My story, and I have one big question.

[aspiesinger]

My story is a long one, so I will try to make this short. Skip to the bottom if you just want to look at my question.
My symptoms are: I feel like I have to pee badly 24/7 (it lessens a bit with laying down for a long while or sitting on a toilet), and I have pretty bad urinary hesitancy sometimes (it varies). My sphincter doesn't do anything at first when I sit on the toilet, then twitches oddly when I start to pee, and then finally I pee normally. I have a weak stream if I don't take my Rapaflo (similar to Flomax, I'm not a guy but this helps me pee so it's whatever). I also sometimes have a hard time having BMs, which was NEVER an issue until this problem started. My urinary symptoms worsen after I have BMs as well, even if they aren't strained ones. I've never actually leaked urine, but I think I dribble an itty bit after peeing sometimes. Presumably urine just gets trapped in my urethra.

I should stress that I've never had pain through this aside from when I was cathed for a urodynamics test.

I've been through the ringer with treatments for issues like IC or high-tone PFD, but something is off, as I have had literally no response to any treatments. It appears my bladder itself is perfectly healthy (tests show it as such), and that my urethra and something that controls or surrounds the bladder is what the real problem is. No meds that should help me really help, and sometimes they make things worse. If it can even possibly cause urinary retention, it will cause retention in me (including valium). The reason I ended up here is because I was researching nerve blocks and read about a few people with diagnosis's of PNE that match up to my symptoms very well, but they have some sort of pain added on.

The only thing I had a slight response to as far as the 24/7 urge to pee was Elavil (Amitriptyline), but yet again that stupid anticholinergic effect causes my bladder to not want to do it's job to pee on top of it already being hard for me to pee, so I had to stop it (it also gave me overly vivid, weird nightmares). I was thinking about asking my urogyne for Lyrica or one of the related drugs, especially since I can't find anything about that having anticholinergic effects. I figure if there's a nerve component, Lyrica may do something.

My lack of pain has actually been the worst thing (not saying this to say pain isn't a horrible symptom to deal with, I do have awful back pain sometimes and I have IBS) because people sometimes just want to pin OAB on me and it's most definitely not OAB. Every disorder that matches up to me has the top symptom as being pain, so it's very frustrating not knowing where to look for a proper diagnosis, and without that finding proper treatment is impossible. I know high-tone PFD fits my symptoms, but all treatments for that have failed, and I also can't find anyone with PFD who have this CONSTANT urge to pee. Not even near constant, it's 24/7, never leaves me alone. I'm losing my mind. I'm only 21, it's too early for this s**t.

Now, my biggest question for you guys, as my searches have been useless: Is it possible to have PNE WITHOUT any pain? (Is this something I should pursue testing/treatment for?)

(Also, sorry this is so long. Thanks for reading.)

[helenlegs 11]

Hi aspiesinger, welcome
The pudendal nerve has a motor and sensory function so contains motor and sensory fibers. Much of the time people with PN have no motor function problems i.e bladder and bowel problems and just have pain in the pudendl nerve distribution area. The sensory fibers are obviously affected and the motor ones spared. Equally some people have both sensory (pain) and some motor dysfunction (which can be urgency, as you describe) I'm sure then that some people will have just a motor component to PN, it wouldn't make sense if this didn't happen, to me anyway; although it may be more unusual.
I'm not sure how you would proceed about getting this diagnosed BUT I would strongly recommend some pelvic floor or PN aware physiotherapy. The therapist may be able to find some trigger points or tight muscles that may be influencing the pudendal nerve and giving you these symptoms. Release of those muscles may help, and if so, in fact you have the diagnosis anyway.
Some people only have numbness btw too. Obviously that is a sensory symptom but it often involves no pain.
There is a list of PN aware physiotherapists on the home page.
Take care,
helen

[aspiesinger]

Hi aspiesinger, welcome
The pudendal nerve has a motor and sensory function so contains motor and sensory fibers. Much of the time people with PN have no motor function problems i.e bladder and bowel problems and just have pain in the pudendl nerve distribution area. The sensory fibers are obviously affected and the motor ones spared. Equally some people have both sensory (pain) and some motor dysfunction (which can be urgency, as you describe) I'm sure then that some people will have just a motor component to PN, it wouldn't make sense if this didn't happen, to me anyway; although it may be more unusual.
I'm not sure how you would proceed about getting this diagnosed BUT I would strongly recommend some pelvic floor or PN aware physiotherapy. The therapist may be able to find some trigger points or tight muscles that may be influencing the pudendal nerve and giving you these symptoms. Release of those muscles may help, and if so, in fact you have the diagnosis anyway.
Some people only have numbness btw too. Obviously that is a sensory symptom but it often involves no pain.
There is a list of PN aware physiotherapists on the home page.
Take care,
helen

Thanks for your response. I forgot to say I've been in PT for my pelvic floor a year now with no response, they just can't get my muscles to stay untightened. They say something must be causing them to keep going back into such a tense state but we don't know what. I was thinking maybe an issue with the pudendal nerve is what's causing the muscle tightness, it could be an endless loop where the nerve is irritated then the muscles tighten and irritate it, etc. I may just be grasping at straws at this point but it's a theory nonetheless. I will talk to my PT clinic and see if they have any therapists that know about PNE.

