Pelvic Pain - Healed

Thanks ezer for your encouragement.
I am struggling with CPPS / pudendal neuralgia/ PNE/ chronic non-bacterial prostatitis for nearly 1,5 years.
Symptoms of burning Pelvic area and anal sphincter, triggered mostly by sitting, urination, and BM . Also filling urinary obstruction, hesitancy.
All this trouble came last year after my wife has been diagnosed with cancer ( she's all right now thanks God ) . I became suddenly insomniac and depressed after that and 3 weeks later when I was driving my taxi I developed a strange burning on my pelvic area.

Sitting it's a life changing for me because I am driving a taxi and can't afford to change my job .

I am struggling to drive 4-5 hours a day but came back every day home in burning pain and depression. Since I discovered your success story on the internet a light of hope turned in my mind .

I had an MRI they found a little nodule 1mm length in my spine but the neurosurgeon said that's highly improbable that can cause any symptoms ( repeated MRI 6 months later with NO any structural modification found )
Also CT scan ( negative) 2 urologist visit, 2 neurologist, psychiatrist, 2 proctologist,Blood and sperm tests ( negative) .

I don't have an exact diagnosis like you had before, I am purely abandoned by doctors and been put in the pain clinic waiting list .

I am trying to treat it as TMS but I am experiencing a bunch of doubts and concern like :

- Being afraid to sit and drive, because after 30min of sitting my burning pain is getting worse and worse ...
Even when I see my taxi in the car park makes me feel a tension in my body!
Every evening when returning from work being in pain and depression. Need to take 100mg of Tramadol before bed just to be able to sleep.

- Afraid to don't make the things worse ( irreversible nerve damage etc )

- Afraid for future ( not being able to take care of my family and child ) in the case that something will happen with my wife.
I am not taking any antidepressants but sometimes I just feel I need them.

- Afraid that is something wrong with that nodule in my spine despite the neurosurgeon reassurance that there is nothing wrong.


If you have any advice for me to cope with the situation please help .

 

Hi adyxon,

I haven't been on here for over a month, but I saw your post and wanted to reply. I was diagnosed with CPPS earlier this summer (before that, non-bacterial prostatitis), and very nearly had an empirical surgery (e.g. 'hydrodissection') for pudendal nerve entrapment (because my doctor had no idea what else it could be). I went to multiple doctors, urologists, urgent care clinics, sports doctors, physical therapists, chiropractors . . . nothing really much worked, or if it did, it only worked for a short while before failing.

I'd stumped about every medical professional I saw. Around late October of this year, I very seriously considered that TMS might be at play, and started to treat it as such.

It's pretty much gone now, about two and a half months later. I may get stressed out and experience some vague burning for a half hour, but it dies down and disappears once I quit thinking about it. It continues to recede. It's only about 1/4 as bad as it was a month ago, and a month ago, it was only 1/4 as bad as it was when I first looked into TMS in October. When I do think about it, it creeps up (I can feel it a little now, haha! It's sneaky, but if I ignore it, it'll drift away).

Before, I'd only sit on a cushion and was afraid of making things worse or of causing more nerve damage. At first, because I'd conditioned myself to have more pain while I did certain triggering activities, I would feel more pain without the cushion. But enough time driving around without the cushion broke that association.

I've now ridden my bike 20 miles without any increase in pain, which, if you know what pudendal nerve entrapment is, is a fairly unthinkable activity to do. I never sit on cushions anymore, and have given away all three seat cushions I had. I'm basically back to normal. And I still can't believe that that's all happened. Just a few months ago, I was convinced I'd have a life full of chronic pain.

If I had to offer any coping advice, it would be to believe it's psychological. If your doctors have cleared you, then the key is to lose the fear of the pain. Like I said, I went from being afraid to sit at my desk for more than an hour (with a cushion) to riding by bicycle 20 miles with no change in pain. I let go of the fear and quit letting the pain take center stage in my brain.

Another bit of advice is to have patience. For a good while, I still felt the pain, but I got my life back. I felt the pain but quit thinking about the pain, and eventually, with time, it subsided. Everyone's experience is different though, and you need to be patient with yourself.

