Hi. Can someone please help me. I was diagnosed before Christmas last year that I have survivor endometriosis, I was then on prostap injections for 6 months. After that my tummy pains are still the same. I was meant to go under the anaesthetic to have a Mariana coil to be put in but they have cancelled it once again. Can someone give me advice on what I should do or their experiences please. Thank you in advance.

10 Replies

  • Hi, I was on the same injections 3x6 months but they didn't really help with relieving the pain, they only postponed everything for a while... I tried everything and the only thing that really helped me was cutting all dairy products and starting yoga, the two helped a lot with the pain et al but they're not a cure for endo. But I believe that helped me much much more than the injections that have very heavy side effects. Hope this is helpful, good luck!

  • Thankyou so much. If its ok for me to ask. Are you on any meds or concentration as they have advised me to go in Mariana coil x

  • Hi, I'm not at the moment, I became a mother a year ago:-).

  • Hi - where did they find endo and where in the UK are you?

  • All of my tubes and its spreading towards my kidneys.. I live in carmarthenshire

  • Hi - did you have a copy of the report or is this just based on what the surgeon told you? If it is near your kidneys it is likely to involve your bladder and/or uterers which would need treatment in a specialist centre. There might be other organsinvovement and I suggest you get a copy of the report from your GP and come back. x

  • Can I be cheeky and ask how do you know this as this was not explained to me by the gynecologist?

  • Hi - it's all about anatomy. The most common sites for endo are the ovaries, tubes and then the back of the uterus, often with rectovaginal involvement. Bladder involvement is less common as is ureteral involvement, although with severe endo (which many women on here have) they will often be involved. These organs are all in the pelvis. But the kidneys are much higher up and endo on the kidneys themselves is very rare. If endo is spreading towards the kidneys then it can only do this via the ureters and if you have evidence of ureteral endo then it is vital that it is dealt with in a highly specialised centre as endo on the ureters can affect kidney function and surgery to remove endo on the ureters is extremely complex and must only be done by a surgeon with advanced training in complex laparoscopy.

    You don't have as many rights in Wales as we do in the UK, but still this must only be dealt with in a centre. You have one in Wales and women are getting referrals over the border. Click on my name and look at my post on how to find a specialist. x

  • I doubt if your gynaecologist has the breadth of knowledge that Lindle has and also some other women on this forum who have become patient experts! Strange but true.

    Many gynaecologists and GPs are also unaware of the existence of accredited endometriosis specialists.

  • Hi, I live in the same area as you and due to have an operation later this month to laser out the endo and to put in the coil. I am nervous. I have tried so much over the past 16 years and nothing has worked yet but am hopeful. I found physio helped but as I've just moved to this area I have not found a class here yet.

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