I've done my best,now I think I'll give up (pelvic pain)

[marianne]

Hi everyone,
this is my first thread on this forum. For over a year I've read a lot of discussions, but I never found the strenght to write anything. I'm actually going through a terrible pain attack and I'd really need your support, if possible.

For 2 years I've suffered from vulvodynia and for many months I regularly went to the doctor and tried every possible drug, diet, massage, etc. to feel better. I won't try to describe how terrible was to feel trapped in a body in flames, not being able to sit, walk or sleep. I even couldn't wear my underwear - and going to the toilet was a nightmare...
After 9 months of fear and wasted money, I finally heard of TMS and Dr. Sarno and, after reading The Mindbody Prescription, my pain reduced significantly. I also read The Great Pain Deception by Steve O' and, in a couple of days, I felt much better. I'll never forget what it was to read that book. I was fascinated, I devored it. I also cried because everything seemed so familiar to me. In the following months, I managed to wear trousers again, sit for many minutes (even hours!) and, moreover, I felt finally happy, hopeful and in a great mood, even if the pain was still there. I also applied for a job and got it, which enabled me to meet new people and feel even better. I was totally sure I would heal and I was greatful to Sarno, Steve O' and this forum for giving me hope after such a dark time.
I was never pain free, not even for a minute, but I never gave up.When the pain got worse, I was happy because it meant my brain strategy was not working anymore and I'll be soon be pain free. I stopped taking drugs and I started to follow all the suggestions in this website. As my pelvic pain reduced, a lot of other symptoms in other parts of the body appeared: headache, IBS, vertigo, sleep paralysis, stomachache, and so on. I also interpreted it as a good sign.

I tried to follow Alan Gordon's Pain Recovery Program and to do journaling with Dr. Schetcher's Workbook, but doing it on a daily basis made me focus too much on my pain, so I decided to forget about it completely.
14 months have passed and I'm at the point I can't sit anymore nor wearing trousers. It is as I never did anything at all. Until a couple of days ago, every time my pain got worse, I just smiled and tried to think psychologically, then I listened to my favorite music or did something I really liked and tried to live as normal as I could.
Now the pain is worst than ever and I think I can't pretend anymore that everything is alright and that I will heal. I still believe in TMS, but I don't believe in my ability to overcome it anymore. I know I'm allowing my brain to win, but I just can't help it.
I often have love problems and I'm starting to think that this could perpetuate pain (since it's pelvic pain). I'm always alone and I'm always disappointed with men. Thefact is, it seems I can't have a relationship with anyone - and not only because of my cronic pain. And, since I can't force anyone to stay with me, I'll never get better until someone will love me - this affirmation may sound crazy, but it's reality. It means, I don't own the power to heal myself and this scares me.

I don't know if what I've written makes sense (English is not my mother tongue, so I guess I made tons of mistakes, sorry), but I would appreciate every piece of advice/comment.
I don't want to give up and I can't think of living the rest of my life with this terrible pain, but I really see no way out...
Well, thank you for reading such a long thread!

 

[miffybunny]

Oh no! Definitely don't give up! You can absolutely get better! I had a similar condition (nerve pain) but not in that area. You were making progress which is PROOF that healing is more than possible!) but then you got discouraged and depressed which fueled the TMS. You definitely need more support! Have you had any therapy one on one for TMS? The depression about your situation is what is perpetuating the TMS. It always goes back to your life. I should add that I have had crazy issues in the pelvic area as well (bladder and pelvic girdle....lost of really crazy stuff). If you read my story on the success board, you will see. Anyone can get better...it just takes patience and persistence and shifting your focus to what would make you happy in your life.

 

[Mark1122]

I havent overcome TMS pain myself but i am now receiving help from a TMS psychologist and another 1. Where are you from? Netherlands maybe?

I can advise you to seek help from a professional who specializes in TMS. It is helping me a lot already with the doubts.

 

[tmstraveler]

There’s no going backward, Marianne. Your progress is there waiting for you to rediscover it and keep going. Remember that TMS pushes back especially when you’re making progress! It sucks and it feels like failure but it isn’t. You are moving forward, even if it doesn’t feel like it right now.

Have you considered working with a TMS coach? I’m working with the Pain Psychology Center over Skype and I find it really useful.

 

[miffybunny]

There’s no going backward, Marianne. Your progress is there waiting for you to rediscover it and keep going. Remember that TMS pushes back especially when you’re making progress! It sucks and it feels like failure but it isn’t. You are moving forward, even if it doesn’t feel like it right now.

Have you considered working with a TMS coach? I’m working with the Pain Psychology Center over Skype and I find it really useful.

This!

 

[marianne]

Thank you everyone for your answers, I'm sorry I write back after several days.
I really appreciate your support and suggestions, thanks a lot!

