this is why a good pelvic physio who is pn aware (in our cases) can be so valuable. However, I'm still searching .
I remember when I had my S1/L5 herniation and as you say it is any bending, forward, sitting, leg raise: just any stretch to the nerve that is problematic. Sitting on a toilet seat or favoring the better side when sitting, brings no relief at all.
Only other point about the kneeling chair, which I have (a cheap one from e bay) I really thought it would be ideal BUT it does put a strain on my (worst side) SI joint as the 'load' seems to go straight to that point which is right next to my constantly painful spot in the piriformis. The seat did me no good what so ever but for the price of the cheaper varieties, it may be something to try GM. . . .You can have mine .
Agree with Violet too regarding gabapentin levels but I understand the balance of side effects against any pain relief. If you can get lyrica obviously give it a try too. I would assume tho', that a DR would want to titrate the gabapentin dose up before they would try lyrica. (a cost issue) However you could site your dreadful reaction and inability to handle the side affects of gabapentin at even a low dose. Or words to that effect
Let us know how you get on.
Hope you are gradually improving HM. How is any piriformis problems now you have had the tarlov op? I remember it was always something that you wondered about, hope that has improved for you too.
take care all,
Helen

Hi Helen,
I'm thankful to be having a pretty easy surgical recovery, don't want to take up too much of anybody else's thread to expand on that. I wonder how my piriformis is doing too...I alway had severe tenderness on palpation of the insertion points, right worse than left; but other than that I didn't have any piriformis pain; Dr. Filler just stated that on MRN my piriformis was bipartite and in spasm bilateral, R worse than L, with elements of the pudendal and sciatic nerves entrapped. When I feel the insertion points now I don't have tenderness over the right, but I still do over the left. I haven't had any sciatica at all since the surgery. Pudendal neuropathy has not disappeared but I was told not to expect it so early in recovery.

I am on 2400 mg of gabapentin and yes it only does any good in high doses - I hear of people being put on 100 to 300 mg at bedtime which is a joke. I take 600 mg 4 times per day. If you are going to tolerate high dose gabapentin at all, it will usually be by starting low and building up as toleration increases. Initially I felt like I was getting quite high off the stuff but that "stoned" feeling goes away as you adjust to it. Trouble with memory continues for many of us as long as we are on the med though.