Bladder Problems And PNE

Hysterectomy, Ovary Removal, SIJD, Piriformis Syndrome etc

Bladder Problems And PNE

Postby JODDY » Sun Jun 19, 2011 9:11 pm

I have Levator Spasms and I am almost sure that the spasms are caused by PNE.I also have bladder problems.(Frequent urination,burning,and not completely emptying the bladder).I have no infection and the prostate exam revealed a normal prostate.Can the Levator Spasms (or PNE )cause problems in the bladder? I started having bladder problems about two months ago and the Levator Spasms are a lot worse.

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Re: Bladder Problems And PNE

Postby A's Mommy » Mon Jun 20, 2011 1:31 am

Yes Joddy, all of these bladder symptoms sound completely normal for someone with either PN/PNE or PFD. My bladder symptoms got much better after my decompression surgery, but when I am very flared up, they do return and I know it is because the nerve is firing those pelvic floor muscles into a tizzy.

A's Mommy
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
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Re: Bladder Problems And PNE

Postby HerMajesty » Mon Jun 20, 2011 3:38 am

My pelvic pain syndrome started with interstitial cystitis, a disorder diagnosed by distending the bladder while looking up there with a camera, if it is IC the bladder will hemorrhage when distended. That is a frequency / urgency / pain type bladder condition. I had that for a good 20 years before the PNE, but after the 1st 3 years or so it was under very good control from self care and not causing a major impact on my life. I started getting various neuropathies (1st the toes, feet, then pudendal) about 5 or 6 years ago, and finally the symptoms peaked in 2009 with severe neurogenic bladder - that is, I had bladder spasms so bad i could not function. Every time I stood up, it felt like I was 9 months pregnant and a baby was falling on my bladder. I could not walk or drive for any reasonable period due to severe urge to urinate - pretty much I guess I was at the point where most people would just consider themselves incontinent and put on an adult diaper, but I could not do that because the contact of a diaper with my pelvic area would have made the PN unbearable. So I was just in a constant struggle to "hold it in".
All this stuff: The IC, PNE, neurogenic bladder - are all interrelated and part of the same pelvic pain syndrome.
I don't know if this is true for everyone, but my bladder problem was much easier to fix than the associated neuropathies. I have very few bladder problems now, just some painless excess residual. In other words my bladder feels 100% but I am very prone to bladder infections because when I urinate even though like it feels like my bladder is all the way empty, it in fact still retains some urine which makes a nice environment for bacterial growth. Physical Therapy resolved almost all the bladder stuff, and in fact my bladder began to improve very rapidly within the 1st week or 2 of PT even when the neuropathies remained intractable.
I would recommend trying PT for the bladder, but do be firm about not doing anything that exacerbates your neuropathy. I was fortunate in that my neuropathy was not exacerbated by PT, but that has not been the case for many people who have posted on this board. If it is going to work, it will start to work quick and not "get worse before it gets better". A lot of patients have been given that line by PT's, it is a fallacy. I kept going back because my bladder could feel the difference each time I walked out of there.
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.
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Re: Bladder Problems And PNE

Postby JODDY » Tue Jul 12, 2011 4:22 pm

I am having an increase in pressure in the rectum. I seen the colon-rectal doc yesterday and all he told me to do is eat a reasonable fiber diet and have a good liquid intake. I am still having bladder problems(see eariler post)The urologist has me on flomax and proscar,but the flomax is causing dental pain. The proscar had caused abdominal cramps. I have temporarily stopped taking both of these drugs.Dental pain and abdominal cramps are just too much on top of of everything else.When I see the urologist, he will probably want me to have something called green light therapy since I can't take the drugs. The green light therapy vaporizes the tissue in the prostate that is causing reduced urine flow. I went to the E/R last week for back problems and burning after urinating.The doctor examined my prostate and said it was normal. If I have a normal prostate, why would I need flomax,proscar, or the green light surgery.If the Pudendal nerve is causing all my problems, why have the surgery? Most doctors don't know what you are talking about when you mention Pudendal Nerve Entrapment . I feel miserable and confused.
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Re: Bladder Problems And PNE

Postby Karyn » Tue Jul 12, 2011 8:14 pm

Hi Joddy,
I'm very sorry to hear about your increase in symptoms. I can sympathize and relate to your experiences with your current doctors. I too was told to "eat more fiber and increase my fluid intake" after having a colonoscopy which detected "severe sigmoid spasm". No further explanation or treatment offered. You would think this type of specialist would considered nerve involvement, but no.
Wouldn't even entertain the idea.
JODDY wrote:If I have a normal prostate, why would I need flomax,proscar, or the green light surgery.

The answer is very simple. This is their way of saying they're doing something for you.
JODDY wrote:When I see the urologist, he will probably want me to have something called green light therapy since I can't take the drugs.

What is green light therapy?
JODDY wrote:If the Pudendal nerve is causing all my problems, why have the surgery?

I'm sorry - I don't understand your question. Are you referring to PN decompression surgery? Is green light a type of surgery? The pudendal nerve does control bladder and bowel function. so that may be what's going on with you.
JODDY wrote:Most doctors don't know what you are talking about when you mention Pudendal Nerve Entrapment .

This is sad, but true. Have you had a chance to consult with any of the PN docs listed on this site?
Warm regards,
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: Bladder Problems And PNE

Postby donstore » Thu Jul 14, 2011 7:06 am

Proscar is used to shrink the prostate when it is causing urinary problems due to BPH (enlarged prostate pressing on the bladder). If your prostate is not enlarged,, then proscar (which cuts down testostrone production) is pointless. Flomax is a smooth muscle relaxer that specifically affects the smooth muscle around the bladder. It is a common prescription that urologists use for men with urinary synptoms since most of them have never heard of PN. As Karyn suggested, if there is any way you can see a PN specialist, then you should. Medicare would probably pay for Dr. Potter's MRI if you can swing the airfare. All you need is a recorded history of pelvic pain and a referral from a doctor.

Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
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Re: Bladder Problems And PNE

Postby frickla » Fri Aug 05, 2011 1:51 pm

PN causes bladder pain and frequency named IC an incurable bladder disease. Uros but people through unnecessary hydrodissentions which would make any bladder bleed. In some medical circles this is now considered a barbaric outdated procedure. I avoided it on the advice of a nurse. I did have the scope to check my bladder which was fine. Took six years to figure out I had PN and PS nerve entrapment. Nerve blocks help to calm the nerves down until I have surgery.
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