I fear that I may have PN.....desperate for some help

[Violet M]

Lucky, when I was in the worst of PN and going to the bathroom all the time my doc said to hold it as long as possible in order to stretch the bladder more and increase the capacity. Problem is, a small bladder wasn't the issue. It wasn't that the bladder needed stretching, it was that the nerve innervating the bladder sphincter was entrapped and holding in urine would not have fixed that. Also, in order to hold urine in you have to tense the pelvic floor similar to a kegal which is contraindicated for people with pudendal neuralgia. I don't know how much your PT knows about pudendal neuralgia but the program she has you on would not have worked for me. Stretches pushed me over the edge from mild symptoms into full-blown PNE.

Power walking is very jarring and personally I can't do it because it strains the ligaments too much. Now, I don't want to sound like your mom or anything like that, but 1 1/2 hours a day would be considered a little extreme to the average person. I don't know the state of your ligaments/pelvic stability but if power walking is making your butt and hips ache, you have to wonder what's up with that. I see that you have a history of weightlifting. Sorry, I may not have the physical therapy training that your PT does but I have learned through personal experience that exercise can be the cause of pudendal neuralgia/pudendal nerve entrapment and continuing to pursue exercise that causes pain is a red flag in my mind. Not trying to alarm you but I just wish there had been someone to warn me before I got myself into such a pickle by continuing to pursue extreme exercise. Who could have thought that there was such a thing as pudendal nerve entrapment and the unbelievable pain it causes?

Haven't used diazepam (valium) suppositories myself but I know people who have found it helpful. Definitely worth a try.

Best,

Violet

[lucky]

Got it. But then again, if I try to pee for every time I feel the urge to, wouldn't that also be counterproductive?


Stretching made your symptoms worse?? That's the first time I've come across anyone who's experienced this. What sort of home remedies helped keep the issue at bay?


When did you finally decide surgery was for you?


Should add that they are convinced PFD is what is compressing the nerves, and not that the nerves are entrapped, causing PFD. Then again, that's their opinion.


With respect to diazepam, would someone with PN/PNE not benefit from taking it, considering it only helps relax the muscles?

[Violet M]

Got it. But then again, if I try to pee for every time I feel the urge to, wouldn't that also be counterproductive?

Well, you might be in the bathroom endlessly and obviously that would be counterproductive. I guess my point is that I wonder if there is any advantage to trying to hold in the urine if it increases your discomfort. If there is some ultimate advantage to doing so then yes, maybe it's worth it. Did the PT say what the point is of doing this? Is the goal to stretch your bladder capacity? Sorry, I'm one of those people who always has to ask why.

Stretching made your symptoms worse?? That's the first time I've come across anyone who's experienced this. What sort of home remedies helped keep the issue at bay?

There wasn't immediate pain with stretching but over time the stretching exercises made me worse, not better. If the nerve is compressed between ligaments it can't glide, so stretching causes a stretch injury of the nerve.

When did you finally decide surgery was for you?

Tried PT from 2 different people -- just got worse. Tried nerve blocks and laid around on the couch for months and just got worse. There weren't many options back then. Had no quality of life, couldn't sleep, lots of pain. History, clinical exam, diagnostic tests all pointed to nerve entrapment.

Should add that they are convinced PFD is what is compressing the nerves, and not that the nerves are entrapped, causing PFD. Then again, that's their opinion.

Well, they could be right. What do they think is causing the PFD? I can't say -- just telling you my experience. Sometimes you just have to follow your instincts. What do you think is going on?

With respect to diazepam, would someone with PN/PNE not benefit from taking it, considering it only helps relax the muscles?

Well, I've heard the theory that if it's PFD a muscle relaxer will help but if it's PNE it won't. I don't know if that's true or not. I mean, most people with PNE have PFD, so it seems like if you can get the muscles to relax there might be at least partial pain relief even if you have PNE.

Violet

[lucky]

Guys!


So I've been taking about 20mg of Diazepam a day, and I've got to say that the difference is incredible. For one, I can hold my pee for at least an hour and the urge isn't nearly as intense.