[helenlegs 11]

Your loop theory does make sense, it's just a shame that the PT isn't 'enough' to break that cycle. Have the therapists been able to identify the muscles involved? I presume they are some/all of the pelvic floor muscles?
While a guided PN block is usually targeted therapeutically for pain relief it is also used as a diagnostic tool and it may be worthwhile considering in your case too. If you got relief from your symptoms it would indicate that this is a nerve issue rather than anything else. If PT isn't having the effect necessary I would maybe try a different therapist?? unless you know that the person treating you is completely PN aware and knowledgeable enough for this particular treatment.
What about medication? If it is a nerve problem the combination of an antidepressant and anti seizure drug can work well although experimentation is usually needed. I know some people have also used muscle relaxant treatments, sometimes used as suppositories, which you could inquire about.
As a last resort, if a muscle spasm related, pudendal nerve issue is not ruled out, Botox and/or ketamine treatments have been used when competent PT has failed. I can see the value in botox as this does relax the muscle(s) but I could only recommend Dr Hibner,(see home pages) as I know he has done this treatment before, although there may be others. I don't know enough about ketamine treatment to comment, sorry.

[aspiesinger]

Your loop theory does make sense, it's just a shame that the PT isn't 'enough' to break that cycle. Have the therapists been able to identify the muscles involved? I presume they are some/all of the pelvic floor muscles?
While a guided PN block is usually targeted therapeutically for pain relief it is also used as a diagnostic tool and it may be worthwhile considering in your case too. If you got relief from your symptoms it would indicate that this is a nerve issue rather than anything else. If PT isn't having the effect necessary I would maybe try a different therapist?? unless you know that the person treating you is completely PN aware and knowledgeable enough for this particular treatment.
What about medication? If it is a nerve problem the combination of an antidepressant and anti seizure drug can work well although experimentation is usually needed. I know some people have also used muscle relaxant treatments, sometimes used as suppositories, which you could inquire about.
As a last resort, if a muscle spasm related, pudendal nerve issue is not ruled out, Botox and/or ketamine treatments have been used when competent PT has failed. I can see the value in botox as this does relax the muscle(s) but I could only recommend Dr Hibner,(see home pages) as I know he has done this treatment before, although there may be others. I don't know enough about ketamine treatment to comment, sorry.

Antidepressants and muscle relaxants cause me to retain and in turn make me worse, it's been awful trying to find meds. I have untreated depression because I cant take the medicine for it. I've seen two PTs, my current one does dry needling on me as well as normal therapy. My urogynecologist doesn't want me to do Botox because of how I react to muscle relaxants (retention). I am planning to ask him soon about Lyrica, nerve blocks, and PNE in general to see what he thinks; if he even knows about it. I may need another doctor to do nerve blocks.

Also I do not know what muscle groups are tight, I'd have to ask my PT for the names. I do know the muscles around my urethra are especially tight.

Thanks for talking to me btw.

[HerMajesty]

as pointed out there are sensory and motor components to the pudendal nerve, but also if there is a sensory component it might not necessarily be pain. A lot of people experience numbness, and this is not always readily apparent. I had some loss of sensation that i was not aware of, until I had a neurologist do a "prick test" gently pricking the skin with a needle in various areas (without breaking the skin. This of course should feel "sharp", but in certain areas it might feel dull or you might not feel it at all, and this can alert you to sensory changes you might not have noticed. I would suggest doing this from the feet all the way up to the pelvic area, to give you an idea if there are any non-painful sensory nerve changes.
It probably wouldn't hurt to try a neuro med such as Lyrica. It does sound like the symptoms are neurologically driven, maybe by the pudendal but maybe also by pathology in the sacral plexus, lwer spine, or cauda equina.
I have had interstitial cystitis since age 14, but got a very bad (disabling) case of neurogenic bladder spasms as part of PN in 2009 (source was sacral nerve roots) - and one thing that helped considerably was PT manual therapy correction of my pelvis which was out of joint (SIJD, Sacroiliac Joint Dysfunction). has any of the PT focused on the integrity of the bony pelvic structures (hypermobility or hypomobility of joints, uneven or twisted pelvis), or has it all been work on muscles / soft tissue? If the joints have not been examined, you might need a referral to a different kind of PT. A pelvis that is out of joint due to injury, will put tension on the soft tissue structures including nerves, and will create a perpetual cycle of re-tightening of muscle even when it is worked on persistently in PT.

