Total Pelvic Peritoneal Excision - Has anyone had this?

Hi guys.

So I'm pretty new to this and I've seen a few people mention Total Pelvic Peritoneal Excision. I was just wondering if anyone would be helpful enough to share there experiences with me?

I've tried prostap, multiple pills and had the coil fitted in January. I'm due to see my consultant next week and the pain hasn't really changed at all. I was going to ask if this is an option, but wanted to check a few things first.

Has anyone had this procedure on the NHS?

If you have had this, have your symptoms now gone/got any better?

I'm in a situation at work where I could ask for some funding towards surgery depending on a few things but I want to know a bit more information first.

If people have had it privately, would you mind advising me on a rough cost of this?

And did you have to go see a specific consultant for this? If so, does anyone know of one around South Wales area?

Thanks guys :)

10 Replies

oldestnewest
  • Hi - with TPPE it first depends on whether it is indicated which in turn depends on where your endo is and how severe. The first place endo develops is on the peritoneum (the membrane that lines the pelvis) and when left to develop it passes through to the organs. If you have extensive endo throughout your peritoneum that has spread to multiple organs then removing the entire peritoneum along with the endo aims to take you back to square one. Since much endo can be microscopic this ensure that both visible and invisible endo are removed. The peritoneum regrows. So first can you give your history of your endo and findings at laparoscopy.

    It is a very detailed procedure that requires the greatest skill of a highly experienced surgeon. As far as I am aware there are just two who perform it - one who works only privately and pioneered it and one in the NHS and private practice. This is the website of the private one - read the treatment section. I had it done by him and am still symptom free 6 years later but my endo was post menopausal so I now have little oestrogen in my system. Clearly it has to be a personal choice if offered.

    endometriosis-consultant.co...

    It is very time consuming - my surgery was over 6 hours and in some will be longer. This obviously reflects in the cost. Whether there are time restraints on NHS treatment compared to private I don't know. The cost with the private surgeon above is likely to be around 15K if extensive endo is involved. x

  • Hi Lindle,

    Still waiting on my notes from the hospital but spoke to his secretary on Friday who said she had received the request and worst case scenario is I can pick it up when I see him on Wednesday. Better late than never!

    I have a list of questions to ask him ie what stage, how much was removed last surgery and where and if any was left.

    I went back to the doctors on Friday because I had been back on Tramadol last week to help relieve the pain and needed more. doctors refused to give me anymore Tramadol but gave me Norethisterone to take on top of the coil and told me this should relieve my symptoms and co-codamol 30/500 just in case. Still in agony today and co-codamol isn't touching it at all tbh.

    Just not sure what I can do to make it better :(

  • Can you pm me so I don't lose you. x

  • Hi,

    I have gone to appointments to the 2 doctors Lindle is mentioning in the last month.

    Please feel free to send me a private message for details on names, fees and experiences with them.

    Regards.

    Someone

  • Hi someone1986

    I was very interested to read your post re appointments to the docs lindle mentioned. May I send you a pm for details etc as well as seriously going to go down that route myself as not much joy from my consultant gynie skt68 xx

  • Hi someone 1986,

    I am very interested in your experience with those Drs too so hope you won't mind if I pm you too for further information. Many thanks xx

  • Not a problemas, sending you a pm

  • Hi someone 1986 could you send me a pm also about the two doctors please.

  • Hi. Give me a few hours and I will reply you today

  • Thank you

You may also like...