I wonder what this could mean. I'm waiting to see my PT again to get her take on it.

[Violet M]

Diazepam is a muscle relaxant. If you have a tense pelvic floor with tense muscles impinging on the pudendal nerve, it could be very helpful to take a muscle relaxant so the muscles aren't irritating the pudendal nerve as much. Glad to hear this is helping you.

Violet

[HerMajesty]

1. The role of diazepam in pelvic pain is more than muscle a relaxant. I get tremendous relief from diazepam, and my doc said it is a mild muscle relaxant and so he gave me samples of Soma to try instead, which is a much more powerful muscle relaxant. The Soma did almost nothing. Diazepam has continued to be a mainstay for myself and many other with chronic neuropathic pelvic pain - it had an impact on the central nervous system.

2. It seems odd to me that the ONLY modality being used in PT is internal muscle stretching. This is by far not th only type of PT available. My bladder urgency responded very well, and very rapidly, to a PT regimen of core strngthening and external deep tissue /trigger point massage whereas internal PT was pretty much a waste of my time...so if you are getting only internal PT and have seen no bladder improvement...not sure why that is still all you are getting. I think when it comes to your options, they include finding a PT with a broader "toolkit" than just internal PT alone. There are many other PT modalities and I would hate for you to feel like you "tried PT" and are "out of options", just because the PT you saw appears to have a very narrow approach to the pelvic floor.

3. As somebody with a 30 year history of bladder issues I kind of see what the PT was getting at with the instruction to resist the urge to urinate...On the one hand, it is a principle of bladder retraining; on the other hand, in and of itself it is a woefully inadequate description of how to approach bladder retraining. A feeling of constant urgency can be part of a viscious cycle in which the bladder is irritated, this gives the individual an illusory feeling of needing to pee, and the act of bearing down and dribbling from a nearly empty bladder causes bladder spasm and even greater urgency. You can't overcome this however with a single goal to resist urgency - as Violet said this will only cause you to tense your pelvic floor. For one thing, you need to radically increase your water intake, so that you are rapidly filling the bladder. This helps to avoid the spasms you will get from trying to pee when your bladder is nearly empty. For another thing, you need to be able to recognize true bladder fullness (which can be discerned by pressing gently above your pubic bone), from false urgency signals from the nerves - and need to learn to respond to false urgency signals with intentional relaxation of the pelvic floor instead of tensing to "hold it in". Intentional relaxation of the pelvic floor is one thing that needs to be learned, and your PT should teach you how to do this instead of giving you a vague directive.

[Violet M]

1. The role of diazepam in pelvic pain is more than muscle a relaxant. I get tremendous relief from diazepam, and my doc said it is a mild muscle relaxant and so he gave me samples of Soma to try instead, which is a much more powerful muscle relaxant. The Soma did almost nothing. Diazepam has continued to be a mainstay for myself and many other with chronic neuropathic pelvic pain - it had an impact on the central nervous system.

Excellent point, HM. Muscle relaxant is only one of the beneficial actions of valium for people with PN.

http://www.rxlist.com/valium-drug/clini ... cology.htm

"Diazepam is a benzodiazepine that exerts anxiolytic, sedative, muscle-relaxant, anticonvulsant and amnestic effects. Most of these effects are thought to result from a facilitation of the action of gamma aminobutyric acid (GABA), an inhibitory neurotransmitter in the central nervous system."

Violet

[lucky]

Hey everyone,



I'm really starting to question whether I even have PN/PNE at all! I'm beginning to notice that PT is helping. No longer really feel golfball in rectum and I'm finally getting restful sleep (could be the diazepam, but who knows). Anyway, the PT says she's noticed incredible relaxation-not nearly as tight as before, and I'm able to contract, relax, and bulge more easily. They are adamant about the improvements I've made. Things are looking up.

[Violet M]

My understanding is that if you have PN without an entrapment, you are more likely to have success from PT. I think that's why it's really important for people to give PT a try before trying more invasive treatments.

Hope PT continues to go well for you, Lucky.

Violet

[lucky]

Great!



So then PN could be healed with rigorous PT? Much better scenario than entrapment