Health Organization for Pudendal Education

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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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

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.

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.

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,
Karyn

Joddy,
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.

Don

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.