Introduction, possible PNE

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.
Susanjane
Posts: 35
Joined: Mon Sep 20, 2010 6:04 pm

Re: Introduction, possible PNE

Post by Susanjane »

Hi
I’ve been reading your posts with interest. I must say you are very enlightened, especially about yourself, which is a great start to healing. I hope you will be able to keep focussed on the mindbody stuff – have you read any books? It is well documented that there are certain personality types which may be more prone to psychosomatic illness, and some of us qualify unfortunately! We can’t help it, it’s who we are. However, once you understand and accept it, and learn ways of dealing with whatever comes along, it can be liberating. Perhaps you’ve read my success story ‘The Power of the Mind’? I certainly related to your decision to give up the cushions – I did so myself and did write a bit about that in one of my posts.

Just wanted to send a message of support and wish you luck, and don’t get disheartened if you slip back at times – it’s all part of the journey. And remember, the forum is a double-edged sword – excellent for information and support, but potentially deadly for those with anxious personalities!! A balanced view is key.

Best wishes
Susanjane
c90danwaiel
Posts: 9
Joined: Thu Sep 08, 2016 5:49 am

Re: Introduction, possible PNE

Post by c90danwaiel »

Susanjane wrote:Hi
I’ve been reading your posts with interest. I must say you are very enlightened, especially about yourself, which is a great start to healing. I hope you will be able to keep focussed on the mindbody stuff – have you read any books? It is well documented that there are certain personality types which may be more prone to psychosomatic illness, and some of us qualify unfortunately! We can’t help it, it’s who we are. However, once you understand and accept it, and learn ways of dealing with whatever comes along, it can be liberating. Perhaps you’ve read my success story ‘The Power of the Mind’? I certainly related to your decision to give up the cushions – I did so myself and did write a bit about that in one of my posts.

Just wanted to send a message of support and wish you luck, and don’t get disheartened if you slip back at times – it’s all part of the journey. And remember, the forum is a double-edged sword – excellent for information and support, but potentially deadly for those with anxious personalities!! A balanced view is key.

Best wishes
Susanjane
Hi Susanjane,
Thanks for the kind words and for the support - it really means a lot. I've been keeping up with the mind-body work for about five days now, and I'm having some interesting results (for instance, today, through conscious effort, I was able to shift the pain towards my feet for about an hour today, which has never happened before - I've never been more convinced this is psychosomatic. Wasn't so comfortable for my feet, but for about an hour, my pelvis had some relief! Was pretty amazing, and I was more than happy for the temporary tradeoff in symptoms.).

I've been gravitating towards Dr. Sarno's books, but I've downloaded a few ebooks from other authors as well. I will definitely check out your success story - excited to read it, and I'm so glad to hear you've had success yourself. I've read so many encouraging stories this past week, and I haven't been in this good of spirits for months.

Had my appointment with the sports medicine doctor today, and she seemed fairly confused about by symptoms. The fact that my symptoms weren't specific to one side, seemed to suggest either something is wrong in my spine (unlikely), or I have nerve compression on both sides of my hips (even more unlikely). It kind of confirmed my suspicions that this isn't physically based. She recommended an MRI to rule out anything, which I'll follow through with just as a precaution, but I'm moving forward with the mind-body work full-blast.

Thanks again!
c90danwaiel
Going on 10 months of being virtually free from pelvic pain after taking mind-body approach.
Susanjane
Posts: 35
Joined: Mon Sep 20, 2010 6:04 pm

Re: Introduction, possible PNE

Post by Susanjane »

I am so pleased for you c90danwaiel, especially as you are feeling so positive. Sarno is a good place to start and I can also recommend ‘The Great Pain Deception’ by Steven Ozanich which is an inspiring personal story. However, I don't believe there need be any hard and fast rules as we are all different, it's just a question of finding what works for you and it seems you are doing well already.

