Derek S. pudendal neuralgia

Have you done a search here and at the TMS Help site, there's been plenty written about it, the TMS gremlin plays tricks on us making us think that "our" symptom is not as popular as other's--try doing a search.

 

Yes I’ve found some of them, thanks for the suggestion.
It is a very bizarre symptom that tms gives us isn’t it?
I hadn’t seen much of people saying they had the specific symptom of numbness in the penis, and then getting better from it, so I just wanted to make sure I had something that is tms and has been treated with tms methods.

 

It’s been more than a year working TMS. Sometimes depression is worse than pain itself.
I am taking antidepressants for 6 months and I am feeling better mentally. The pain still with me and triggered by sitting , ejaculating, urination.
Just want to see if anyone got rid of pelvic pain since last year. I have read all tms books and followed few programs.
I am strongly believe that PNE/PN/CPPS is depression related.
Do I miss something? Any advice?

 

Hi,

I am sorry to hear you are struggling. My Pelvic pain is gone. The only time it shows up now is when I think about it to much or I have a really bad (negative emotion, or NO emotion) day. TMS is different for everyone and I believe there are multiple ways to heal. Here is my advice:

1. Are you meditating? This calms the nervous system and releases fear and tension in the body.

2. How often do you think about the pain? Checking in on my pelvis is still my biggest problem. My wife and I are up in San Francisco to get away from the kids for the first time in 4 years. Yesterday we walked 13 miles (insane hills) and when I would check in on my pelvis I would sometimes experience shock like symptoms (gone with the blink of an eye). The shock like symptoms are somewhat new for me but this is only because my regular pain no longer fazes me nor do I fear it. It is common for new symptoms to arrive when the original symptoms lose their power (fear). My point is, if I am (or you) always looking for symptoms or trying to measure the pain level the body will create symptoms because doing this generates fear.

3. Are you feeling your emotions? It is important that you feel your emotions as emotions are an outlet for tension in the body. What I've noticed about myself is that my chronic pelvic pain was at its worst when there was things in my life that caused overwhelming emotion that I ignored. Every day is not perfect, but my life is completely different now... It is important to feel or else your body will generate pain because if the energy of emotion is gonethen only the energy of pain will remain. It isimportant to note, TMS is different for everyone. There are many ways to heal and many theories. What works for you is what'smost important.

4. Meds might make it hard to go away. What helped me overcome my most darkest momentswith this pain was marijuana. Narcotics and Anti-depressants have the possibility of making this pain worse IMO. Antidepressants can turn you into a shell of yourself and not allow you tothink straight or feel emotions, this was just my experience and might not be like this for everyone. Narcotics are very addicting and have terrible side effects. Marijuana allowed me to bein the moment which is so important when battling TMS. But because I'm a drug addict, I had to stop because the smoking was getting out of hand. I'm happy to say that I almost have one year sober from marijuana! But, I learned a very valuable thing when smoking weed. Staying in the moment is so important, that's why the it helped me. What I have noticed isthat if I'm thinking about tomorrow, thinking about yesterday, worried about my children,scared my plane will crash, afraid I'm never gonna see my family again, afraid I'm gonna lose my job, feel like I'm not good enough, or feel like I'm getting old, then pain has theopportunity to generate. Worry = fear, fear = pain.

Hopefully you can relate with what I'm saying. I really feel for anyone who suffers with pelvic pain because there is nothing like it. It's a silent killer that can destroy people. But, you are inthe right place. Whatever you do, do not go on the pudendalhope website because that place isa nightmare. Trust me, people there have given up hope.... There is no such thing asPN/PNE/CPPS... Its all bullshit, tension and fear cause the pain.

 

Very valuable reply Chizzy.
May I ask you what kind of symptoms did you have? Mine is burning genitals while driving ...

 

The first year I had pain 24 hours a day in my whole pelvis. It felt like I had blue balls 24/7 plus an urgency to urinate. Then, the pain moved to the left side of my inner groin/testicle area and felt like a deep ache. The pain would be very similar to the way an open wound feels in salt water. I have had plenty of other symptoms like shocks or stinging in my penis, anal area etc but not a primary or consistent symptom for me.

