Desperately need a good specialist in Wales/England

Hi, I have severe rectovaginal endo. Its spread to my bowels and bladder and has led to me having to catheterize constantly. Ive seen specialists in West Wales, Cardiff, Bristol and to be honest, they don't seem to know how to treat me anymore. Ive had 4 big see and treat laps, tried all hormone therapies and had all the extra little tests and scans going but not getting very far. Can anybody recommend a good endo specialist in the UK for me to see pleeease? Thankyou xx

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  • Hi - I can highly recommend mr A K Trehan who is up in South Yorkshire. He really is the best in the UK - other surgeons think this not just the patients. He is a pioneering endo surgeon and an out and out specialist at keyhole.

    I was in a complete mess with endo everywhere - including recto-vaginal, on bowel etc and gynae said my only hope was a hyster and removal of ovaries. I was traumatised by early menopause (wasn't ready to be turned into an old lady hormone wise even at 48, ha).

    To cut it short I have radical excision surgery (sometimes called total peritoneal excision). Basically the whole surface area of the peritoneum is excised - not just the endo where it is seen but everywhere. All my internals were put back in their rightful place (i.e. pelvis unfrozen) - I lost all the endo but kept everything else and not don't need hormones, or painkillers. Back to normal with no endo pain - to say I believe it is the best thing I could have done for myself is an understatement.

    He has an excellent and informative website if you just type his name in. Even if you can't get to see him, it will arm you with ideas and knowledge of what is possible. Some surgeons less skilled when you get a large ovarian endometrioma and your ovary is stuck up, will just remove the ovary but he saved mine big time.

    I hope this might help you in some way. Feel free to MP me if you want to ask anything about this type of surgery or Mr T as his ladies affectionately call him.

    I will always be grateful for what he did for me.

  • p.s. mine was on bladder too just like yours. He sorted it. He is a general surgeon as well as an endo surgeon and shaved the endo off the bowel and I avoided a bowel resection.

  • Check out the BSGE. This is the British Society for Gynaecological Endoscopy. These are centres of excellence where gynaecologists work together with a team of bowel surgeons and urologists so you get a whole team to sort out your endo. You will see from the website that they are all over the UK and are on the NHS. Don't give up--there are good doctors out there--you just have to search for them.

  • Have you seen Prof Bunkheila? He's Singleton, Neath, Swansea etc. NHS and private.

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