All the best
Susanjane
c90danwaiel
Posts: 9
Joined: Thu Sep 08, 2016 5:49 am

Re: Introduction, possible PNE

Post by c90danwaiel »

Susanjane wrote:I am so pleased for you c90danwaiel, especially as you are feeling so positive. Sarno is a good place to start and I can also recommend ‘The Great Pain Deception’ by Steven Ozanich which is an inspiring personal story. However, I don't believe there need be any hard and fast rules as we are all different, it's just a question of finding what works for you and it seems you are doing well already.

All the best
Susanjane
Hi Susanjane,

Thanks for the recommendation - I actually just bought Ozanich's book and am part way through it, and have been reading a few others as well. I'm making progress and I'm now 100% convinced without any doubt that this is psychogenic. The pain was worse the first five or so days as I was reading about TMS/Mind-body Syndrome, which I was told to expect since I heard your brain seeks to distract you from searching further (or that it could be an extinction burst, from stopping reinforcing the pain cycle by ceasing to give it attention). My pain moved around a lot too, just a few days in. It sounds bizarre, but the burning pain I've been having, ended up jumped down to my feet. By focusing on it for a few hours, I was able to keep my pain focused there, while I was free of pelvic pain. My feet were actually glowing red at the end of this, which I showed my family, who were quite shocked and startled at this. I'd told them about the mind-body approach, and they seemed skeptical up until that point.

The burning pain has also jumped up to my chest a few times as well and my arms. If I could only talk to myself two weeks ago! Not sure I'd believe myself :)

Today, I had a noticeable improvement in symptoms - a few hours completely free of pain, and it's barely there now, which is amazing, since it was horrible the first few nights. I think I'm starting to make some progress! Even before today, I was able to much better cope with my pain. Went on another bike ride today, and the pain went down during that as well. I feel like I have my life back now, and am really hopeful. I'm not thinking about my pain all day like I used to be before.

Also, I found out the same Medical facility I've been seeing urologists and other specialists at has a pain-center that takes a strong mind-body approach, led me a physician who's trained with Dr. Schubiner, who I know has done a lot of work in mind-body medicine. So I'm going to check that out next, just so I get some outside help and guidance.

Best,
c90danwaiel
Going on 10 months of being virtually free from pelvic pain after taking mind-body approach.
c90danwaiel
Posts: 9
Joined: Thu Sep 08, 2016 5:49 am

Re: Introduction, possible PNE

Post by c90danwaiel »

Hi all,

I haven't posted on here in months, and just wanted to post a final update. I remember when I was searching the web for answers, I felt a bit frustrated when someone's personal story cut off and I never knew if they'd reached any sort of resolution.

I'm happy to say I'm 99% better now. In my case, I'm absolutely convinced it was psychosomatic. The pain faded away over the course of a month. Now the pain only returns mildly when I think about it (it's starting up a little right now actually), but quickly goes away when I shift my attention away (or sometimes it occasionally pops up under times of extreme stress). Most days are pain-free and most days, I don't even notice that I'm pain-free because that's become the new normal. I'm doing everything like I used to before (riding my bike, sitting without a cushion, exercising, etc.).

Hard to believe that three months ago, I was curled up on my bed in pain all day, nonfunctional. Happy to say the mind-body approach really worked for me.

Best,
c90danwaiel
Going on 10 months of being virtually free from pelvic pain after taking mind-body approach.
Andy_Pablo
Posts: 157
Joined: Sat Oct 11, 2014 10:27 pm
Location: Devon, England

Re: Introduction, possible PNE

Post by Andy_Pablo »

That is incredible news Dan. Really really happy for you mate.

The next step is to enjoy the rest of your life with a new found enthusiasm...

Really superb news...

Andy.
Credula vitam spes fovet et melius cras fore semper dicit...
Susanjane
Posts: 35
Joined: Mon Sep 20, 2010 6:04 pm

Re: Introduction, possible PNE

Post by Susanjane »

Excellent news Dan, so pleased you found your way to recovery using the mindbody route. The mind is indeed a powerful thing! Well done. Wishing you all the best. Susanjane
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Violet M
Posts: 6651
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Introduction, possible PNE

Post by Violet M »

That's great, Dan! Glad to hear you are doing well. ;)

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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