Farewell HOPE

[desperate]

Hey Everyone ,

I'm going to write this one time and then get off the forum because I realize how toxic it is here and how easily your views,opinions and beliefs can change as a result of others guesstimating everything about their bodies and their treatments.

I'm just going to share to you all my journey, my pitfalls and what I've been told what to do from the world's best therapists (and don't ask me to mention them because they do not want to be mentioned).

First things first, stretching is a HELL NO with pudendal nerve entrapment. I've been stretching ever since I found out about my compressed nerve. And what did I continue to do ? Micro tear my nerve more and more little by little. The best advice I was told was to stop stretching. For example if you had sciatica they strongly advise you NOT to stretch your hamstrings. So why is this condition any different. Your nerve needs two things to heal 1)continuous reinforcement of tissue integrity (meaning PT to release any tension around the nerve) and 2) vascularity - it neeeeeeds blood flow to heal. I've been told to do micro movement "pumping" rather than stretching to promote blood flow and tissue health. But NEVER stretching. Pelvic floor therapists don't understand that. Like the book healing pelvic pain and how you need to stretch to get better. Well that's not intended for nerve compressions. It's intended for other problems yes. But not nerve compressions. I've always been thinking I need to stretch to get better. Very wrong thing to think. This is why many people say physio doesn't help them. Bc maybe we just continue to re injure our nerves when we stretch.

I'm not better but this is what I have found out last week. Which I'm sharing with you all In the hopes that we have more success stories than failures. Because currently I'm sure a hell lot of people are stretching while doing physio and that's not the best thing. I know to you it all makes sense to stretch or else your nerve may entrap more. That's what I thought from day one also. But there's a fine line of stretching and laying down doing nothing. You can't lay in bed every second. You need to walk slowly but not too much to re injure the nerve every time. Remember, nerves have connective tissue around them just like muscles. So every time we stretch we stretch the nerve and fascia around the nerves too. How can a damaged nerve heal if it's continously stretched. I could be wrong about all of this BUT this is what I've been told by the world's best fascia experts. I'd rather trust them then people on forums and pelvic floor therapists that just recently started getting pudendal patients without knowledge of the nervous system. Do what you all want. But this is what I've been told so who knows. Maybe there is truth to it.

First things first no stretching. Second thing is fix the integrity of your pelvis. The structure. check the alignment. If your pelvis is out of alignment there will be no chance in hell you'll heal bc your pelvic floor will be continuously torqued giving more tension to your pelvic floor. When your pelvis is aligned your pelvic floor muscles relax by themselves from even walking. Sway those hips when you walk. Try not to be stiff when you walk. Walking is the best exercise. So fix that pelvis. And it's not just SIJD. SIJD is a buzz word that everyone uses. Pelvis integrity can be many components like height, tilts, torquing etc. For me I have a torqued pelvis and very poor abdominals. My abs are there...but they are apparently not efficient. They are like a slab of meat without any impact. My abs need work and not crunches. They need specific efficiency training so my abdominals can pull my pelvis upwards so it doesn't tilt down. This is just one of the complex natures of the structure of your pelvis. Anyways fix it. Takes many many treatments but it will eventually align. You need a veryyyyy knowledgeable osteopath to do this. It may take multiple osteopaths to realize which are good and which are quacks. Believe me I had to go to many therapists before I knew what to look for. Don't trust one therapists answers bc trust me I've been told by manyyyyyy therapists that my pelvis is perfectly aligned and then many that say it's terribly torqued and out of alignment. So this goes to show you how pathetic some therapists are.

Third thing, if you have a digestion problem fix that because your digestion plays a huge role with inflammation in the pelvic floor. Think about it. If your colon or intestines are inflamed so will the muscles of the pelvic floor. Google it. ..see how close all these structures are. Look at the Sigmund Colon. Anyways fix your digestion first.. If you don't want to believe this then you are stubborn and are just asking for getting worse. Who knows if fixing your digestion will get you better but not fixing it will definitely get you worse.

Lastly, body mind. Ezer spends a lot of time speaking about it. It's very important. The mind is a powerful structure that can have a direct impact on your pain threshold and can initiate flight or fight and cause your muscles to increase tension based on its remembered thought patterns. Disengage that thought pattern and like the song from Disney goes " Let it Gooooooo". Look into pain science and understand more about the mind and it's impact on pain.

Understand that there are A LOT of therapies to take advantage of. Cranial sacral, osteopathy, chiropractors, Pelvic floor physio, neural manipulation, visceral manipulation, myofascial release, rolfing, massage, active release, etc etc. Find one that works for you.