Hope that helps and you're having a great holiday season! There's a lot of great advice on this site, and you're in a good place here. I wish you all the best!

 

Thanks you very much for your reply !

I read all your posts on this forum and found that you had pretty the same symptoms ! Bloody burning !

How do you cope with this during the night while sleeping?
Your reply helps me tremendously I even considering to print it out and take it with me in my cab !

 

Hi adyxon,

One thing that helped me at night was to use a heating pad. It seemed to get rid of the burning pain pretty well and it would allow me to fall asleep. I know Dr. Sarno has theorized that low oxygen is what causes TMS pain, so I wonder if the heat caused increased blood flow that helped the pain.

The first week I found out about TMS, I'd read about TMS at night and I noticed my pain actually got worse (I heard this is not too uncommon and is your brain trying to get your focus off learning about TMS). I used the heating pad each night to counteract those flares.

Before I knew about TMS, hot water baths helped me a lot and seem to be widely recommended for dealing with prostatitis pain. I kind of see the heating pad as an extension of that. I made sure to view the pain as psychological in origin, and viewed the heat as a way to counteract the psychological-created pain of TMS.

(One thing I'd recommend is to use a heating pad that has a squeeze trigger to active it. The one I had, I needed to grip the trigger for it to heat up. That way, when I fell asleep, I'd let go and the heating pad would stay off. The heating pads with the on/off switch might be a fire hazard or might overheat if you fell asleep with them on.)

Best of luck!
c90danwaiel

 

c90danwaiel, perfect reply! so glad you almost beat it!
I have posted your reply to the chronicprostatitis site, so that others can inspire themselves.

 

This is an incredible thread and has already helped me immensely. Thank you. I know how to "think" my emotions, but am just now, after 45 years, beginning to FEEL them. I know it is what is blocking me from a full recovery. Overthinking, under-feeling.

 

I recently joined the pudendalhope forums due to PN symptoms and was in a totally depressed state learning about how I was going to have to stop biking and get used to living my life in constant pain... but then ezer directed me here and I am already feeling so much better. Accepting TMS is empowering.

I have a long way to go, but a couple things that really resonated with me.
Firstly, I have suffered from chronic inflammation for years (probably TMS related) that was never bad enough to truly cause nerve problems until 1 year ago both my arms and the left 1/2 my face started going numb. I used to be a pack-a-day gum chewer (hmmm symptom of stress...) and have damaged my left temporomandibular joint which may have put pressure on my left facial nerve. Anyway, I mostly resolved the arm and face numbness using meditation and relaxation techniques, but now my face is my gauge as to how I'm really feeling. If I am stressed my jaw will clench and face will start to go numb very quickly (although sometimes it's just a low-grade tightness that I ignore for days or weeks at a time...).

As I have been reading this thread, I feel happy and hopeful, but my face is going numb and my jaw is clenching....

Could this be why? The pain strategy is guarding itself?

Secondly -- I get angry sometimes because I'll feel like I'm dealing well with stress/life, but my symptoms will be flaring up anyway. Definitely this
↓
" If you really want to know your mind, the body will always give you a truthful reflection, so look at the emotion, or rather feel it in your body. If there is an apparent conflict between them, the thought will be the lie, the emotion will be the truth. Not the ultimate truth of who you are, but the relative truth of your state of mind at that time."

Anyway, I have a lot of work ahead of me but am so thankful to have been directed down this path!!

 

Since January I am struggling with TMS approach.
C90danwaiel , ezer and Carbonevo posts helped me immensely !
Thanks guys for your real support!

I can remember now how my CPPS started back in 2009. I was very stressed and anxious that time because the recession and suddenly became obsessed about the flu outbreak H1N1 . I went to my Gp and obsessely asked him fir flu shot. A week after my prostatitis symptoms started !