@tmstraveler I agree with you, but I still have a doubt: you said tms is pushing back maybe because I'm about to heal, but this (my feeling worse) happened a lot of times. Then I felt a bit better, then worse again, then better and so on, it seems it'll be so forever. Every time I thought I had not to give up because I was about to heal, but I never heal in the end. How can I know that this time will be the right time? I just think I will experience up and downs for the rest of my life. You may say I don't heal because I'm pessimistic about it, but this is the very first time I'm reacting this way. How can it be that I haven't healed yet, despite my efforts and positivity?
@miffybunny @Mark1122 I don't have much money, unfortunately, and I'm not fully convinced that working with a coach would be the solution. Maybe I'm wrong. But you are working with a coach and you didn't heal, did you?
I may sound too demanding, but I don't want to "feel better", I want to heal. And it's not that I'm obsessed with this idea, for a long time I lived pretending I wasn't in pain, and nothing changed...

 

[miffybunny]

Thank you everyone for your answers, I'm sorry I write back after several days.
I really appreciate your support and suggestions, thanks a lot!

@tmstraveler I agree with you, but I still have a doubt: you said tms is pushing back maybe because I'm about to heal, but this (my feeling worse) happened a lot of times. Then I felt a bit better, then worse again, then better and so on, it seems it'll be so forever. Every time I thought I had not to give up because I was about to heal, but I never heal in the end. How can I know that this time will be the right time? I just think I will experience up and downs for the rest of my life. You may say I don't heal because I'm pessimistic about it, but this is the very first time I'm reacting this way. How can it be that I haven't healed yet, despite my efforts and positivity?
@miffybunny @Mark1122 I don't have much money, unfortunately, and I'm not fully convinced that working with a coach would be the solution. Maybe I'm wrong. But you are working with a coach and you didn't heal, did you?
I may sound too demanding, but I don't want to "feel better", I want to heal. And it's not that I'm obsessed with this idea, for a long time I lived pretending I wasn't in pain, and nothing changed...

There were a lot of things that stood out to me in what you wrote. Before I address those things though, I wanted to reassure you that I did heal and I did have therapy which was very helpful. I needed the support and the in depth therapy. A TMS coach may not be enough but a TMS therapist would be ideal.

1.) Healing is not a linear process. It's totally normal to have setbacks, get discouraged, feel defeated and think that somehow you are beyond help. These thoughts and feelings are temporary though, and they are not truth.

2.). When you get frustrated because you're not "better yet",what you are doing is reinforcing the TMS. The faster you want to get better the longer it will take. This is why the concept of outcome independence is key to healing. The goal is not to "try" or make "efforts" or to be "positive". The goal is to be indifferent to the pain and to focus on living your life as your authentic self. There must be an entire shift of thought and being. The focus must shift from the physical to the psychological. The more you "try" to be "positive" the more you are working against the process and the more you are in a state of resistance. You are essentially fighting yourself. It's impossible to be positive when you are in pain. It is possible however, to become neutral and neutralize the TMS strategy until it gradually fades out. Full healing is absolutely possible for EVERYONE. No one is excluded or different.

There were too many times to count in my journey when I felt hopeless and doomed. At a certain point I had to stop fighting and let go. I had to say "F*** it". How do I really want to live my life? I was creating the pain and so I could uncreate it. I wasn't this victim of an outside force or entity terrorizing me. That was an illusion. The truth was, everything was coming from within me and only I had the power to change my life, my reactions and myself.

There is no way I would have gotten better without support and therapy. My pain was a very extreme nature and I could visually see it as well. The way my legs looked would depress me terribly. The depression and FEAR around these issues were so strong that I needed help. I also needed to face the emotions I had been repressing and suppressing for years. Once I dealt with those, it communicated a message to my brain "I can handle these horrible thoughts and scary emotions, so you don't need to distract me with pain anymore". I had to be extremely patient and persistent, until it sort of became automatic. It was a letting go and getting rid of layers of crap that had obscured my true self from myself for too long. It was not about "trying" or "doing" or "being positive" (which would have been totally fake for me). It was about accepting, allowing and saying "whatever happens, I'm going to handle it but I'm not going to worry about it now".

Your condition is not unique and it very much IS TMS. I had the exact same thing but in my feet and knees and even full body at one point. Another piece of advice I would give you is to avoid groups like "Pelvic pain Sster warriors" and message boards and gynecologists and neurologists like the PLAGUE. They will only reinforce your pain and make you more depressed. If I had continued to read about RSD/CRPS I would have jumped off a building. I saw horrible cases in person and read about amputations and suicide etc etc etc. I had to wipe all of that out of my mind because those poor souls did not understand that it was TMS and it was within their ability to heal.

I hope that helps clarify some of your doubts and questions!