I fear that I may have PN.....desperate for some help

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lucky
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Joined: Tue Feb 18, 2014 8:56 am

Re: I fear that I may have PN.....desperate for some help

Post by lucky »

Just had a thought I'm sure many of you have had: wouldn't one way of determining whether you have pelvic floor dysfunction, causing PN, be by taking muscle relaxers?

One the muscle relaxers kick in, you'd feel relief, right?
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Karyn
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Re: I fear that I may have PN.....desperate for some help

Post by Karyn »

Hi Lucky,
Good question! But I think if they were effective, there wouldn't be such a need for PF/PT. I've tried various muscle relaxers in the past. It did not loosen up my PF, but did give me extra muscle spasms in my legs. :(
Have they been effective for you?

Kind regards,
Karyn
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.
lucky
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Joined: Tue Feb 18, 2014 8:56 am

Re: I fear that I may have PN.....desperate for some help

Post by lucky »

They have not really had much of an effect. I was prescribed flexiril,and after taking it for about 2 weeks, I noticed no differences. Would this suggest that I have PNE and not PN caused by pelvic floor dysfunction? I'm beginning to doubt whether or not I should even go through with some kind of physical therapy; don't want to waste my time if PT is intended to have the same effect as muscle relaxers.
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Karyn
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Re: I fear that I may have PN.....desperate for some help

Post by Karyn »

lucky wrote: I was prescribed flexiril,and after taking it for about 2 weeks, I noticed no differences. Would this suggest that I have PNE and not PN caused by pelvic floor dysfunction?
Well, no. Not really. There are lots of reasons for pelvic floor dysfunction. I'm sorry, but I don't know what your reason is. The first step with PT is a good evaluation with the hope of identifying the cause. I'm sure there are some who would disagree, but I don't believe muscles go into spasm for no reason. Muscle function is dependent on nerves and it makes sense to me that muscles would go into spasm, if the respective nerves are dysfunctional. That tightening/tensing is the bodies natural defense to protect itself from pain. The other possibility for a contracted PF may be a specific trauma to a specific muscle group, or surgical injury.
lucky wrote:The physical therapists in South Florida charge a ridiculous amount for just one visit ($195),
:shock: Have you had any luck with finding anyone who will accept your insurance?
Kind regards,
Karyn

ps ... PF/PT is a bit more involved than taking a muscle relaxer. ;)
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.
lucky
Posts: 34
Joined: Tue Feb 18, 2014 8:56 am

Re: I fear that I may have PN.....desperate for some help

Post by lucky »

That's also my belief. Why would pelvic muscles begin spazzing out of nowhere? The only connection I can make is that my symptoms became noticeable once I began lifting weights....but I never suffered any injuries.
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Karyn
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Re: I fear that I may have PN.....desperate for some help

Post by Karyn »

lucky wrote: The only connection I can make is that my symptoms became noticeable once I began lifting weights....but I never suffered any injuries.
But you did suffer an injury. You have a direct link to the cause and effect of your medical condition. I don't know what the particulars are of what happened to you, but there it is ...
Hoping you're not continuing to lift weights!
Lucky - how did you end up with the PT who initially identified your tight pelvic floor? Is that someone you could go back to?

Best,
Karyn
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.
lucky
Posts: 34
Joined: Tue Feb 18, 2014 8:56 am

Re: I fear that I may have PN.....desperate for some help

Post by lucky »

Nope. Never suffered an injury. I started lifting weights, but I never hurt myself nor had any pain anywhere. My symptoms began slowly; I only had frequent urination at night, no other problems. As time went on, I developed the other ones-pain in perineum, weak stream, difficulty emptying stool, etc.


The last urologist I went to, after performing a cystoscopy and finding nothing, told me that he could feel my tight pelvic floor muscles. He drew this conclusion from a rectal exam. Then again, I starting to think he told me this to get rid of me, as I was being very persistent in seeking treatment.


The last PT is went to see was a lady who KINDA had experience with the pelvic floor, but not really. She was unfamiliar with PN/PNE. Oh, and my insurance didn't cover the treatment, which amounted to $100 a visit. That, and her office was about 35 miles away from me.
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Violet M
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Re: I fear that I may have PN.....desperate for some help

Post by Violet M »

lucky wrote:Quick question:
How long did you all do PT before seeing any results? And if no results were seen, how long did it take for you to decide of having surgery?
Lucky, 2 months into a weightlifting program is when my PN symptoms started and at first the symptoms were mild. Initially I did about 6 sessions of PT from a PT who didn't know about PNE. She had me do biofeedback, stretching, and she did ultrasound treatments. The ultrasound treatments did help some and I got better so she quit doing the ultrasound tx. but had me continue the stretching exercises. The stretching exercises pushed me over the edge into full blown PN pain. Now I understand the reason was because the nerve was compressed between strained ligaments and stretching just aggravated the nerve.