Then I am remember how I became pain free for 3 years ( despite my frequent urination during the day time , every 1,5 hour but I didn't mind)
I was convinced that time the prostate was the culprit and visited dr. Krongrad in Miami for prostatectomy. So desperate I was...
But suddenly I have changed my mind and I gave my self another year to wait. That year was crucial because I began to don't be afraid of pain and pain started to vanish. I was drinking large quantities of liquids through the day just to have reasons for go to the bathroom.
I didn't have any idea of TMS that time but involuntarily I was starting to congrate my self for getting better. I found klonopil ( rivotril ) 0.5 mg worked and mentally I was reassured that I have a pill that worked.
The first time I have got rid of depression, then ( as Carbonevo mentioned) I didn't mind about my symptoms.
The biggest step was in summer 2012 when I could drive from Dublin to Romania across the Europe. I had to stop every hour for bathroom but but I broke a huge mental barrier that I can drive and enjoy holidays. Then better and better again....
Amazingly one year later I was in holiday in USA and driving on Route66 from Chicago to LA .
At work I could drive my taxi fairly , go to the bathroom more often but who cared ?
Mentally 100% better and physically 90% ..... for more than 3 years.

Durring those 3 years I didn't wand to log in any website relating of illness just I didn't want to remember was something inside my head like a click .
I was very strong mentally and 100% convinced that I will never back in CPPS again.

The turned over came in the summer 2015 when my wife was very sick and went through the he'll with chemo and all that stuff. She is alright now and back to work thanks God !

I was very depressed and worried and the first TMS symptoms were burning in the neck and shoulders. One night I was feeling bladder fullness but I forgot about it .

I just remember one day at work I was feeling a burning pain in the pelvis , penis and rectum but this time I found relief when standing.
Then I realised that pain get worse after BM or urination

Before sleep I swallowed a rivotril and the next day I was fine. But the day after worse again.

Then I realised that those kind of symptoms where different than I got before.

Now I have genital burning pain and it's very sitting related. Specially when driving. And lost the feeling of urination. No pain with urination but pain after that. Sometimes when once triggered will still there all day. And again get worse when sitting. Ejaculation flares me up the pain as well for a day or two.

Lying on my right side when sleeping triggers my genital burning.

I had attempted dr Wise clinic last October but I failed after 2 months.

Before Christmas I found this forum thanks to Carbonevo post in chronicprostatitis.com . That was a mental challenge for me.
I found a TMS specialist here in Ireland and I had one session a week for more that 3 months.
It was helpful at the beginning but I don't think will help more from now on . I think I have learned enough from her and there is nothing more that she can do for me.

As ezer said in the other treath its up to my self to start to don't look outside my mind for answers.

It's hard to think psihologicaly when you are in pain and have urinary feeling or hesitation.
I would ask EZER to tell me if he's pain was burning and if had urinary hesitation and obstruction and getting worse by sitting or driving.
I obsessively read all his posts on pudendal hope forum and CPPS forum but I didn't find a clear picture of his symptoms.

 

My problem was burning pain on the distribution of the pudendal and dorsal nerves. No other symptom. Yeah sitting made it worse but only after I was diagnosed with PNE and was told by a so called "PN-aware" doctor to avoid sitting.
When I started practicing TMS healing, I had suddenly knee and ankle pain. The pain popped up randomly at locations of old and forgotten injuries.

Frankly don't analyze it. It is irrelevant. As long as you try to understand why a part of your body hurts you won't progress.
To this day I have no idea if it was oxygen deprivation or what not. It does not matter.

 

Thank you so much for sharing. I too was diagnosed with a whole list of pelvic pain disorders including PN. Just reading through some of your journey gives me hope...it's very empowering! TMS is hard to wrap my mind around, almost like can it really be that simple? Surely it must be too good to be true, but the more I read and study the better my life becomes. I'm off bedrest and resuming daily activity. Thanks again for being so helpful!!!!!

 

Ezer, do you have the material on wise-anderson protocol now? especially, internal trigger point technique..
If you have, could you send me the materials?
My e-mail is "gosinchon@naver.com"
Thanks.

