Anyone any experience?

Hi ladies, I've just found this forum and looking for some help. I was diagnosed with severe endometriosis all over my pelvis including my bladder and bowel after 8 years of investigations, dismissals and operations, a lot of which sadly continues in my health care. I was incredibly lucky to have a successful third attempt at IVF in 2013 and was blessed with beautiful boy/girl twins. I continue tonsured with awful pain and symptoms including joint pain. Last (and fourth!) lap was Dec 2014 where excursions were made and top layer of bowel removed. I had relief for three months and was on depo at this time. By the march symptoms returned and I tried mini pill, things continued to deteriorate and in July this year I had the mirena coil fitted with high hopes. Things have gotten steadily worse and now I've been told I'm almost out of options ( loving the positivity eh?!) and been prescribed 6 months of Decaptyl which if successful will lead to surgery to remove ovaries. My question after this huge story is have any of you been told it's ok to keep the coil in during this treatment? I've been assured it's fine but always thought you shouldn't have any contraception during the treatment? Please help before I go completely insane!

6 Replies

  • Hi there, God you do sound like your going through it,

    I don't have your answer I'm afraid, but have you been being treated at a BSGE specialist centre?

    I wish you every luck, xxx

  • Hi! Thanks for replying, no I live just outside Glasgow and think the nearest centre is 60 miles away. This is a different nhs area so not sure how I would be referred or funded? Will discuss with my gp. Just couldn't believe doctors are still pedalling the old nothing more they can do line. I felt so low and I'm lucky I'm someone who knows there are options. Are these centres providing better outcomes for endo?

  • Hi there, I've been seeing a genral gyne, had a lap in April diagnosed with endo and Adenomyosis endo excised and then in July hysterectomy for the Adenomyosis, I'm still in pain so got referred to a specialist BSGE centre (50miles) as I font think my surgeon got all my endo,

    So yes I do believe it could be worth you while, don't know how you go about it in Scotland, but I think I've read that there is one their,

    My gp knew nothing about these centres so I took all the details to him and he referred me.

    I'd drive to Scotland if I thought it would help me, so bloody fed up with it all lol.

    Let me know if you need any help


  • I'm also out of options (just made a post about it)

    What is Decaptyl? Is it like prostap\zoladex?

  • Hi - you have two BSGE registered endo centres in Scotland, one in Edinburgh and one in Aberdeen. As your health boards are devolved, if a person is outside these areas then a panel considers your case to establish if it fits the criteria for referral. In England we have an NHS contract that requires what is defined as 'severe' endo, including rectovaginal endo, to be dealt with in a multidisciplinary BSGE accredited centre. This contract doesn't apply in Scotland, Wales or NI.

    However, the fall back position is that the Royal College of Gynaecologists (RCOG) which is the body ALL UK gynaecologists are registered with and with whose regulations all must comply, requires that complex endo (which would include on the bladder and bowel) must be referred to such a centre. This is confirmed here on page 30 at 10.3.6:

    This document was issued in 2008 which was before we got the list of centres published and as we now have many BSGE centres it clearly requires any and every gynaecologist to ensure that all women, including those in Scotland, Wales and NI, to be referred to a centre with severe disease. Failure to do so would be a breach of their RCOG registration and would be cause for a formal complaint to the RCOG.

    Furthermore, the General Medical Council (GMC) with whom every gynaecologist is also registered, requires that only surgeons who have completed at least two years advanced laparoscopic training, as defined by their module, must attempt such complex endo and anticipates that such surgeons will expect to head specialist centres. The training module is here and the relevant parts are mostly covered at pages 27 - 30.

    Therefore any woman in Scotland, Wales and NI with confirmed severe disease has a right to be treated in such a centre and any general gynaecologist attempting it without the required skills/training/experience would be in breach of their registration with both the RCOG and the GMC.

    The decapeptyl has been given to deplete your system of oestrogen on the basis that oestrogen drives endo and removing your ovaries and their role in producing oestrogen will resolve your problems. But unfortunately oestrogen is not only produced by the ovaries in feeding endo. There are peripheral sites in the body, predominantly adipose fat tissue, that can contribute but most significantly endo cells themselves have a very sophisticated mechanism built in to produce their own oestrogen to directly feed the endo cells. So removal of the ovaries is no guarantee that your endo will stop progressing.

    I am assuming that you have not currently been treated in either of the centres ? and so the gynaecologist who says they are out of options seems to have overlooked the only option, which is referral to a centre for complete excision. I suggest you go to your GP with copies of the relevant extracts from the above documents confirming that your stage of endo must only be dealt with in a centre and requesting a referral with this information used as the evidence that you fit the criteria.

    Come back if you have any problems. x

  • Sounds like you need some non chemical forms of healing! Wobenzym can get rid of endo and change of diet can help loads!!! Start looking online for natural ways to get rid of endo its much more effienct than the cut it out but its going to grow back methods the drs trust... Decreasing your estrogen intake gets rid of these problems a good natural progesteron cream like nat pro or fertilica will help a ton use like 4× the reccomended dose though if you read wray white she explains why good luck!

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