New Person with Pudendal Nerve Disorder

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
Rosemary
Posts: 309
Joined: Mon Dec 31, 2012 5:40 pm

Re: New Person with Pudendal Nerve Disorder

Post by Rosemary »

So pleased for you.
(I asked you once about the shockwave therapy and you gave me some information - i didn't follow it up as i am in the UK and can't find anything comparable here.)
Best Wishes
Rosemary x
kathyd
Posts: 699
Joined: Mon Dec 20, 2010 8:48 pm

Re: New Person with Pudendal Nerve Disorder

Post by kathyd »

Hi Kone
Wonderful and encouraging new
so happy for you!
Incredible!
I had a one-week visit with Dr. Andrew in2011
5 Days of treatment when he was still with his previous partner
I was able to sit a bit while there! Which I
Improved each day. We were Encouraged!
Then pain flared right before I came home
Got worse after that and bladder symptoms flared for awhile

Dr Andrew said I would need a few visits to get better
I was on the fence about it as I feel dr Andrew's previous partner went a bit too hard on me with shockwave in order to get it done in five days.
ThenDr. Andrew was banned from posting here due to some unkind remarks he made. Cant remember the details but this plus my bad flare after treatment turned me off
However he was kind to speak to my local chiropractor recently about his ART techniques. My chiro thought it interesting but he couldn't learn enough about on the phone
It's apparent that i would have to restart with Dr. Andrew in order to see progress again with this type of treatment
What also is wonderful is that your bladder is calmed-down as well -that's great! Im in an awful flair of urgency right now probably due to one of the medicine interventions tried. Bladder urge /hesitancy my symptoms began seven years ago.
After many treatments and PT etc sitting pain came on as well and later anal pain.

Quick question: I'm not sure what age you are but do you think that plays into your quicker recovery and success?
I am middle aged as are two women who I know had pretty decent success stories with Dr. Andrew 's treatment also.
Anyway something To think about. Thx for posting your story and congratulations again!
Kathy
konedog4
Posts: 192
Joined: Thu Sep 01, 2011 3:42 am

Re: New Person with Pudendal Nerve Disorder

Post by konedog4 »

I am 58 years old. I don't know if being older slows recovery from a disorder like this, but I would not doubt it. Usually, us older folks take longer to heal from any kind of injury.

I keep getting better with each passing week. I am doing things I could not even dream about doing this time last year. I shoveled the driveway of heavy wet snow today, and there is NO WAY I would have tried this last year, or a major pain would immediately be present in my perineum.

I am wondering if the traumatized pudendal nerve needed an additional year to heal? I know that if surgery is done, the docs say that a good 12-18 months is needed to feel better. Perhaps something similar to this happens with shockwave???
Anyway, it has been a year and a month since my last visit to Dr. Andrews, and I now believe I am 90% better. My entire life and attitude has turned around 180 degrees. I no longer have that feeling of despair I once had. I was so depressed a year and a half ago, that I dreaded each and every day, knowing I would be in pain, not be able to sit, not be able to do anything I once enjoyed. Now I firmly believe that with more time and more exercising and stretching, I will recover 100%.

Shockwave started my recovery. Prayer furthered it. Stretching every day helped immensely too.

I thought at one time that I would need surgery and that depressed and scared me because the surgical cure/recovery rate is so dismal. I never thought I'd get better without surgery, so that depressed me even more. Then, I came across a posting by a fellow who had gone through Shockwave with Dr. Andrews. He had gotten 80% better and had his optimism back. He encouraged me to go for it, so I did. I am so very fortunate to have taken his advice.

I don't claim that shockwave can cure or even help everyone. But it does have a good track record, just as good, if not better than surgery. So why risk surgery if shockwave has not been tried?

I wish to encourage everyone here to not give up. I once thought I'd be a partial invalid forever. Now I am 90% better and still improving. Consider every option, and then go for your recovery too.

Best wishes to one and all,

kone
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Violet M
Posts: 6714
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: New Person with Pudendal Nerve Disorder

Post by Violet M »

Yay!!! :D 8-) :D Wish someone in the US would learn how to do this from Dr. Andrew.

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.
konedog4
Posts: 192
Joined: Thu Sep 01, 2011 3:42 am

Re: New Person with Pudendal Nerve Disorder

Post by konedog4 »

Apparently, the procedure to use a shockwave machine for pudendal area has not been approved in the US. Perhaps we need to get together as a group and petition the FDA to approve this use???
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Violet M
Posts: 6714
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: New Person with Pudendal Nerve Disorder

Post by Violet M »

Interesting idea. Here's some interesting info on how to get a device approved. Doesn't look terribly easy.

http://www.patientnetwork.fda.gov/learn ... t-approved
http://www.patientnetwork.fda.gov/learn ... fda-review
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.
konedog4
Posts: 192
Joined: Thu Sep 01, 2011 3:42 am

Re: New Person with Pudendal Nerve Disorder

Post by konedog4 »

I am going to work through my two state senators and tell them how important it is to get this therapy approved in US.
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: New Person with Pudendal Nerve Disorder

Post by janetm2 »

Thanks Kone - I am sure this would help others. Keep us posted.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, 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 surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
kathyd
Posts: 699
Joined: Mon Dec 20, 2010 8:48 pm

Re: New Person with Pudendal Nerve Disorder

Post by kathyd »

Hi Kone
Just saw your post. Thx for posting this encouraging info. Im so happy for you!
I am 57 so it's great to hear that someone my age (middle-aged!) is healing well and able to do all the normal activities again. Thats wonderful.

I can really relate to how you felt in the past. You described just how I feel, depressed / scared of how Im going to get through the pain of the day.
But as parents , my husband's and my lives are very busy with kids activities; our youngest is only 14, and I must keep my spirits up.
I was encouraged also by the prayer that you believe helped you.
I have family, friends. church members etc. praying for me so I try to keep the faith!

Thx for the info on stretches. I had stopped doing them. awhile ago, but I think they could help with my current bladder flare and with my pain and tightness from being on my feet a lot.
I took a long break from PT, based on the advice of one physical therapist.Another one that knows me well, thinks I should re-start, so I may see someone local.

After hearing your success, I am going to call Dr Andrew..and check on possibly seeing him again. Will see what he has to say regarding my current situation.
It can take several visits as he said. He had told me I needed at least 3 visits,, so its something to consider.
Thx again,for posting this encouraging info, and my best wishes on your continued recovery!

Regards,
Kathy

I believe the prayers and the faith helped as welll76


I
kathyd
Posts: 699
Joined: Mon Dec 20, 2010 8:48 pm

Re: New Person with Pudendal Nerve Disorder

Post by kathyd »

Hi All
Sorry I noticed my typos... extra text at the end of my post. Pls disregard... I always miss a few typos..
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