 

wise anderson is a quack who knows that PN/CPPS are psychosomatic conditions, but can't make money from that.. therefore he combines relaxation sessions with physical therapy and called that the wise anderson protocol..
you are wasting your time going that route, read his book headache in the pelvis and you will see it's a pure advertisement for his super expensive clinic, just as the quackboard chronicprostatitis that he sponsors to send poor souls to his 7k clinic, save your money and health... going that route is a dead end.
the same applies to PN quackboards that are sponsored by quack surgeons claiming the entraped pundendal nerve is behind chronic pelvic pains..

 

Need help. Have read all TMS books
So many stressful situations in my life, including finally detoxing off pain Meds after 10 years. Horribly depressing and painful in itself. Most stressful though is simply the pelvic floor pain!
Bottom line, I read all success posts and though encouraged, my perineum/Pelvic Floor muscle pain has taken me to a deep dark level. "Feeling the pain" hasn't gotten past feeling more fear and pain.
Suggestions please! Do I need a counselor. Am I just not strong enough? It rules everything.
Only Meds seem to help. Where am I going to be when finally off them?
Need a glimmer of hope.
Thanks to all

 

First of all, there is hope! Many could get better and you will also. But I know it is difficult, especially when everything looks dark. Have you ever listened to Claire Weekes?

You can find some lectures of her on Youtube. She is not directly talking about pain, but about anxiety and fear. And usually it is fear that is feeding pain. I was also in a very dark place two years ago. I have pelvic pain, mostly bladder and urethra pain. Then, two years ago I suddenly had panic attacks. I started to takethen amitryptiline in the evening, a very low dose. And it helped me to get calmer. And then after three months I started to have a bit of a brighter look at life. Being with friends, enjoying nature, these were the things that helped me best to overcome this anxiety. It took a while before the pain subsided. It happened when I stopped thinking about it. And when I felt safe.
Now I still have flares, yes. Anxiety sometimes comes back. Right now for example, on and off pain for two months. I know that this will end. So I try to be calm. And obviously, the calmer I am the better I am doing.
If you are looking for a counselor, there is a list of therapists here on this web site.
Keep us informed how you are doing!

 

You're most kind for your reply. You're right, I know, anxiety, fear leads to tension and we all know where that leads. Just somehow gotta break this cycle. Won't bore the board with circumstances. Life has challenges for us all. But this detox deal, putting over the edge. Not good mix with TMS recovery. Thank you again for your thoughtfulness and great link

 

Interesting to me the posts for one who says that when the pain strikes, just stop, think, analyze the emotion and think psychologically about it, feel the emotion, feel that emotion as best you can.
Not being judgemental, or critical at all, ok but ...
Then there is the other school of thought from TMS's that say when the intense pain strikes, not to pay any attention to it at all, screw it, the hell with it, ignore it, Be Gone TMS pain!!
SO, which is it??

 

Thank you for the reply. So when you began practicing TMS, what did you do? I am really in a desperate state now. Don't know where to go, where to start. Still dealing with addictive pain Meds,!trying to get off, and just found out last week I lost my job due to this affliction. Hate to bleak but where do I start? I've read and "believe" the books. I really do want to live again. Please help. Thank you

 

Hi @ezer

I know in this post you say that the emotional work was all you did, asking yourself what you were feeling and sensing it in your body, over and over and nothing else, but in your success story post on the other website, TMS-Help, you talk about NET technique and also listening to audio recordings you made before sleep. Do you think these other things helped first and then the 'sensing your emotions' was just the final step?

 

Actually have not done NET technique and other recordings. Certainly open trying these. Where can I get those?
Thank you!

 

Also, Ezer, I appreciate your replies. Difficult to find Pelvic Pain sufferers like me. Like Migraine Ache in Pelvic Floor muscles area for me( perineum) and never met or spoken to anyone who has a clue what this is. Not even Physicians. So. It's a lonely road.
When extreme attacks hit, how do you handle those times?? It's deabilitating for me. You mentioned counseling helped you. Do you have specifics or any other course of action, besides my Meds which I'm trying to be rid of.
Btw, I have also experienced those specific times as yours when pain totally leaves
Thank you again!