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New here - my story and question

 
Picture of Lou Vess
New here - my story and question
by Lou Vess - Sunday, 28 October 2018, 9:55 AM
 

Hi everyone,

I wish I could say that I'm excited to be here - as we often are on forums where we're looking to chat with people who share the same interest on whatever the forum is about - but if I had a choice, I wouldn't be here!

Very long story short - I have pudendal neuralgia. It started in January 2018 at the same time as a kidney stone, bladder infection and vaginal infection. This was just two weeks after I met a lovely man (who is still around after all this heartbreak and pain, by the way, which makes him a saint because it hasn't been easy for him).

Yes, I have tried everything - the meds, meditation, sophrology, physio, osteopathy, homeopathy, neuroplastic exercises and am waiting for an appointment with the pain clinic and the pudendal specialists. The meds (Amitriptyline) worked very well for the nerve pain. So well, that I came off them in the beginning of August because they'd made me pick up 6kg and I had the feeling that under the very meagre dose there just wasn't enough pain to justify the 7 drops of drug every day and the extra weight it was packing on. I'm 45 years old, slim and very sporty but I'm not someone who is obsessed with my weight. I've never dieted as I've always been active and I was just very uncomfortable with the extra 6 kgs all around the tummy area, and worried that it would keep packing on until I was 30kgs overweight.

The first 10 days of coming off the meds were difficult. I had pain and then...it just STOPPED for 42 days! Not completely but I remember thinking, "If this is what was under the meds, I can live with it for the rest of my life". Minor discomfort. I was so proud of myself as I had started mindfulness meditation at the same time and felt so happy and positive. I had my life back! Not the same one as before but a pretty darn good one - my partner, my children and my job.

I must add that the pain has always been in the right side of my pelvis between the hips and the vagina up towards the tummy area. This makes sex painful during a flare but possible and enjoyable when there's no flare. But, after 42 days - literally out of nowhere - (although I had been doing so well that I'd gone hiking 3 times in one week instead of the normal 1-2 times, was wearing tampons and jeans and was back into the full swing of things at work full-time for the first time since this all happened to me), the pain came back. I felt it like an instinctual twang as I was taking my makeup off one evening and I looked at myself in the mirror and thought, "What was that?" I was confident that it was a flare and that I could deal with it. Ice packs, meditation, anti-inflammatories etc... and I lasted 26 days until I became a fragile, sobbing wreck. A flare has never lasted this long, normally it's between 7-10 days, but that's when I was under meds, so maybe I just had no idea and this was the level of pain under the meds and the 42 virtually pain-free days were just the last of the meds working its way out of my system.

So, I ordered cannabis oil which I've been taking since Wednesday and it has calmed me down emotionally and it's also taken the edge off the pain, although the pain is not gone. And this is what is upsetting me - it's changed. I now have burning at the top of the sacrum where the nerve exits the pelvis and down the buttock as well as the pain I've always had that I described above. And, I can't do any physical activity because it just makes it worse! I'm also finding it difficult to sit down. I've had to change so many things and have been so patient with this medical problem, I've read Dr Sarno's book and I've done all of the other things I listed above and I cannot understand why this pain has come back and why it's become worse. Is this how neuralgia works? Does it change and get worse? And is it even neuralgia or is it in my mind?

I'm at the end of my rope. If I have to live with this, fine, but not this way. No more trail running? No problem, I'll hike. No more tight pants (and by that I mean anything that isn't pjs)? No problem, I'll wear dresses and harem pants. No more tampons? Got that covered. Sex only when it's possible? At least it's not off the cards completely. But, more pain and in a different place and now no exercise at all and difficult to drive because of the pain? That's just asking too much. I had tried to stay positive by thinking that at least I can still walk and take in nature, I can still travel around with my kids and live a little, go on holiday....I just don't know what to do now and I'm so, so tired of this. So tired of the pain. So tired of the stress. So tired of not knowing and so tired of trying to convince myself that I can do this for the next 30 years of my life without freaking out.

I also feel like I should just give up because I've been so proactive but I'm just not winning this war, am I? What now? So, as a last resort, I'm coming back to what I did before and hoping that something will work again. As I said, I read Dr Sarno's book and I remember saying to a friend that I was finding it difficult to read as it was making me uncomfortable and I didn't actually finish it. I'm going to read it again and I've also bought Unlearn Your Pain on Amazon but it won't arrive for another week normally.

I realise that I'm on a forum for the mind-body connection and that everyone here will tell me that I can get better with this method. I also realise that a lot of you will think that meeting a new man obviously had something to do with all of this and the fact that I found Sarno's book uncomfortable to read a good sign (and I really want to believe you), but I'm so tired and scared that I just don't know if I believe anything anymore.

I'd love to hear from you all though and am looking forward to your thoughts. I'd also love to hear of similar experiences if anyone has any. Or similar paths even if the manifestation wasn't the same. Thank you so much for reading this far. 

