CPPS recovery

[MicheleRenee]

Hello everyone,

wow, i haven't been on this site in months... I really can't even explain how awesome that feels considering I was literally on this site everyday, multiple times a day this time last year. I started having several TMS symptoms (now looking back on my life) and eventually ended up with chronic pelvic pain, which would probably be diagnosed as "pudendal neuralgia" considering I had almost all of the symptoms. I couldn't sit without pain and muscle spasms, I was super anxious and fearful about the whole thing (honestly just look up past threads I have posted). I was in a really really dark place and even considered suicide. I knew it was TMS pretty quickly, within a few months of symptom starting. The problem was, there was SO much literature and when you're desperate you want to read everything and get healed FAST. Well, for me there was no overnight cure. I got WAY worse before I got better and had serious panic attacks about everything throughout the process of figuring this TMS thing out. The problem with TMS is that there is NOTHING to figure out, because, well... it's just a reaction of your nervous system going into fight or flight mode. Essentially, i developed a fear of fear symptoms. What I found helped me the most was a book by Paul David called "At last a life" and his second one "at Last a Life and Beyond. Also, a book called D.A.R.E. really helped me. I differ from Sarno's approach as I believe that TMS symptoms are a physical symptom of anxiety. When I accepted this (because I had a hard time accepting Sarno's theory that TMS distracts from anxiety... everyone is different). And ACCEPTED that it would take time and there would be a lot of ups and downs to heal... I felt a lot better. It took me a few months to heal and I still get little "ups" of anxiety, but nothing like it used to be. Life is amazing.

 

[ezer]

Great post. It is wonderful to hear more and more stories about CPPS healing. I just wish those awful pudendal fora would take notice.

 

[Andy Bayliss]

I differ from Sarno's approach as I believe that TMS symptoms are a physical symptom of anxiety. When I accepted this (because I had a hard time accepting Sarno's theory that TMS distracts from anxiety... everyone is different). And ACCEPTED that it would take time and there would be a lot of ups and downs to heal... I felt a lot better. It took me a few months to heal and I still get little "ups" of anxiety, but nothing like it used to be. Life is amazing.

Hi MicheleRenee,

I thank you for getting back to the Forum and letting everyone know what worked for you. Congratulations!!

Your "variation" on Dr. Sarno's theory is very interesting. Is this part of the other authors you read, or your own conclusion? I notice that you put ACCEPTED in all caps. I guess the core of your relief was actually making sense of it all for you personally. I think that almost any mind-body approach works when we personally connect the dots, and therefore "settle into" understanding.

The other part of your story which is profound is the way you worked with your fear. What did the authors say that helped you?

Andy B

 

[MicheleRenee]

Great post. It is wonderful to hear more and more stories about CPPS healing. I just wish those awful pudendal fora would take notice.

yep, that forum put me into a tailspin. But fortunately people like yourself shared your stories and It helped so much. One day I will post on there and honestly do not care if I get attacked. If it helps at least one person out of the PN hellhole it will be worth it. Thank you so much for all of your advice and sharing your story.

 

[MicheleRenee]

Hi MicheleRenee,

I thank you for getting back to the Forum and letting everyone know what worked for you. Congratulations!!

Your "variation" on Dr. Sarno's theory is very interesting. Is this part of the other authors you read, or your own conclusion? I notice that you put ACCEPTED in all caps. I guess the core of your relief was actually making sense of it all for you personally. I think that almost any mind-body approach works when we personally connect the dots, and therefore "settle into" understanding.

The other part of your story which is profound is the way you worked with your fear. What did the authors say that helped you?

Andy B

Hey Andy,

well I had always suspected my symptoms were anxiety related. I had a counselor with the Pain Psychology Center who confirmed that TMS and anxiety are essentially the same thing. TMS is just a form of anxious symptoms. For me that helped connect the dots as you say. One day I just realized that I had to let my brain and body do what it had to do and just get out of it's way. This wasn't easy at first but I kept getting results. 5 minutes there without a TMS thought or pain or symptoms. then 20. then an hr. then a few hrs. then days. then weeks. I have come into "my own" a long this journey and have been able to tackle personal habitual beliefs that were weighing me down and causing stress and anxiety. Eventually it became less about getting rid of the symptoms and more an acceptance that those symptoms were there to tell me to slow down, be kinder to myself, etc.

 

[Andy Bayliss]

Beautiful report MicheleRenee! I like this which you posted from another thread:

"you don't need to stop worrying.. you just need to stop caring that you do"

and I think "caring" also means worrying that your worrying is doing you any harm. Am I right?

