Update: ultra long ICSI protocol for grade 4 endo, ended in mc

[RedA28]

Hi all

I posted quite a while ago in here and the Endo group and some people wanted to see how we got on with the ultra-long protocol of ICSI that we did (3 months or decapeptyl before starting stims).

I'll start with the 3 months of decapaptyl as that was the biggest difference! It effectively puts you into menopause for three months. I was quite worried about side effects but I think I got away with it fairly lightly. The most noticeable side effect for me was disturbed sleep - I was waking up very early (4am) wide awake. I had a few hot flushes but not too bad. And my libido went right down but the stress of IVF doesn't help on top of that! All in all, manageable.

Then the stims etc as usual. For this round I had 8 eggs collected, only 3 were mature but they all fertilised and in the end I had two embryos transferred. (This is fairly comparable to my previous short protocol rounds). 2ww was the usual agony and a couple of days before OTD I had cramps, same as every failed round so I was convinced we were out. Then the shock of the phone call on OTD with a positive beta! Obviously I was overjoyed, this was the first time I'd ever had any kind of positive test.

Unfortunately at the viability scan (6w3) we received the news that the embryo wasn't developing as it should and there was no heartbeat at that stage. We had to go back a week later for another scan where there was a heartbeat, but the embryo was still very behind. Back again for another scan a week later and unfortunately no heartbeat.

Obviously I was (and am) absolutely devastated. We were referred to the EPU and I opted for medical management as I wanted that small measure of control.

I have absolutely no idea what to do next. On the one hand getting pregnant for the first time is great progress and indicates that the surgery and/or the ultra-long protocol might be the best protocol for me but I have no idea if I can put myself through another protocol like that, let alone deal with all this again if it goes wrong.... This was my fourth round. Anyway, that's the update. Happy to chat to anyone about the protocol if helpful!

[JA-fnuk Partner Nurse Fertility Network UK]

Thinking of you Sending big hug and good luck wishes for the future Janet

[Hidden]

Hi there, I’m really sorry to hear what you have been through. I’m afraid I don’t have advice with endo but have experienced a loss at the same stage as you. Had a scan with an FH then miscarried 45 mins after the scan. It took us a while to decide whether to continue but in the end we decided to take the positives from reaching that stage & hopefully we will have better luck next time. All of the medications and constant waiting are a lot to deal with & not fun side effects but After a bit of time we were ready to take the plunge again, Good luck with whatever you decide.xx