IVF - problems with down regulation?

[Everhopeful35]

I started my first IVF cycle last weekend, on a long protocol. I've been down-regulating for five days now and went back in for a scan and blood test today, to see whether the drugs were working and I was ready to start stimulation. Unfortunately, my consultant said that I'm in a small percentage of people who haven't responded to the drugs and my hormones have risen. They were surprised because the scan indicated otherwise and the scanner even told me this morning that, dependent on my blood test, I looked ready to start the next phase. I'm really disheartened and my consultant now wants me to come in for another scan next week to see what's happening. They have told me to stop injecting now and will try the drugs again next cycle, but a week before my period rather than CD1. Has this happened to anyone else? I'm just very anxious to understand why this has happened! Any thoughts / past experiences would be really appreciated.

It hasn't happened to me, but I expect someone will come along who can help.
Just wanted to say when I did long protocol IVF if I remember rightly I started down regulation from day 21 of the previous cycle, which probably ties in with the plan of starting a week before your period is due.
If things don't go to plan they may consider short protocol.

It is rubbish to start and face a hurdle but it sounds surmountable!

@JeNeBaguetteRien Thanks so much for replying. Yes, I've been doing some reading and it seems standard IVF procedure starts from around a week before your period and the nasal spray is more standard than injections (I was doing injections from the start of my cycle). I'm hoping this might sort the problem. If they can't suppress my hormones with that, they have suggested a short/flare protocol, though I hear that isn't quite so successful as the long protocol?

To be honest I don't know what's more or less successful but if I had a choice I would choose short protocol every time.
Some NHS clinics prefer long protocol as it gives them more control over timings.
I had injections to down regulate, some friends used the sprays, I preferred injections actually as I knew I was getting the dose right!
For me long protocol was not good at all as down regulation shut down my ovaries so much they didn't respond to stimulation right away (though that is not common).
I've had further private treatment in the UK and Spain and it has never been suggested to try long protocol.
I suppose what I'm saying is don't go into it stressing about whether short protocol is less successful, whatever protocol gets a better response for your situation is the one to go for.

@JeNeBaguetteRien Thanks so much - I really appreciate your advice! I've had a bit of a rough ride to get to this point (I'm doing IVF as a result of repeat miscarriage) and there have been so many low points that I think I just get myself needlessly anxious about everything now. It's good to hear that different protocols work for different people and you are more pro the short protocol. Do you mind me asking whether your IVF was successful?

Sorry to hear about your miscarriages, it's no wonder that you have been feeling low.
Have you had testing as to possible causes?

I haven't been successful (yet!) but will be picking up where I left off with treatment when coronavirus happened so you never know!

Good luck 🤞 💐

Hi @everhopeful35
I'm sorry to hear you're having problems with down regging. I started my first round on ivf in October last year on long protocol and was injecting daily for 7 weeks in the end and I completely failed to down reg! Like you my hormones were rising and I ended up growing follicles on my ovaries before the cycle was cancelled.
I tried long protocol again at the end of November 2019 and unfortunately the same thing happened, my clinic were really shocked as apparently it's really rare but after another 6 weeks of injections my cycle was cancelled again.
I did an antagonist/short protocol starting in Feb this year and was so lucky that it worked first round. I'm currently almost 14 weeks pregnant and also have two embryos frozen.
I just wanted to add my story as I know how disappointing and heartbreaking it is when it seems that your treatment isn't working but please don't feel down if you end up on short protocol, sending lots of luck your way! xx

@JeNeBaguetteRien Fingers crossed for your next IVF cycle! I really hope it goes well for you. I have had the full spectrum of repeat miscarriage testing, yes, and a couple of problems were identified but after another early loss following the testing, my husband and I just wanted to try something different - maybe put ourselves in the hands of the medical professionals and see whether that made a difference. I really hope it does!
@LauraC1984 Thank you for sharing your story! It's reassuring to hear that this happens to other people too. Although it's frustrating when you're in the small percentage, isn't it?! Congratulations on your pregnancy - that's amazing!! As @JeNeBaguetteRien says, it's clearly just about getting the right protocol for you. I hope you have a happy and healthy nine months!