 

Thanks for your encouraging reply chizzy. I am meditating from time to time, it really heelps.
I am taking antidepressants because before I couldn’t function properly, pain was 24 hour, but now I can sleep thanks God.
The scary thing for me it is that I am not new into TMS work, more than a year trying to work emotionally and feel emotions and sometimes I feel that I may miss something like physiotherapy just I am ridiculising myself doing emotional work and living on my own world.
When not in pain I can feel emotions very well but when pain arises I am trying to get rid of it and that’s keeping my mind busy.
Know i am pain free in the morning but the pain is getting worse as soon as I am sitting on my desk for work.
And over and over again every day . The main emotion is overwhelming and tired about process. I have periods when my depression subsides and even I am in pain I don’t want to remember or work emotionally at all. Just want to forget about everything. Feeling like out of nutshell and seeing things clearly, but when my pain or my depression came back ( they are very connected) I am feeling overwhelmed and hopeless and not motivated at all.

 

I want to jump on this thread. I am a female suffering with constant severe PNE-like pelvic pain plus widespread pain that mimics CRPS from neck to feet. Needless to say IT IS THE WORST. I have always known my symptoms had a psychological component but only recently discovered the concept of TMS though I have tried other mind body neuroplasticity programs plus psychotherapy so far to no avail.

My story is long and complicated but I want to hear from those who have healed from PNE manifestations of TMS...WHAT DID YOU DO ABOUT SITTING while healing?!? So far I have stubbornly persisted in sitting and remaining active despite my pain but it has continued to worsen and spread and I am about at the end of my rope. I know every case is different and my journey is my own but just looking for some insight into whether/how the success stories “sat through” the pain.

@ezer

 

For me, I ignore the pain when I sit (if I have pain). When I have a flare, it does not matter what I am doing, I feel it... If I worry about pain when sitting it will come on and/or get worse. Fear of and acknowledging the pain is what fuels the symptoms. Fear and worry cause tension, tension for us causes pain. PNE and PN are bogus diagnoses... Don't feed into that BS or you will increase your symptoms believing something is terribly wrong with you. Everyone can find success in their own ways, don't take one person's advice, find out what works for you. I reccomend emailing Dr. Schubiner. Email: hschubiner@gmail.com

Also, CBD is a great option for calming the nervous symptom which is where the pain generates. I recommend if things are bad.

 

Just to chime in to say that I'm with @Goshawk (lovely name, welcome!) on this. Similar symptoms with sitting, triggered by actue anal/rectal spasm - the pain from this is unbelievable) and IBS. The pain during these spasms gets to such an extreme level that my heart starts racing and I find it difficult to breathe deeply. It's as though my nervous system goes into overdrive and takes on a life of its own and my conscious mind and will simply sidelined. I also push through and continue to do what I need to do to get through the day to the best of my ability but the level of stress at times of severe flares, like this week, is unbelievable.

I wholeheartedly believe that I am dealing with TMS here (and it's taken me a couple of years of trial and error to get to this level of certainty). So maybe now the work is just beginning as belief in the TMS diagnosis is the first building block of recovery? Maybe I start by just aiming to get back to the things that just give me pleasure? Don't know. I have difficulty in identifying emotional triggers for the pain because I've had very emotionally stressful periods when there has been minimal pain, and the rectal spasms can arise out of nowhere during what outwardly are very calm times of my life.

I'm not aiming for a 100% cure but rather better skills at managing and soothing a very jangled brain and nervous system.

 

Do aim at 100%.

 

And focus on having a life - not on the symptoms! Sometimes the digging into hidden emotions etc leads you even deeper into the symptoms. Maybe more gentle with yourself?

 

This is where the TMS approach is unclear. Some say: "Focus on your life and do what you enjoy." Others say: "JOURNAL, dig up every trauma you have, be thorough". I recently asked - without an answer so far here - what you do once you found a traumatic event by journaling. I also think that thinking about all the unpleasant experiences without a resolving method serves you nothing but does a lot of additional damage to you. What comes to mind is NLP and it's trauma cure methods. So it is in the end not about journaling, but trauma resolving with nlp.

In my experience, ignoring it did not help me get better.

 

You are of course right, just ignoring it doesn’t help. What I meant is overdoing it with analyzing everything. In my case this is also a way of avoidance. The avoidance to change something.
I can’t really help when it comes to resolving methods. I always believed that uncovering the trauma and talking about it will help. I am not so sure anymore. We know now two trauma becomes part of the body and maybe methods that work on a more somatic level would help. My doctor says: turn your attention to life! I try my best. Right now I am not overly successful. Actually I am having a phase with pain and very low spirit. So, if you find an answer to your question I would be very grateful to know.