Endometriosis UK
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Do I wait or push for surgery?

Ok so had my first gynae appointment today which was I guess more positive than I expected to a degree although still no clear decisions made or 100% certain about their course of action ... they have told me I definitely have umbilical endometriosis which I knew anyway but they are almost certain after internal and external scans that it isn’t anywhere that would affect my reproductive organs which I guess is positive but because we want to have another baby they have advised that they don’t operate on me at the moment and that i should really give it my best shot to fall pregnant .. they’ve booked me an appointment for a few months time incase i haven’t fallen pregnant. I’m just terrified about having to manage this pain each month or the fact that my belly button will just end up bursting and have to be operated on anyway which will cause scar tissue and he risk of making the endo appear elsewhere and risk the chance of it affecting my other organs would you listen to their advice or push for surgery which by the way they’ve said will be up to 6 months on the nhs which is utterly nuts!! 🙄😫

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Big hugs. I'm sorry you face such a difficult dilemma. I don't think anyone can really advise you sweetie but on the face of it it sounds like you are getting good advice by your consultant. Maybe Google around and read up on umbilical endo some more and write down some questions to email to your consultants secretary?

Good luck in whatever you decide is right for you

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It's good you're getting answers and are being given options. It's a really difficult decision and I don't have umbilical endo so forgive me if I come across as ignorant. From reading your post and only knowing the information you've given it seems that trying for a baby is important to you and that you'd rather it happened sooner rather than later? I'm assuming it's safe for you to get pregnant or else they wouldn't say it's ok. As a third option you could say you want to go ahead with the surgery but still try to get pregnant and cancel the surgery if you concieve? I worry this could add unnecessary pressure though but at least you're on the waiting list for surgery. If it were me I would sit down with my partner and discuss what's more important right now then go from there.

Best of luck

Xx

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Thank you for your replies starry and Loulout it is important to us to have another baby and because of my age I don’t have too much time to waste really I’m just concerned that because they don’t know much about umbilical endo they seem to think that it’s not that serious and I should just manage the pain which so far I haven’t managed to do I know that the endo literally seems to be surrounding my belly button area as after exercising for some reason the rest of my body is flushed and hot but my belly button and surrounding area is completely white as though there’s no blood there it’s so strange ... the persons saw yesterday was booking me a further appt in 3 months time with the top consultant at the hospital are yoballowed to just email questions to them, sorry for the question I’ve never really been in this situation before? I’m just worried that i haven’t fallen pregnant yet and won’t do even after a few more months of trying as I’m concerned it’s this endo that’s causing the problem thank you for taking the time to respond xx

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I think you should tell them you want surgery. They will put you on a waiting list. If you get pregnant on the waiting list then you can cancel the surgery. If you don’t get pregnant then you are ahead in the queue for surgery and so it’s a win win!!

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I think that’s kind of what they are thinking but they want to review me in a few months I would to be able to cancel that appt due to being pregnant the docs think it will solve everything as they’ll put me straight back on the pill afterwards to stop these problems it all sounds simple when I write it down, I just hope my belly button doesn’t get too bad that they need to do something anyway I have my fingers crossed 🤞 X

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Heyy,

If you’re wanting a baby I think your main focus should be on that purely because when I had my first laparoscopy for my endo within 3months my pain got worse due to scar tissue and I was constantly on high opiate pain relief!

Since the first lap I’ve had another one to remove endo cysts due to the surgery previously.. in this lap I got told my endo had spread all behind my uterus and around my ovaries and tubes where stuck to my ovaries and onto my pelvic floor on both sides. This surgery was to only remove my cysts as general surgeons operated in emergency rather than a gynae surgeon!

I’ve now just had a laparotomy because I got more endo cysts (left and right) inside of my ovaries instead of on the side and they were growing to the point if they had burst 1) I wouldn’t have been able to have children at all and 2) it could be extremely dangerous for it to burst.. the cyst on my right was 6 by 8 and the one on my left was 10 by 9 and had pushed behind my utreus so keyhole wasn’t an option. my laparotomy removed my endo by cutting and burning and also to remove all cysts and then I’ll be on treatment to see if the endo stays away!

The issue with the surgery I’ve just had is it’s not certain my ovaries will make a full recovery and work how they should work because the Work was done inside of them instead of usually on the outside which could still be dangerous anyway!

Also, my first op was 2weeks before my 18th and 5months later was my second and then 2months later was my third.. I would do anything to be able to carry my own baby and now I possibly can’t all for a diagnosis of endometriosis.. after your first op it could be a long process so please if you want another just please take my situation of possibly not being able to have children because I pushed for the lap into consideration xxxx

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Ahh I’m sorry for all the things you’ve had to go through I have my fingers crossed for you to be able to fully heal and there’s some good news for you in the future xx I don’t really want to have any surgery if I can help it the thought of it terrifies me but I’m concerned that my bellybutton will swell so much that something quite drastic will happen to it and I’ll end up in surgery anyway. I hope they manage to get your endo under control for you xx

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I’ve had to have two emergency ops.. they’ll only do something if they really have to! And they’ll tell you if they’re concerned about it! And thankyou xxxx

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