Once I was in fullblown PNE pain I saw a PT who knew about PNE had I had one session of internal myofascial release that made me seriously worse for a week. I also found out my ligaments were chronically strained from exercise/weightlifting. It was obvious to me that internal myofascial release was only going to make things worse. I continued with PT to try to get my pelvis into alignment but after 12 weeks or so I wasn't getting better so I concluded it wasn't going to work for me. I could be wrong but I agree with HM that you are going to know fairly quickly whether PT is going to help.

My thoughts on muscle relaxers is that if they are working, that's good. Whatever works, use it. And try the most conservative least invasive therapies first but also quit doing what caused the problem in the first place -- in other words, you probably want to give up weightlifting unless you want to take the risk of getting worse.

You can do some PT techniques on yourself but you probably want to look for some books on the subject and if you are a guy you may need to use a special wand to reach the muscles via the rectum. Some people have recommended David Wise's book A Headache in the Pelvis although it hasn't worked for everyone. Healing Pelvic Pain by Amy Stein may be helpful. Also, an initial evaluation by a PT and some guidance on which muscles to work on would be helpful.

Violet
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.
HerMajesty
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Re: I fear that I may have PN.....desperate for some help

Post by HerMajesty »

lucky wrote:Nope. Never suffered an injury. I started lifting weights, but I never hurt myself nor had any pain anywhere. My symptoms began slowly; I only had frequent urination at night, no other problems. As time went on, I developed the other ones-pain in perineum, weak stream, difficulty emptying stool, etc.
I will reiterate what Karyn said: very likely, you DID suffer an injury. I suffered a severe pelvic injury on a backpacking trip at age 14, causing major misalignment of the pelvis. I had ZERO conscious awareness of this injury at this time: Zero musculoskeletal pain, zero muscle soreness, etc. My only symptoms were urinary, becoming full-blown interstitial cystitis but the underlying injury was never diagnosed because at the time (1980's) interstitial cystitis was thought to be autoimmune.
The pelvic misalignment caused pelvic floor dysfunction over time, and I suspect it also caused the tarlov cysts which made me develop PN but all that is known about pelvic misalignment (SIJD) and tarlov cysts is that there is a correlation, no causative relationship has been proven.
Anyhow, I want you to know it is VERY possible to have a "silent" musculoskeletal injury which causes bladder and bowel dysfunction without musculoskeletal pain. SIJD is sometimes painful but is sometimes "silent" and becomes a constant drag on the pelvic floor muscles causing the various symptoms of pelvic floor dysfunction. It is a huge mistake IMO to not even get an ititial consultation with a PT, as a physician will almost never be able to identify SIJD or pelvic floor dysfunction.
Most likely the PT you looked into charges $195 for an initial evaluation, which is a comprehensive hands-on assessment and worth every penny just to rule out certain underlying causes. I doubt it is $195 per visit thereafter because after you are evaluated and a plan is made, you usually follow the plan under supervision of a PT Assistant for less $$ per session.
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.
lucky
Posts: 34
Joined: Tue Feb 18, 2014 8:56 am

Re: I fear that I may have PN.....desperate for some help

Post by lucky »

HerMajesty


Yes, you are absolutely correct. The $195 is for an initial evaluation, but every visit thereafter is $150, which is still very much outside of what I can afford. Despite my tight budget, I've really been left with no other choice than to fork over whatever amount of cash in order to treat whatever problem I have. The physical therapist with whom I am scheduled to met with is a leading expert in the pelvic floor therapy, and from what I gathered, she is very knowledgable about PN/PNE-so if the cost is going to be ridiculously high, at least I've found someone who definitely knows what they're talking about.


With respect to weightlifting, I did not know that I could suffer from an injury without noticing or feeling any of its effects. That is strange and unsettling.

I for some reason believe that if I just stop lifting weights indefinitely, I'll heal and return to normal. But this is just a theory with no evidence whatsoever. The same goes for sex and masturbation-if I just stop, then everything will be alright. At the point, I'll try anything, but I've said that over and over. Heck, I've even read countless article on how adopting a paleo diet might just do the trick.
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