Anyone doing IVF whilst having umbilical endrimitriotious?

[KiteRunner123]

Hi, I was recently diagnosed with umbilical endrimitriotious (the rare type) I did have a larcascopy where they lasered out some parts, they said they were old and didn’t affect my ovaries, tubes classed it as ‘mild’ etc. so we are now unexplained as to why we can’t get pregnant. Currently we have just started our second lot of injections (menapor). Was just wondering if anyone was in a similar position to me? Anything I would be so grateful as I don’t know anyone who is going through this too?

[Fleets368]

Me!!!!!!!!

I have primary umbilical endometriosis - diagnosed a few months back. Apparently not deep set but I've only had an MRI. I also have unexplained infertility and am due to start IVF in the next few weeks. So I'm a little behind you. I'm due to see a specialist on Harley Street on Friday about my endo as I was told I'd need my belly button removed completely and potentially a mesh in its place - where as the specialist is considering reconstruction, and will discuss with me whether its safe to leave it until after IVF or if I need surgery now... It's a lot! Where do you live?

[KiteRunner123 in reply to Fleets368]

Oh wow! Finally someone in the same position as me! So I had surgery he said it was mild and shouldn’t really be affecting my fertility but reffered us for IVF anyways. So Ihave also been reffered to see an endo specialist to discuss an operation where they would take the inside of the belly button out to stop the bleed(my belly button bleeds during my periods) does this happen to you? They have said for us to carry on with the ivf in the hope I get pregnant then we can sort the belly button out! Based in UK north east how about you? I feel you it’s an awful thing to go through! Iv really struggled! X

[Fleets368 in reply to KiteRunner123]

Pretty much exactly the same!!!!! I bleed through my belly from about day 1 - day 4 of my period every month. I also swell a bit and sometimes get pain in my belly button. And I have a lump in my belly button that has been growing. I've been told its not deep set so shouldn't be affecting fertility and same - been referred for IVF because in theory being pregnant will stop the bleeding. But then a different specialist wants to remove the endo before iVF in case it spreads or gets pushed out further.... so I will see when the private ridiculously expensive specialist says tomorrow. Took me weeks of research to find a handful of specialists that have seen this before and operated but I only looked in the South East - I'm just above London so have found some Oxford/Cambridge/London/Surrey people. Would be happy to exchange numbers if you want to chat! Its amazing to find someone else experiencing the same thing!

[KiteRunner123 in reply to Fleets368]

Wow! Yes I’m the same!! Bleed when I’m on sometimes it can be very little, Iv noticed it’s still been bleeding when I have been on the ivf injections. I’m hoping that pregnancy can sort it out tbf but it’s just such an awful thing. I had a good chat with a specialist but as I say can’t have that done until the ivf is done. Yes I would happy do that as I say I haven’t met anyone who is going through what I am. Love to talk more and keep you updated on my journey and vise versa! X

[Fleets368 in reply to KiteRunner123]

I tend to bleed quite a lot, especially if I move too much (i.e. do an exercise class or am lifting and shifting things). My belly button is usually full of blood and it often bleeds through my t-shirt which is so embarrassing. Underneath the large lump is a much smaller lump that is white most of the month and then turns bright red just before I start my period, bleeds, and then goes black after - I guess with dried blood in it. It's so gross. I'm new to this site - a friend going through infertility saw your post and linked me to it so I'll see if theres a way I can PM you my number. x

[KiteRunner123 in reply to Fleets368]

Yeah that’s the same with me it bleeds and goes red, sometime la I randomly get it when I’m not on a period. They removed the endo that was around the umbilical but he did say it may never stop bleeding! It’s awful as it’s something that is physically happening to your body. I think we can private message so I could give You my email so we can chat x