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.