[Violet M]

Also I do not know what muscle groups are tight, I'd have to ask my PT for the names. I do know the muscles around my urethra are especially tight.

The pudendal nerve innervates the bladder sphincter. Constant feeling of needing to pee is a common symptom with pudendal neuralgia. If you have pudendal neuralgia, I guess one question you might ask is, what is causing the pudendal neuralgia?

Violet

[Meliora]

Hi aspiesinger!

I was told by two people (pain doctor and pelvic specialist (neither very PN aware though) to stay away from Botox. I heeded their warning, but became desperate for help. I am having extensive Botox soon and will have to live with any side effects, BUT I hope for the best! I have awful spasms and want them to stop. For me trying Botox is better than surgery first. I use Baclofen suppositories and that helps a bit, but not enough. Botox lasts about 3 months, so I am told. I have heard of people with initial retention, but it got better for them. Your doctor knows your history though and that is important too.

I know I have the "loop" you described. My nerves and muscles are in a love/hate relationship. The nerve started it all in my case. I have dealt/deal with plumbing issues myself. My sensory function of the PN has been affected. It has caused all sorts of issues. My motor function is not too bad, for today that is.

I am sorry you are having to deal with this and hope you find relief soon.

[aspiesinger]

as pointed out there are sensory and motor components to the pudendal nerve, but also if there is a sensory component it might not necessarily be pain. A lot of people experience numbness, and this is not always readily apparent. I had some loss of sensation that i was not aware of, until I had a neurologist do a "prick test" gently pricking the skin with a needle in various areas (without breaking the skin. This of course should feel "sharp", but in certain areas it might feel dull or you might not feel it at all, and this can alert you to sensory changes you might not have noticed. I would suggest doing this from the feet all the way up to the pelvic area, to give you an idea if there are any non-painful sensory nerve changes.
It probably wouldn't hurt to try a neuro med such as Lyrica. It does sound like the symptoms are neurologically driven, maybe by the pudendal but maybe also by pathology in the sacral plexus, lwer spine, or cauda equina.
I have had interstitial cystitis since age 14, but got a very bad (disabling) case of neurogenic bladder spasms as part of PN in 2009 (source was sacral nerve roots) - and one thing that helped considerably was PT manual therapy correction of my pelvis which was out of joint (SIJD, Sacroiliac Joint Dysfunction). has any of the PT focused on the integrity of the bony pelvic structures (hypermobility or hypomobility of joints, uneven or twisted pelvis), or has it all been work on muscles / soft tissue? If the joints have not been examined, you might need a referral to a different kind of PT. A pelvis that is out of joint due to injury, will put tension on the soft tissue structures including nerves, and will create a perpetual cycle of re-tightening of muscle even when it is worked on persistently in PT.

I just started Lyrica yesterday, my urogyne's clinic is at VCU so there's a fancy messaging system I get to use to contact him, and he said Lyrica sounded like a good next step in helping us figure out what is wrong so he started me on 50mg. He's worried about giving me too strong of a dose to start, so we'll see where this goes. I feel like I'm getting a slight dulling of the urgency sensation. I haven't seen my PT yet to ask about the joint stuff or PNE, I'm supposed to go tomorrow but my area was just hit with 6 inches of snow and ice so I may not be able to get there. Thanks a lot for the extra info though, that's very helpful to know that there are other structures I should be having looked at.

I'm really worried I might have permanent damage at this point, a year ago when this issue first developed it kind of went away for a small bit (like a week) every once in awhile, now that literally never happens, so I think that's saying I got worse. The question being why, since I've been in PT that whole time the nerve should have gotten pressure removed from it, right? :/

[HerMajesty]

PT only works for some people, it depends on underlying pathology. If the nerve is entrapped in tight bands of muscle it can work very well. If it's trapped in scar tissue, or if you have spinal pathology, or any other number of possible issues, it might not be something that would respond to PT.
Don't stress over the idea of permanent damage. I had my initial pelvic injury causing IC in 1985, and then began to develop progressive neuropathy including neurogenic bladder after childbirth in 2004. I didn't have my pelvis straightened out until 2009 and didn't get surgery to correct spinal pathology (to release pressure on the nerve roots) until 2012. But i am getting better. nerves can be pretty resilient.