Anyways I'm off this forum because it does nothing for me but depress me and doesn't add more value to me. Know that I am NOT healed but I hope to be one day. I may not be right about anything or may be right about everything. I'm just trying to share what I learned in the year of this condition and help others understand my pitfalls and mistakes. For me it has been one person that told me if I don't stretch I will never get better. And believe me that's not true at all. Everyone reacts differently to modalities. What works for one doesn't work for another. My massage therapist told me from day one not to stretch. But I kept thinking about what that one therapist told me about stretching and it clouded my judgment from day one. And then listening to others on this forum clouded it more. Listen to your own body and nothing else. Your body will help you heal. Listen to it.

Hope all the best for everyone on this forum and I know the frustrations, depressions, anger, and loss of hope. I get it. Your not alone. There's thousands fighting the same battle. And thousands more fighting other health battles we aren't aware of. Keep your head up and try and find a modality that works for you. I hope I find mine.

Goodluck
-Dom

[Patty]

Sorry to read this. I get a lot out of your posts and clearly your a pretty smart guy. Best of luck.

[Bob123]

Hi
I find stretches that don't irritate. Also, there's good advice on this site on the 'dos' and 'donts' of exercise.

Good luck.

[ezer]

Dom, I hope you find your path to healing. Good luck.

bob123, you just joined the forum. Why don't you introduce yourself and tell us about your story. In your first post a few days ago, you alluded to a cure. Tell us more about it.

[Violet M]

Dom, I completely agree with you that stretching can be a problem if you have a nerve entrapment. That's what happened to me.

As for staying off the forum of course that is an individual choice. The primary purpose of the forum is for people to share what worked for them and find healing from sharing information. For me, the pudendal forums were invaluable in helping me find a solution and ultimately healing, but each person is different. I wish you all the best in your recovery. After you are healed, I hope you will consider coming back and telling us your success story.

Violet

[sharona]

Hi
I'm so confused.
My pelvic is not balanced (My chiro says so). He meets me 3 times a week for 3 minutes each time. Not giving me any exercise at all. I would like to do *some* kind of activity with my body - haven't done that for more thana year. Walking puts me im a lot of pain, even if very short. What kind of exersice can I do? What mussels are OK to stregnthen? What positions are OK? (Spreading the legs for example)

I'm asking as here around me PT are giving me gener exercise but I'm afraid they will damage my nerves even more. I can't tell for my self what to do or not as my situation is realy bed. Fibromyalgia and my whole body aches. And most of the time when I only feel the pain *after* (like in an internal PT work I had flare ups only the day after. didn"
'nt feel bad at all while she was inside...) So I don't even know how to start 'rehabilitation' for my week body.

Any specific training please? Specific posions to be in? How do I sit on the floor to play with my sweet baby?


Thank you so much
Sharina

[Violet M]

Sharina, swimming and upper body exercises might be good. Can you lie on a mat on the floor to play with the baby? Or maybe on the bed?

Violet

[AmER]

To bad you won't be around the forum anymore to read this, but anyway.
As a forum newbie, I'm glad I've stumbled over your post right away.
Listening to your own body is a statement I agree with. And I'm not that easely clouded by other judgements/thoughts/experiences. Trying to be openminded to it all. Fortunately, my wife happens to be a doctor, and a very vise and smart one. Like the way her mind works. Very analitic, open minded, respect the logical argument...well..not just because she's mine.

But, at some point, last night when I first took a loooong look at this forum, eventualy, it left me cloudminded and confused a bit. Made a few comments to my wife, who was watching something beside me on the TV. I obviously made a compilation of all of it, which didin't make much sense (Lyrica, and some other therapies I do use didn't help much there either), when my wife made a good comment on that and cleared my mind. Like you did yourself Dom.

It' sound, kinda, you're overreacting. A bit. Yes, I got your point, for most of it, I do agree. But, I think it could be useful, maybe, just to peak back here from time to time.
Maybe some bright, broadminding thoughts from some clever girl or a guy (like you) pop up. And broaden our own minds. Like you did here. Yes?

Thanks for sharing your story and thoughts here. Really of great value for me.

And the best of luck to find your way to your complete health as soon as can be possible. Fingers keeping crossed for all of us.

Amer

[desperate]

Hey Amer,

Quite interesting how I decided to go back on the forum to check up on things. And stumbled on your post. I guess no one truly ever leaves the forum unless they are fully cured.

Sadly the last few months have been a downhill regression even more. Cant seem to make sense of a lot of these things. Kind of feel like all my theories backfired on me.

