Has anyone had total peritoneal extraction surgery????

Hi ladies x I hope you are all as well as can be x I'm new here and hope someone can help me please. I'm 33 years old and have been suffering with endo since I was 18 years of age. I have had 7 laps and two rounds of decapeptyl injections, My consultant stopped my most recent decapeptyl injections last week as the side effects were to severe. He said that my endo is so severe that the NHS can no longer help me . A friend had previously told me of a private consultant who performs total peritoneal extractions and I mentioned this to my gynae. He said it was my only option and that he would refer me to his private clinic. We have been told that this operation could cost up to £10K and I would be obliged if anyone could advise if they have had it done and their experience of it (eg did the endo come back) before I move forward.I desperately need some help with this as I can no longer stand the pain and I'm fed up of taking morphine and other drugs which never take the pain away. Also, on another note, is anyone using Microcurrent therapy to help with pain relief?? Please help xx Thank you xxx

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  • So sorry you are suffering like this xx

    Did they mean that an NHS general Gynaecologist couldn't help you? Or have you been seeing a Specialist? Surely an NHS Endometriosis Specialist would have more answers for you than "go away and get on with it, we can't help you." You should at least have been put in touch with some sort of Pain Management Clinic.

    If you haven't been seeing a Specialist then I would suggest you/and or your GP should look into finding the nearest Endometriosis Specialist Centre to you and push your GP to get your referred there.

    Try "goggling" NHS Endometriosis Specialist Centre UK.

    Don't allow yourself to be fobbed off, leaving you as you are would be leaving you with no quality of life. (I'm also on morphine, along with Gabapentin, Tramadol, Cocodamol, Buscopan and Voltarol, and at the moment almost bed ridden, but am getting some help from Pain Management at my local Hospital, and also armed and ready to ensure I am helped at my next Gynae appointment.

    Sending love and strength to get through this. xxx

  • Please don't spend a lot of money on a private procedure which is on a website that sells it to you. Your gynae really should not encourage you to go privately. As Amb43 says Google BSGE--British Society of Gynaecological Endoscopists--there are centres all over UK where there is a team of a gynae, a colorectal surgeon for bowel involvement, a urologist for bladder problems and also a pain specialist--they all work as a team and you will get the best care. I know how tempting it is to feel that you will pay anything to get better--I know I did--but you are entitled to treatment on the NHS.

    If you find the specialist centre, you can always get a private appointment with the consultant gyne as a first consultation--you will get the time to discuss everything and then move forward from there. One private consultation does not cost the earth and I think is well worth it. Good luck--I hope you find some help soon.

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