Picture of Dianna Cunningham
Re: New here - my story and question
by Dianna Cunningham - Sunday, 28 October 2018, 11:45 AM
 

Lou:

I understand the way you feel and how scared and desperate you are. I’ve been there believe me. Everyone’s path is the same and yet very different if that makes any sense. The answer to your pain lies deep down in your emotions. The reason you’re uncomfortable reading Dr. Sarno book is because you know something about it rings a bell but you can’t quite put your finger on it. Keep thinking about that. You will figure it out. Do the work of this forum and read the unlearn your pain book. Find out what stresses you out emotionally (besides being in pain). I always thought physical pain was my biggest stress factor but it wasn’t. It was all in my emotions from long ago that I buried so deep I didn’t think I could ever find them but I eventually did. Don’t ever give up Lou. The answers are there. They really are. You will find them because you have to. You don’t have a choice. And the reason the pain is in a different place is because that’s how TMS works. It moves all around til it drives you nuts! There is no logic to how it manifests physically at all. What is logical though is how your brain works to create the pain.

Do the work and the exercises. Try not to freak out. Move as much as you can. Breath deep and know that so many of us have been there. We’re behind you. You’ll get better. You have to live in the moment each and every day. It’s hard but you can do it.

Good luck!

Picture of Lou Vess
Re: New here - my story and question
by Lou Vess - Sunday, 28 October 2018, 1:40 PM
 

Hi Dianna,

Firstly, thank you for your reply. It was such a lovely one too.

When you say "do the work and the exercises", you mean the ones in the book or on this website, don't you? Unfortunately, I just cannot afford the $100 right now, so the book will have to do. I've ordered it and it should be here in the next two weeks.

I've studied how chronic pain works and I religiously applied the neuroplasticity technique. I know that the brain can create and sustain pain but I'm just not managing to calm it down this time and, I admit, I am scared out of my wits this time round. Because nothing seems to be calming it down. I'm just tired and scared of the pain right now. And I feel like it'll never go away. The CBD oil that provided some relief made me feel SO relieved because I kept thinking, "Thank god, the pain's going away, I just don't want to have to deal with it anymore."

I felt like I'd put in the work earlier on this year and was rewarded by getting a little better. This setback/flare/whatever it's called has just been such a slap in the face. And it's gotten way out of my control. I'm just scrambling to get some control again and I'm not winning.

Thank you again. x

Picture of Howard Schubiner
Re: New here - my story and question
by Howard Schubiner - Tuesday, 30 October 2018, 6:48 PM
 

Hi Lou and thanks for writing.

Dianna is completely correct in that it's our brain that is trying to protect us from something when it gives us these kinds of horrible pains.

Many people do need to face some emotional issues in their past or present to heal. But not everyone does.

The fact that you responded so well to the medication (placebo effect, most likely) and to meditation tells me that you will be fine. 

The most important thing to realize is that these setbacks are normal, common and to be expected. What you will learn in this program (from the book) is that you simply need to know for 100% that there is absolutely nothing wrong with you. You are completely healthy. These pains are caused purely by your brain and you now need to learn to stop fearing them, worrying about them, and even paying attention to them. 

As you do this, you will be empowered and free. You will use your meditative techniques to calm your brain, even when (especially when) you have pain. This will train your brain out of pain, bit by bit. 

Does this help?

Best, Howard


Picture of Lou Vess
Re: New here - my story and question
by Lou Vess - Wednesday, 31 October 2018, 9:07 AM
 

Hi Howard and thank you for taking the time to write to me.

I was wondering about your first sentence - do you think it's always a case of your brain trying to protect you or sometimes just a message gone haywire?

What I mean is this : you have pain from a UTI/kidney stone (like me) and you panic. Fear sets in. Once the infection has healed and the stone has been found and taken out, your brain doesn't turn off the pain signal, not necessarily because of fear (although that will contribute to perpetuating it in the end) but because your brain has learned the pain? Neuroplastics gone wild.

While I'm writing this, I'm thinking that this is probably what your book is about, but I haven't received it yet. So, feel free to say, "The answer to your question is in the book!"


Mount St Helens
Re: New here - my story and question
by Lor Prudhomme - Wednesday, 31 October 2018, 1:53 AM
 

Hi Lou,

So glad you shared...you sound like you are being challenged in many ways.  It’s ok to be tired and scared, we are all human.  You are here for a reason and I hope knowledge you are not alone helps you find comfort.  Keep moving and if I may suggest, get outdoors and be in the moment.  It really helps me to get outside and even just watch the clouds in the sky, feel the sun on your face, and know in that moment you are safe.

Be well,

Lor

Picture of Lou Vess
Re: New here - my story and question
by Lou Vess - Wednesday, 31 October 2018, 8:50 AM
 

Hi Lor,

Thank you for your kind words. Yes, I love being outside too. It's a pity that here at this time of the year, we've said goodbye to sunshine for a few months. I live in the French Alps and we've just changed to winter time and gotten rid of much-needed light, especially now that the sun is hiding until December-January!

x