Brilliant "cutting through" and "allowing!"

 

[MicheleRenee]

Beautiful report MicheleRenee! I like this which you posted from another thread:

"you don't need to stop worrying.. you just need to stop caring that you do"

and I think "caring" also means worrying that your worrying is doing you any harm. Am I right?

Brilliant "cutting through" and "allowing!"

100% right. Our minds, when in anxious states or really just in general, will play these thoughts over to keep us "safe" because it's a form of control over our situation. Yes, I believe that is a quote I grabbed from Paul David. Especially in the early stages of recovery. Your mind will still worry.... as that is the neural pathway that we have established so well over TMS and daily life problems. So let it worry... let it go a million miles an hours... let it compound thoughts on thoughts. Just let it. it needs to... for now. and eventually it will less and less... and your symptoms will lessen and there will be small glimpses of the light at the end of the tunnel. and before you know it, life is more beautiful than you could ever imagine because now you know consciousness and all thoughts thoughts and beliefs that weighed you down, even before TMS, do not matter anymore

 

[Chris GR]

Hi MicheleRenee,

Congratulations on getting better! I've had chronic pelvic pain for decades, manifest in the testicle only. Sometimes the pain disappeared for years with no explanation. Since 2014 I've been struggling with finding the correct approach. Is this a physical problem or is it TMS? The problem is the physical cause advocates (Wise/Anderson protocol) say that healing could take up to two years of daily stretching and physical therapy. I've been committed to this approach since the beginning of this year. Results so far are somewhat positive, I'm pain free about 70% of the time. One day I will have absolutely no symptoms, and if I'm lucky, this could last a week or two. But the pain always returns.

At the same time I'm thinking the PT stuff is just a placebo and holding onto this keeps my mind focused on the "topic" of pelvic pain, and this keeps the pain going. How were you able to make the firm decision to stop physical methods and have confidence in just working on your pain from a TMS perspective? I would love to banish everything related to pelvic pain and just move on with life, but my mind is telling me maybe I haven't tried hard enough to cure myself with a physical approach.

Thanks,

Chris

 

[riverrat]

Thank you for sharing. What do you think helped or does help the most for the actual anxiety. I'm sure that's what keeps it fueled for me...

 

[ezer]

MicheleRenee,

Please do post on that forum! But don't get too frustrated if you get a response in the line of "You did not suffer from PNE then, not like the rest of us".

ChrisGR,

The Wise-Anderson protocol does not address the root cause of CPPS. Yes PT and relaxation were helpful, but the pain always came back.
David Wise himself is seriously into meditation. I am sure that he can remain pain free that way.

Wise told us that we would have to do 45 minutes of meditation daily for the rest of our lives with his method. I am cured at this point and I am not doing meditation.

 

[Marinedad]

yep, that forum put me into a tailspin. But fortunately people like yourself shared your stories and It helped so much. One day I will post on there and honestly do not care if I get attacked. If it helps at least one person out of the PN hellhole it will be worth it. Thank you so much for all of your advice and sharing your story.

RENNEE

please post what you think ....I also feel that anxiety is the route of my pain.Would love to hear more

 

[Marinedad]

Hi MicheleRenee,

Congratulations on getting better! I've had chronic pelvic pain for decades, manifest in the testicle only. Sometimes the pain disappeared for years with no explanation. Since 2014 I've been struggling with finding the correct approach. Is this a physical problem or is it TMS? The problem is the physical cause advocates (Wise/Anderson protocol) say that healing could take up to two years of daily stretching and physical therapy. I've been committed to this approach since the beginning of this year. Results so far are somewhat positive, I'm pain free about 70% of the time. One day I will have absolutely no symptoms, and if I'm lucky, this could last a week or two. But the pain always returns.

At the same time I'm thinking the PT stuff is just a placebo and holding onto this keeps my mind focused on the "topic" of pelvic pain, and this keeps the pain going. How were you able to make the firm decision to stop physical methods and have confidence in just working on your pain from a TMS perspective? I would love to banish everything related to pelvic pain and just move on with life, but my mind is telling me maybe I haven't tried hard enough to cure myself with a physical approach.

Thanks,

Chris

I tried for 7 years to work on my pain with tms ...but I never had any concrete evidence for myself that it was tms..still in pain had all the medical tests done with that approach...my dr is even a tms dr and what really swayed me after 7 years of seeing him, he told me to go to a PAIN CLINIC, which really threw my belief in tms in the trash.