Any advice?

[kastale]

Hey, I've just joined this on a whim hoping to get some adivce or something ha!

Well...I got told I have endometriosis a few months ago I kind of knew ages ago but things at the hospital are just starting to come together and we have been discussing my surgery for a while now. I have a heart condition and so they have to have meetings with the cardiac people and I've recently been reffered for more meetings with a new gynocolgist in the new year.

They've told me I have a 10cm cyst on my left ovary and a few smaller ones on my right and my endometriosis is starting to thicken around the bottom of my bowels (so it could be worse - thank god!) but I'm scared for surgery on my cysts I really don't want to lose any of my ovary the gyno I saw suggested this new treatment called "Ovarian Tissue Removal" but its new and has a lesser sucess rate than just egg freezing, I suggested this to them and they said due to my heart problem sometimes egg freezing medication can cause complications. In all honesty I don't overly care about carrying my own child I just want the option in the future to have a kid that is mine and whoever I end up with. I'm 24 and I don't really want to be put on menopaulsal medication and I'm pretty regular with my periods and such I don't want to mess my hormones up.

One other thing I'm worried about is the risks of surgery, I know they have to tell you all the worst things that could happen but the colostomy bag thing really freaked me out (I apolsogise in advance if this has happened to someone I dont mean it to offend). Surgery really frightens me and they will most likely have to do an open surgery as with my heart condition its more dangerous for keyhole as they have to blow your stomach up.

Does anyone have any IVF advice or experience - and has anyone here had the surgery and could just tell me its all okay?! haha I hate it honestly I know for me it won't be for a while and I haven't had a flare up since April but knowing I need to make these choices soon is on my mind recently and this seems like a good place to ask

[Smuggle]

Hi - are you being seen in a specialist endo centre in tertiary care as is required? If you are in England this is the specification:

england.nhs.uk/commissionin...

[kastale in reply to Smuggle]

Hi, erm no I don't think so I know it sounds stupid, but i'm actually not sure, I got sent to Derby hospital endo specialist but then due to my heart problem (and because I had a emergancy flare up) got send to my birmingham hospita,l where they deal with my heart and then from theyre they sent me to the gyno place in birmingham because they had a specialist who does endo and heart care (this is the guy i am being reffered to in the new year) but i've never heard of what your linking me to?

(Also if this doesnt make sense im sorry i suck at writing)

[Smuggle in reply to kastale]

Women with severe endo (which includes such large endometriomas and bowel involvement) must only be treated in a specialist endo centre that works to BSGE standards (British Society of Gynaecological Endoscopy). There is one at Birmingham Women's under Mr Yousri Afifi so hopefully you are in the centre?

[kastale in reply to Smuggle]

Yes Afifi was the man I was under however, he can only do keyhole surgery and I need open surgery (they think) as its dangerous to have keyhole with my heart condition.

He was the man who suggested the Ovarian Tissue Removal

[Smuggle in reply to kastale]

But hopefully he can save some of your ovaries so you might be jumping the gun with IVF?

[kastale in reply to Smuggle]

I agree, its just it was him who suggested at the same time as my surgery to do the ovary tissue removal and to me i just worry that it suggests my ovary is in abit of trouble - I don't know if i can even afford it either, I just - I know I may be freaking myself out but I want the best chance to have my ovaries and eggs as safe as possible and I'm not 100% sure he will be doing my surgery becuase of the type of surgery I'll be having. We got told he only does keyhole?

[Smuggle in reply to kastale]

Oh I see, so you are looking into the ovarian tissue preservation privately for the future. It may well be that the surgeons in the centres are only skilled in lap surgery, you obviously have quite a complex and different situation. But it does sound like you are in the right place. Honestly though, with lap surgery colostomy is almost only ever temporary and as long as the surgeon you have doing open surgery is highly skilled I shouldn't think the risks would be any greater.

[Smuggle in reply to kastale]

I'm not sure if ovarian cryopreservation is available on the NHS for endo - just cancer patients as I'm aware - but an advanced excision surgeon should be able to save your ovaries or part of.