urinary issues

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

urinary issues

Post by Faith »

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?
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: urinary issues

Post by HerMajesty »

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).
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
kat
Posts: 203
Joined: Fri Sep 17, 2010 3:44 pm

Re: urinary issues

Post by kat »

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
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
TracyB7777
Posts: 196
Joined: Mon Sep 27, 2010 3:42 am
Location: Vail, Arizona

Re: urinary issues

Post by TracyB7777 »

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.
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now. :(
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: urinary issues

Post by Faith »

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?
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: urinary issues

Post by HerMajesty »

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.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: urinary issues

Post by pianogal »

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.
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
User avatar
Violet M
Posts: 7160
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: urinary issues

Post by Violet M »

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.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
jacko
Posts: 26
Joined: Tue Nov 23, 2010 11:48 pm

Re: urinary issues

Post by jacko »

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
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: urinary issues

Post by Faith »

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?
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
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