So confused and feel full of dip air and thinking what is the point

It has been a long two and a half years of wretched right sided pain in my behind and I am struggling still, originally I was refered to dr de mello, I found his manner rather abrasive without examining me he said I definitely had right sided pudendal nerve pain and that he would perform ct guided injections but he was waiting for funding , months went by , no funding so I had to see him again and he said tough luck no funding so all he could offer was transvaginal ones only , I went for two of these , the second one was so painful I bled for three days, I decided that the third and fourth we're not going to happen as he first two never helped

Struggling in time my partner and I took information off the internet to my g.p and asked him if I could be refered to dr greenslade in bristol , he agreed so after waiting ages we went to see dr greenslade told him what had gone on , he couldn't believe I had injection transvaginally without ruling other things

First, he gave me a rectal internal but wasn't wholly convinced it was true pne

He said he felt we needed to rule out something he called a occult rectal prolapse as he felt I may have this, so he wrote to my g.p and suggested a specialist in Gateshead , a couple of weeks later my g.p rang me and said that the guy I was to be refered to had been involved in a accident and would possibly be off work for a long time, my partner and I went online and found that leeds hospital have a specialist called prof. David jayne so I had the g.p send me privately to the spire hospital to see him in the first instance, he examined me internally, he did say I had a extremely tight muscle at the back of the rectum and also a small rectocele at the front on the right side, he isn't wholly convinced it is pne either, so waited back on the nhs and had a proctogram , waited again and saw him again and he said that the proctogram has shown up the small rectocele and I have a possible in his opinion a occult prolapse but he can't understand the intensity of my right sided pain , so now I am going in the next two weeks for a Botox injection and inspection under a gen anethetic, I feel like a flipping hamster on a wheel, I am in so much pain (I have bad fibromyalgia as well) and nothing helps the pain, it creases me to sit even on a specialised cushion , I have tried gabepentin , pregabilin , god knows what else nothing helps , I am very depressed and have got to the point today that nothing is worth this pain night and day , so I am seriously thinking what the heck am I supposed to do also I can't have keyhole surgery because 5 years ago I had a bladder removal, I really feel at the end of my tether, I am not coping and the g.p says I will need to be patient as he is trying to help me but apart from going down the path I' m going down he can' t do anymore at this stage, I really feel I have lost all hope

3 Replies

  • Hi,

    You have made progress with this, so try to take heart in that. Your GP is on side by the sound of it and you have got more information about contributing factors. It's good that you can see whether Botox helps. Give it chance to have some effect though.

  • Hello I am new to this site. Have read your story and can understand your frustration..I have had vaginal pain sore urethane pain on and off for years. In January after sex I sprained my back.after few weeks it went..I was so anxious it was coming back I started clenching my pelvic floor with anxiety. I have been doing it ever since and instead of the pain I've had on and off for years it has changed to a throbbing nerve is getting worse swelling like a ball and moves to anus like a buzzing. I have not been able to sit down since January and lie down most of time..walking was ok but now that is difficult..I got a referral to dr de mello and found him very unsympathetic and was in tears..he said I have p neuralgia. I was referred to the physio at his clinic..waited months and after chasing up I saw this week..she examined me internally on the spot inside where my pain comes from and for the past few days my pain is excruciating. I cannot move.. I don't know what to do and am scared it will not settle back to the bad pain I am used to which was bad to begin with but this is wondering if this happen to you and if she had damaged me more..I think it's all the months of clenching my pelvic floor muscles which has contributed to the situation I am in now..I just thought pelvic physics are supposed to be good not make me worse..I hope you are ok.thank you for any help..

  • I am sorry for your frustration. My problem is different so there is nothing I can suggest. I just wanted to say I understand how you feel. I am in my 4th year of mind numbing pain with the loss of a very productive life. I just want to go for a walk. I hold on to the thought that someday some health practitioner will care enough to give me an answer. Good luck to you.

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