New guy looking for answers...

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New guy looking for answers...

Postby johnmsmi » Mon Nov 20, 2017 5:35 pm

Hi I'm John, 61yo male and I've been having typical PN issues for over a year now. I live in Fort Worth Texas.

I was an avid cyclist for about 20 years prior to the problems developing, and told this to every doctor who examined me. Even with this information in hand it took them over a year and numerous negative test results and even prostate surgery, to diagnose me with something called "pelvic pain." When I first heard this diagnosis I thought it was a joke, it seemed way too general to be any kind of diagnosis. And of course it is! After further research I found peripheral neuropathy, mononeuropathy, (it happens only on my left side) and looking at the nervous system I found the pudendal nerve, the source of so much pain. That's how I subsequently came to this board.

I have an appointment with a pain management clinic in a couple of months and would like some help prior to this appointment.

What Helps?
* yoga poses that target PNE?
* personal massage, specifically what and how?
* OTC besides NSAIDs?
* I noticed that an anti-inflammatory diet seems to help, any other diet options?

I found a Physical Therapist nearby that says she treats this type of issue a Dr. Woerner. Anyone have any information about physical therapy? How many treatments? how long till I can see results?

Any information will be greatly appreciated.

Thanks John
Last edited by johnmsmi on Wed Nov 22, 2017 11:12 pm, edited 1 time in total.
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Re: New guy looking for answers...

Postby Violet M » Wed Nov 22, 2017 4:52 am

Hi John,

I think you are on the right track getting an evaluation by a PT who specializes in pudendal neuralgia. There are more PT's in the Dallas area listed on our website: http://www.pudendalhope.info/node/63#TX
I can't say for sure about the yoga. Since your pain is only on the left side you have to consider whether you have a possible nerve entrapment because according to the Nantes criteria, unilateral pain is one of the indicators of possible pudendal nerve entrapment. http://www.pudendalhope.info/sites/defa ... iteria.pdf
If it were to turn out to be an entrapment of the nerve between ligaments, stretching could cause further injury to the nerve.

If you just have pelvic floor tension without a nerve entrapment it might be helpful to do pelvic floor trigger point or myofascial release via the rectum. Some guys use a special wand for this but I wouldn't be able to tell you how to proceed with that. I think you would need advice from a good PT on how to do that. You might also find some tips in Dr. Wise's book A Headache in the Pelvis.

OTC's besides NSAIDS? The only type of OTC's I found helpful were topical creams. If it's penis pain or surface testicular pain you could try a lidocaine spray like PremJact spray.

I didn't find that diet changes helped at all -- at least not immediately. I think over time a healthy diet would help inflammation, especially if your pain isn't severe or caused by a mechanical issue such as an entrapment.

I totally agree with what you are saying about a diagnosis of pelvic pain. I don't think you need a medical degree to come up with that.

Wishing you all the best with finding treatments that work for you.

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.
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Re: New guy looking for answers...

Postby johnmsmi » Wed Nov 22, 2017 6:45 pm

Thanks Violet for the info!

Getting a fix on this problem is truly a challenge.
Judging from the Nantes criteria, (thanks for providing that!), I think it more likely pudendal neuralgia, not entrapment.

I wasn't aware until I read this article that there were separate conditions with separate possible treatments.

I do not have the exclusionary criteria for neuralgia. I do have the essential, complimentary and associated criteria for neuralgia! So that's as definite as I can be, not being a medical professional. My condition being unilateral is complimentary for neuralgia.

There are 2 PTs in the Dallas area on the list and if I had more information I might consider them.

I'm reading about the myofascial release...I'm not confident I'd know what to do there...but pain is a great motivator!

I haven't tried premjact, but other topicals I have tried seem to aggravate the situation. But I have incredible allergic sensitivities.

I have Dr. Wise's book on my Kindle.

When I was a kid and had a boo-boo on my leg, I'd take it to my grandmother and she'd look at it very carefully and say, "yes, I see the problem, you have a bone in your leg."

Thanks again for the help. Knowing is extremely helpful.

John
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Re: New guy looking for answers...

Postby Violet M » Thu Nov 23, 2017 6:10 am

Hi John,

While the Nantes criteria is a rough guide for determining whether your neuralgia is caused by an entrapment, I don't agree with it entirely because in my case the pain (nerve shocks) woke me up at night. But I did fit the criteria of primarily unilateral pain and tenderness when the nerve was pressed on.

I had a friend awhile back who spoke with Dr. Wise and was advised that if PT is going to help, you will most likely see some improvement within 6 visits. I think some patients have tried it longer than that and gotten relief. Personally I knew after 1 visit in which the PT did internal myofascial release that it wasn't going to work for me because it caused a major pain flare-up that lasted a week. It was obvious to me that the nerve was already extremely irritated and that PT was just going to irritate it more. I don't know....each person is different when it comes to PT so follow your instincts but I do think you owe it to yourself to at least get a PT evaluation in case anything obvious shows up.

Anyway, I hope you can get this figured out and find some relief. Ice and/or heat can be helpful with pain relief. Are you taking any medications?

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.
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Re: New guy looking for answers...

Postby johnmsmi » Thu Nov 23, 2017 6:17 pm

Thanks again Violet...
After re-reading the Nantes criteria I realize I do have pudendal nerve entrapment. PNE

I contacted this PT nearby who says that she specializes in this sort of thing. (I think traveling to Dallas, would be extremely painful) She also says that she does "dry needling." Here's what she says:

"For PNE we perform recommendations to improve your quality of life currently, hands on manual techniques to address any connective tissue restriction, nerve glides, and increased muscle tension or spasm within the pelvic floor. These strategies can include internal rectal work so be prepared, but it is very effective. We also dry needle so if there is significant muscle tension in the abdomen, pelvic floor, or any muscle group that could be affecting the pudendal nerve we can address with FDN."

...know anything about "dry needling"?
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Re: New guy looking for answers...

Postby Violet M » Sat Nov 25, 2017 5:01 am

Hi John,

I haven't tried it myself but here is an article that describes it. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3201653/

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.
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Re: New guy looking for answers...

Postby johnmsmi » Sat Nov 25, 2017 6:35 am

Thanks again Violet!

There's a lot of information to digest...when I skipped to the summary it was overall positive, but it didn't cite any studies...hmmm.

I wouldn't expect a study based on a PNE population so that isn't a negative. I would like to know from the PNE folks on the board if they found relief.

When I have it done, I'll post the results!

John
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Re: New guy looking for answers...

Postby janetm2 » Sat Nov 25, 2017 3:10 pm

Hi John,
I haven't had dry needling but if you use the search box in the top right corner of the form and entertaining needling a bunch of posts come up. You can look through them in case the folks that have had it aren't on the forum these days. Good luck.
Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
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Re: New guy looking for answers...

Postby johnmsmi » Sat Nov 25, 2017 7:58 pm

Hi Janet, thanks.

I did the search, I couldn't find a lot that applied, but at this point it doesn't look like dry needling would make things worse...

I'm cautious and perhaps skeptical about things that have too little validation. dry needling?

Oh well, I'm not going to know unless I try it.

Thanks again, John
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Re: New guy looking for answers...

Postby Violet M » Sun Nov 26, 2017 4:58 am

Well,if dry needling is all the PT does, that might not be too great but most likely she will do more than that. Hope it goes well for you and that you gain some valuable information from your PT evaluation.

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.
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