Please help

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FFSeth
Posts: 34
Joined: Wed Aug 27, 2014 5:17 pm

Re: Please help

Post by FFSeth »

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Last edited by FFSeth on Fri Oct 30, 2015 7:57 am, edited 1 time in total.
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Violet M
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Re: Please help

Post by Violet M »

Sorry, just wasn't sure if you were talking about the obturator internus or obturator externus muscle. They are 2 completely different muscles and one makes up part of the pelvic floor. But if you can't sit, what difference does it make which muscle it is anyway? Life is tough when you can't sit. Most people have no idea...

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.
FFSeth
Posts: 34
Joined: Wed Aug 27, 2014 5:17 pm

Re: Please help

Post by FFSeth »

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Last edited by FFSeth on Fri Oct 30, 2015 7:57 am, edited 1 time in total.
FFSeth
Posts: 34
Joined: Wed Aug 27, 2014 5:17 pm

Re: Please help

Post by FFSeth »

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Last edited by FFSeth on Fri Oct 30, 2015 7:58 am, edited 1 time in total.
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Violet M
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Re: Please help

Post by Violet M »

It's a tough decision because you hear conflicting things on all sides. Some doctors say you might get worse if you wait too long, but then some patients have gotten worse trying invasive therapies. If you are pain-free when standing and lying down and slowly improving it may not be worth the risk to try invasive therapies that have the possibility of causing a permanent worsening in symptoms.

Lifestyle changes might be enough to help you improve significantly but it takes a lot of patience because nerves heal very slowly. You can read KrisG's success story in the success section of the forum. I think he said it took years to heal.

So, deep aching burning pain inside the sit bones sounds similar to what I had with PN but even if it's PN, that doesn't mean it's PNE (PN with entrapment). The only reason I went for more invasive treatments including surgery was because I was in pain 24/7, couldn't sleep very well, was mostly lying down for 8 months, and I wasn't getting any better. The fact that I had mostly unilateral pain and pain along the course of the nerve was indicative of nerve entrapment according to the Nantes criteria so it made sense for me to pursue more aggressive treatment. I really didn't have much to lose. So I guess the question to ask yourself is are you willing to take the risk of getting worse and are you at a point where you feel like you don't have much to lose?

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.
FFSeth
Posts: 34
Joined: Wed Aug 27, 2014 5:17 pm

Re: Please help

Post by FFSeth »

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Last edited by FFSeth on Fri Oct 30, 2015 7:58 am, edited 1 time in total.
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Violet M
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Re: Please help

Post by Violet M »

Seth, I wish there was a way to say with certainty whether it's just nerve irritation or entrapment but I just don't know. I think it's a good sign that the pelvic floor is now relaxed and it may just take some time for the nerve irritation to heal, just as it takes time to heal after surgery. I think you said you used to lift weights, right? Lifting weights can put a lot of stress on the pelvic floor and now that you have it in a more relaxed state hopefully the nerves will calm down but as Kris's doctor told him -- it can take time for nerve irritation to heal. And you have to continue lifestyle changes on a long-term basis rather than just a few weeks or months.

With pudendal neuralgia I think it's important to have realistic goals. Based on what I have read over the years, it is probably unrealistic to have the goal of being cured and to be able to go back to all of your previous activities, including heavy weightlifting, without risking having the pain return. But I think the goal of getting the pain calmed down and being able to live an enjoyable normal life without medications, while continuing to be careful, is a realistic goal.

Please make sure you are aware of the risks involved with nerve blocks, caudal blocks, PRFA, etc. Steroids are not approved by the FDA for caudal blocks and there is a slight risk of arachnoiditis from them. Just make sure your doctor is explaining all of the risks.

Will keep you in my prayers for a miracle.

Best,

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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cpps-admin
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Joined: Tue Aug 05, 2014 8:29 am

Re: Please help

Post by cpps-admin »

FFSeth wrote:It's relaxed enough that David Wise gave me my money back because I didn't have trigger points.
That seems to conflict with some of the opinions expressed here about Dr Wise. First therapist I've heard about who refunds patients! :shock:

Seth, the nerve block may take quite a while to wear off.
I am the admin of the member forum at a chronic prostatitis (aka CPPS) website
FFSeth
Posts: 34
Joined: Wed Aug 27, 2014 5:17 pm

Re: Please help

Post by FFSeth »

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Last edited by FFSeth on Fri Oct 30, 2015 7:59 am, edited 1 time in total.
stephanies
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Joined: Mon Oct 25, 2010 3:07 am

Re: Please help

Post by stephanies »

Seth,

I think your plan is an excellent one. You are wise to listen to your body rather than have treatments that are not helping at this time.

My best to you,

Stephanies
PN started 2004 from fall. Surgery in 2006 and 2007. Pain decreased by 85% in 2009, pain returned worse in 12/13. Pain reduced again in 2023.
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