I guess no one will reeally know if stretching works or doesnt work. No one will know if its the right or wrong thing to do. I have had a very big flare for a couple weeks now because an osteopath decided to dig around and work on my intestines. Then I was still doing psoas stretches and gooing against what my heart was telling me to do.

I think everyone in this condition gets frustrated after a point and they just go on a rampage to try anything and everything. i know for me I have been quite stupid the last few months because I have been working with an osteopath (who i really trust) since january. Probably once a week till now. And sadly, I haven't gotten any better. In fact, I feel a lot worse.

My pelvis is almost perfectly balanced except for a slight posterior tilt and anterior tilt on one side. No one can figure out why my pelvis is kind of rotating ever so slightly. This slight rotation can do wonders on your pelvic floor. I have yet to figure out my problem from a year and a half with this condition but I am a strong believer of trial and error. All it takes is finding out what works for you.

I am definitely quite interested to find out and learn some more about these restorative exercises that Dave mentioned on the forum that helped him after 14 years. Don't know how much of it I trust because he is no longer a member...i find it kind of weird how people come on here and post their success and disappear (delete their profiles). Makes me question if its legit or someone just trying to monetize on the hundreds of sufferers on here. I guess all you can do is believe them.

I was always someone that believed heavily on the theory of biomechanics and from my post above you can definitely see that even though I am not better (and a lot worse) I still believe this condition is more physical than mind body that ezer believes. Again, who knows. Different techniques worked for different people. Some got better from the mind body (ezer) approach, some got better from purely physical (konedog and Dave) but from what I can say is what works for one person may not work for another. You just need to find what works for you.

I may give this chick a try (http://www.restorativeexercise.com/study/#getstarted). Seeing how these courses are online courses It still seems kind of sketchy that someone advertised how they got cured and disappeared and deleted their profiles but I am still willing to learn more about my body.

Lately I have started journalling everyday to get out my suppressed emotions. I also was/am (I dont even know) believer of God. I am a Christian but this condition is definitely testing my faith. I find that I can not get myself to pray anymore because of the circumstances I am in but I find journalling out my thoughts is helpful. I sometimes vent out to God in these journals. Who knows if that will help.

Also, starting yesterday i am starting a new technique that I kind of made up with my gf. I tell her to run her finger very lightly all over my body and I try very hard to focus my mind wherever she is touching. I try and pay attention to the location of touch, the differences in sensation and the degree of touch. Surprisingly this technique is almost like a deep meditation bc I feel so relaxed after it. It also has a powerful effect on the mind for me bc I find its the only thing that can truly allow my brain to stop thinking about the chronic pain or other thoughts at that moment. Honestly I have no idea why I thought of this but who knows if there's any benefit. Just thought of it lol I really wonder if you can actually rewire the central nervous system like this and train your brain to forget about the pain and other sensations. By distracting yourself from the other sensations (by following the touch) you may be able to retrain your NS. I have NO flipping clue about this but again, I am trying to think of possibilities here. I am very open to trying this. If any of you want to try this feel free. And if it turns out to work I copyright the name to "Dominik therapy" lol.

I also relocated and moved from my parents house to live on my own because I felt as if my environment was toxic. It always caused me extra tension and did not allow my brain to fully relax. I feel like your environment can also impact tension in your body and mind. Look around you and see if there are things in your environment (people, places, things) that are bugging you. A friend of mine is a Rolfer and he had a client that realized that she hates her apartment and it is contributing to her pain. So she looked for a new apartment lol. Changing your environment and being comfortable is important. I love my new condo (except for the crazy loud child that runs around upstairs - I swear he sounds like Chucky running around all mental lol) and I feel a little more in peace than at my parents house.

I also started reading novels. I find reading can also be a form of meditation because instead of thinking about what your doing with your life, paying attention to the fear, the pain etc, your actually paying attention to things going on in the book. A year or so I have been reading about this stupid condition, constantly learning and educating myself about fascia, anatomy, nerves etc and I can honestly say it is a waste of time. Although I learned a great deal about the body it did nothing in terms of helping me. In fact, I feel like it made things worse. Instead, i feel like people should try and escape the thoughts of pain by meditating or reading something fun.

Other than that, nothing has changed. Hope one day I find my methodology that works for me. Hope everyone else is doing better.

-Dom

[Violet M]

Hi Dom. Sorry you had to come back since it means you aren't getting better.

Hey, I responded to the part about faith in the spiritual section of the forum.
http://www.pudendalhope.info/forum/view ... =12&t=6828

Violet