can anyone help please

hi just got out hosy day care today after having a lap and a hystroscopy and found out ive got endometrosis but very much of it and they need me to go bk in 4 weeks time to get it out also i had the marina fitted and am in so much pain with it all can anyone tell me how long can it last for and how many stages does endo go in and is it life threatning thanks cheryl xx

4 Replies

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  • Hi Cheryl, sorry to hear this. I think the best thing to do is to read the information pages about endometriosis on this website:

    endometriosis-uk.org/inform...

    There is also a helpline on there and support groups too.

    Endo is a chronic condition without a cure, however it can be managed and treated. One of the ways of treating it is to use the Mirena Coil as in your case and I would search for other posts on here about this and hopefully someone can add something to here about their experiences as I haven't tried it. I think with all the treatment methods, there is always teething problems before it settles down and I have read posts about women finding that the Mirena Coil has helped them with endo after a certain period of time. Another way of treating it is surgery to excise (completely remove) the endo and in terms of going back in 4 weeks to take it out, I would find out whether the surgeon is an endo specialist at a BSGE centre or a general gynae. If it is the latter, I would think about asking to get referred to the former if possible. I have had experience with both and the endo specialist laparoscopy surgery in a BSGE centre was so much better ( it was a major op- laparotomy with the general gynae and they didn't remove all the endo).

    Alongside surgery and hormone treatments, there are ways to help in terms of diet, lifestyle, exercise and alternative remedies. There are also pain relief treatments available too.

    I realise there is a lot to take in and it is extremely daunting, especially when you are in pain from surgery and just been diagnosed. I just want you to know that you are not alone and there are people that completely understand what you are going through. I hope this helps and that the treatments work out for youx

  • thankyou so much for reading my comment yes am going to ask them for a hystorectomy now coz i did see to surgens and i ask in the first place to take it out and he said ok lets see wot the outcum is so i think they will hopefully i also sufferd from back pain and have bulging disc but the surgen said we dont no were your pains come from so i think its from the endo i never sufferd before untill i had a C section with my twins and i read abt thats were it can start from so wish me look i get it done and no more back pain and thanks again for your reply xxx

  • Good luck Cheryl, I hope you get the treatment you need and you have no more back painx

  • Hi Cheryl

    Endo has 4 stages - minimal (1), mild (2), moderate (3) and severe (4). It is not life threatening and with appropriate treatment the outlook can be very positive. But it is appropriate treatment that is vital. You will presumably have been seen in general gynaecology and they can only treat stages 1 and 2, in which case we would have expected them to have treated it at your lap. Medical treatment is only considered effective for stages 1 and 2, and for anything higher you must be treated at a BSGE centre. This is a requirement of the NHS.

    I have some posts on here including one on the treatment pathway but also have a closed FB where we can discuss surgeons and give feedback if you would like to join:

    facebook.com/groups/1148144...

    x

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