Health Organization for Pudendal Education

Just wondering what urinary issues people deal with with PN/PNE. I have been dealing with PN symptoms for about 8 months now and have just recently started feeling the urge to urinate constantly. I don't go constantly, just feel like I need to (I can make myself hold it still, thankfully). Is that normal for this to start a long time after my other PN symptoms? What other urinary issues do you all deal with? Anyone on here also have IC?

I had IC from age 14 but it was in remission from age 17 onward - that is I learned to self-manage to the point where I was not interested in further medical care.

My PN came on gradually over a course of 5 years after my 2nd child was born. Neuropathy actually started in my toes and feet, then pubic, then anal, with continued increase in severity of each. Finally my "end stage" was neurogenic bladder: Totally disabling bladder spasms. I did have to run to the bathroom constantly, or else felt like I was using all my mucles to hold in my urine and avoid total incontinence. I could not wear an incontinence pad or diaper due to the discomfort of the neuropathy, so I had to deal with the frequent bathroom trips until I got into PT care.

IC and neurogenic bladder have some overlap in some people but they are not the same: IC is diagnosable by pinpoint hemorrhages on the bladder was during cysto / hydro and before I learned self care my primary features were pain and low bladder capacity, but I only had spasms intermittantly and could function. The neurogenic bladder was not painful. Neurogenic bladder is more concerned with abnormal bladder function: spasticity or retention (partial or total).

I had PNE for 32 years and only had urinary issues the last 2 years. I felt like I had to go constantly, burning with urination and wasn't able to empty my bladder.

4 months out from surgery and all that is over now so there is hope.

Good luck and if I can answer any questions PM me.

Loves

I have just recently (last couple of days) noticed some urinary issues. I really feel like I have to go but then I have to wait and wait until it finally starts. Bizarre. I too was wondering if this had to do with PN in any way. See neurologist on Wednesday and I'm adding this to my list for him.

HerMajesty,

so I had to deal with the frequent bathroom trips until I got into PT care.

So, the only treatment you had for neurogenic bladder was PT? What all did they do in PT for it? I am in PT now and my PT has talked to me about "bladder retraining". I can hold my bladder for usually up to 2-4 hours (depending on how much I've recently drank), but I don't know how to stop the constant urge i feel?

I got enough bladder relief in traditional pelvic floor PT, particularly trigger point work on my abdomen and inner thighs and strengthening of my transverse abdominal muscles, to be able to function again to an extent, like drive my kids to school one way without stopping, or take a walk a couple of times around the block.
My pelvic floor PT could tell my pelvis was badly misaligned so she referred me to PT manual therapy. Proper alignment of my pelvis 100% resolved my neurogenic bladder issues.

I had frequent urination start 7 years before my PN pains started to develop to the point that I noticed them and they became bothersome. I still have frequent urination, and this year it got a little worse. I pee every hour, and 2-3x at night. No incontinence though thank God! It just feels better after I pee... less pressure on the nerve.

Faith, the feeling of needing to urinate constantly is a very common symptom of pudendal neuralgia. I developed that symptom about a year after PN pain started and surgery has essentially cured the problem.

I don't think there is enough research to conclude whether pudendal neuropathy can be one of the causes of IC -- I know that some of the PN docs think it is.

Very interesting as I had problems more than a year and a half after symptoms of pn. The thing is its not every day I might have problems for 3 or 4 days followed by a few good days. I have been doing some piriformis stetches for the last 2 weeks and things seem a little better but only time will tell. Ive also given up coffee the last few days as I dont think it was helping much. Does any one else have spells where the urgency goes away. Also my main symptoms seem to have reduced abit and the urgency and bladder pressure seems to be more of an issue now . Does any one know of any meds that would help with urinary urgency.

Manhy thanks


Jacko

I think that some of my urinary issues may be related to abdominal trigger points. I can press on my abdomen in different places and it cauess sharp pain referred all over my abdomen and groin area. I just thought I would mention that. Does anyone have any experience with abdominal trigger points?