Dear Melodyrose,
I don't normally write on these websites but I read your last message about the burning pain that you have.
I had a very similar totally horrific pain after I had my son Felix in 2007. My episiotomy totally broke down due to infection and the stitches were removed, a truly hideous experience. I spent years in torturous pain due to 'pudendal neuralgia.'
The reason I wanted to message you was that I was originally treated by Michelle Fynes and a chronic pain consultant, but it got to the point where no-one could help me.
Michelle referred me to Dr Baranowski at the Hospital for Neurology in central London. In fact, I was so desperate that I saw him privately at great expense but it was the best decision I could have made.
He asked me a few pointed question and within minutes, he had diagnosed me with pudendal neuralgia- damage to the pudendal nerve down below. That's what the burning pain was. My husband used to come home from work and find me standing with a carving knife saying I wanted to cut that bit of me out.
Anyway, I had tried Amitriptyline in such a massive dose that I passed out immediately and Felix just had to fend for himself in his cot.
He put me on a paediatric size dose instead and I titrated up to 20 mg per night. I can't remember if I was already on Gabapentin at that point, but Dr Baranowski also prescribed it. I worked my way up to the highest dose possible. The combination gave me some relief but I was in pain all the time for years.
I would totally recommend that you look up Dr Baranowski (Paul) I think. It changed my life.
But I still can't sit down normally 6 years after I had Felix. I use a valley cushion all the time, although increasingly I can sit for longer on The Tube to work or on a normal chair.
I weaned myself off all the tablets when Felix was 3 years old because we did IVF agin twice to try for another baby. Felix took 6 goes at IVF. Once I was off the drugs, I couldn't tell the difference and I think time had helped to heal the nerve damage. Sadly, had another miscarriage and we didn't have any more children. And yes, doing all the IVF procedures well hell!
Will never forgive the team who were supposed to be looking after me after I had Felix. My life was extremely difficult for many years. But Dr Baranowski sees pain in a very different way. I saw a psychologist who really helped. I could have had more steroid type nerve block injections but I refused because they seemed to make things worse for me.
I wish you lots of luck and hope this helps you. I also hope that,like me, time is a healer. You learn to live differently. I still have to be very careful but at least now I don't think about how much pain I'm in for every waking minute. I was very lucky that when lying on my side, the pain pretty much went. So we had to have help in the house all the time.
I could go on and on but please look him up on google and perhaps he can help you.
Lots of love