Must have PNE- what else could it be?

[Vonic]

For my first post I would like to thank you for providing this forum. I have not had any official diagnosis yet, but am pursing the process to more definitively determine the cause of my pain. My pain started in May 2009 following a vasectomy. For nearly two years I pursued post vasectomy pain syndrome as the possible cause of my pain, which was focused in the area of the actual procedure, bilaterally. At the time it seemed reasonable to assume nerve damage as the procedure resulted in damage to ample amounts of parivascular tissue. Then in November of 2009, the 27th to be exact, I began to experience a burning pain in my perineum which has never since left me. At the time I figured it was just an extension of post vasectomy pain. The pain was notably reduced by hard physical activity and laying on my back and exacerbated by sitting. I have heard of PNE from research I have done over the years, but discounted it as a possible source of pain as I still hard a burning pain in the vicinity of the vasectomy. That was until I took a closer look at a model to realize that one of the branches of the pudendal nerve is located in the vicinity of the vasectomy. If it were really nerve damage caused by the vasectomy, pain diminishment while exercising would not be consistent nor would the perineal pain, increased by sitting, dissipated by standing.
I have tried numerous methods to control the pain including Gabapentin, genito-femoral nerve blocks, Tramadol, physical therapy—all with no result. The recent flare up I have been experiencing is what has driven me to look for solutions again. PN seems the most plausible and the only direction I have to go on now. All of my outward symptoms fit. The trick, just like post vasectomy pain, will be to educate myself first and then my doctors. That’ll be two months from now- when I have my first appointment with a neurologist.
So here is a summary of my symptoms. The primary symptom is a burning like pain in my perineal area and in the area just above where a vasectomy is performed, bilaterally. The pain becomes more pronounced when sitting and dissipates somewhat when standing and will dissipate when laying on my back for longer periods of time. Physical activity such as in weight lifting, hiking, running provides the most relief. There is a spot on one side next to what I believe to be the sacrotuberous ligament, that if I message hard enough and deep enough is extremely sensitive. It is this spot that I can evoke a significant increase in the burn almost to unbearable levels. Based on models, it seems like this is the same region as Alcock’s canal. The same spot on the other side is not at all sensitive. It is also this same spot that evokes the most pain when sitting. And in all, it feels like my entire nervous system has been electrified.
The one symptom that seems inconsistent with PN is the decrease in pain resulting from physical activity. This symptom seems more consistent with nerve impingement/compression on the lower spine. That being said, I do experience intermittent low back pain daily and at times I am physically unable to straighten my back after sitting or lying down.
So I am at a loss and have begun what seems like a long and arduous process to get a more definitive diagnosis. I think that the biggest hurdle is trying to stay positive. Pain is very effective at clouding almost everything in life. Especially when there seems to be no solution. So here I am, and will remain for some time, and thanks again for the forum.

[Lernica]

The fact that your pain decreases during physical activity tells me that it might be a tight muscle issue (muscles loosen when warmed up) rather than a nerve issue. It could also be tight muscles compressing on a nerve. In any event, it would seem that the best course would be to follow a regime to keep your muscles warm, supple and loose, i.e., frequent hot baths and showers, gentle stretching, regular massage, etc. I would encourage you to see a PT who specializes in pelvic pain and who does internal massage of your pelvic floor muscles. It could be that one of these muscles (e.g. obturator internus, which is also a hip flexor) is spasming. You can refer to the Home page on this website for a list of pelvic PTs in your area.

Good luck.

[Vonic]

Thanks Lernica,
I did give PT a try which included internal massage of the pelvic floor muscles. It really did not improve the pain and because of the particular area of this condition and the udder aversion I had/have toward internal massage, it did not serve to relax the area at all. It was suggested that I do my own internal massage, which I was never able to bring myself to do. The PT did note that my muscles were tight in this region. And sometimes it feels like my muscles are continously flexed. I recently worked out religiously for a three month period almost every day and during that time I pushed myself as hard as I could. During that three months I had experienced the lowest levels of pain I have ever had in the last 3-years. I stopped working out because of loosing motivation and the time commitment needed, and within two weeks the pain levels began to intensify. I had comtemplated trying a muscle relaxant, but it was suggested by the PT not to go this route. But overall, maybe your right. It could be a simple case of muscle tightness. Either way, the pain never totally goes away no matter how good it gets.

[Lernica]

You do not have PN. You wouldn't be able to exercise at all if you did. Many of us become bedridden because of the condition.

I really do believe you should give PT another try. If you think your pelvis is all fired up with nerves (as you expressed earlier), you could also try to take some medication to down regulate the nerves. I don't think you need Gabapentin, but how about an antidepressant like amitriptylene or Cymbalta? You may find that even a low dose makes a difference. But it could take a number of weeks before you notice a difference.

Another option might be to try a quick-acting nerve calmer like a tranquillizer (valium, clonazepam). If you find that this decreases your pain, then you may want to go for the longer-acting nerve calming drugs such as those listed above.

It goes without saying that you should not be sitting if you find that it increases your pain. You should get a laptop computer and work from a surface much higher than a regular desk top, say about chest-high. Painful sitting would be consistent with my theory that it is one of your pelvic floor muscles that is the culprit.

Good luck and count your blessings that you do not have PN.

[Violet M]

I was able to exercise for quite awhile after PN began and at times it seemed like stretches, etc. helped. I think it's reasonable to at least try to rule it out with 3 T MRI's and other diagnostic tests.

[carolynm]

I wouldn't expect great things from a neurologist. Many of us have been to them and they are cluless about the PN. If you tell us where you are located, someone may have a better sugggestion for you...a doc that is "PN-aware".

cm