Fertility plan for stage 4 endo

Hi I'm, 33years old, I have suffered with serve pain from endo for 18years. But finally after 4 years of failing to get pregnant I'm finally at fertility clinic getting treatment. Currently diagnosed with 6cm chocolate cyst, the bowel, bladderand vagina show endo growths,and deep pelvic endo 1cm deep, pelvic fluid, and womb thickening, also womb pulled to the right and retroverted. endo Surgery planned To go ahead in next few months then IVF. A further referral is made to specialist clinic but will be 2years away to treat endo on other organs..... I will never be able to afford ivf privately so I really want to make the most of my only chance. I'm trying to Do a lot of research Beforehand.

My hope/thoughts:

The Dr will excise as much as he can and abalate what is around bowel, remove cyst and try to place womb back to correct position.

Im considering asking for d&c and Tubical irrigation during surgery then at least 60 days of GnRHa

Anyone any thoughts or recommend any treatments or believe anything else I could do to help the ivf be successful.

I've tried to keep this as short as possible, but still a bit long wind... sorry

Thank u xx

4 Replies

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  • It's hard - I've just had my one and only NHS funded cycle after turning down my 3rd lap for endo because of my age (40). It sounds like this is your first lap and you have time on your side but one thing I'd add is that the odds are still not over 50% that your only NHS cycle would succeed. One thing you could do, however, if you were able to squeeze in before you were 35, is egg sharing should your first cycle not succeed. I know that really is planning ahead but egg sharing would make your cycles almost free... I think you have to be realistic and think that if they're saying you need IVF, you have to count on at least 3... Abroad would be an option that is cheaper, so you may want to do that. Let me say, though, that you're doing well being so proactive and time is still on your side...

    One last thing, have you thought about getting a referral to a BSGE specialist? I've only ever had ablation on my endo (and they didn't touch most of it anyway because they were just general gynaes) but the endo board on here really advocate for getting excision on your endo as is far less likely to come back and more likely that they'll remove all of it. In fact, if bowels are involved it would be all the more reason to go to a specialist centre. Sorry to throw that in there, but maybe discuss it with your team now? And check out the endometriosis group on health unlocked too. Good luck!

  • Thank you so much you've given me some really useful info. My dr is endo specialist, but states he's still not equipment to deal with the extent of the endo in my bowel. He will excise and ablate and try to correct uterus position but has already said I will need further surgery from specialist center, I went private to bsge specialist and he has said 2years for the surgery in NI or could refer me to the mainland uk might be quicker (dr refused privately as private hospital was not equipped to deal with all the possible complications) . Im thinking excise and abalate for ivf and after that the big surgery can be done in the mainland to deal with bowel.

  • All the best - difficult decisions - fingers crossed for you x

  • Stage 4 endo should only be treated at a bgse centre. I'd get that request into your GP asap. Or you can speed the process up by paying privately on the first consult and then transferring to their nhs service.

    A general gynaecologist took out my 7cm cyst with my ovary and tube. Scan a few months later shows a 5cm mass which is either endo or remaining ovary. He never even graded or marked where my endo was.

    It's too late for me to properly get the endo resolved before ivf but will be insisting on being treated at a bgse centre after my lady bits aren't needed for ivf (hopefully about ten months from now ;-) )

    The thing to be positive about is you've found this relatively early (I'm 38) but I'd recommend seeing a properly qualified endo specialist for the lap who can look at the tubes whilst they have you under.

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