Another day another blow: I’ve just had... - Fertility Network UK

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Another day another blow

Claredav profile image
12 Replies

I’ve just had my third cycle cancelled this year due to poor response. First cycle was short protocol and resulted in IUI due to one follicle storming ahead (it didn’t work), second was long protocol and that didn’t work as I didn’t respond enough and third cycle was short again and this time didn’t respond at all. They couldn’t understand why because my AMH when tested at the start back in Feb was 8 which is normal for my age (40 in Jan). So they tested again and I got told today it’s gone down to 1.2. I’m absolutely devastated and also so shocked at how low it’s gone since Feb. I have stage 4 endo and consultant said it could be the endo growing but I was also given buserelin in cycle two and she said that may also have caused it. I feel so let down and just don’t know what to do next :(

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Claredav profile image
Claredav
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12 Replies
Picalilli99 profile image
Picalilli99

I’m sorry I don’t have any advice but didn’t want to just read and run. I’m so sorry that you have had another cycle cancelled. We give so much physically, mentally & emotionally throughout each cycle so to get through all of that only to have it cancelled must just be so frustrating and disheartening. Sending big hugs xxxx

AuroraXen profile image
AuroraXen

Oh darling I'm so sorry to hear you're struggling. That must have been such a shock. My AMH also dropped a fair bit from first seeking help to starting my 3rd round - from about 7 to 2.9 in maybe 18 months. Makes you panic so much as you think argh, if it keeps on dropping like this there'll be nothing!! But AMH itself isn't everything, doesn't mean your eggs are about to literally run out imminently. And remember AMH isn't an indicator of quality. We may have a limited supply (but so does everyone!) but women on here with lower AMH than yours do get success. The fact you haven't had good responses to your cycles must be so upsetting though, naturally. Has your doctor thought about natural or modified IVF? Thinking of you xx

Claredav profile image
Claredav in reply toAuroraXen

Thanks for your reply lovely, your message made me feel better and I have to try and remember there is still hope, it’s just hard when you first hear it! The consultant is coming back to me with suggestions and next steps and did mention natural ivf so let’s see. It’s just annoying as the very first clinic we looked at was specialised in natural ivf but we went with our one due to their expertise in endometriosis (and high recommendation from a friend who went there) so now feels like we’ve wasted so much money and time and put ourselves through it only to now be told that would be the best route potentially. It is what it is, can’t go back now! Xx

AuroraXen profile image
AuroraXen in reply toClaredav

The money is actually what gets me the most! I feel like I'd do round after round until I dropped if I could afford it. But it's such a lot to shell out and have nothing to show for it 😕 😔 I'm glad your consultant is coming up with options... I don't know much about natural/modified IVF but do know ladies on here have had great results after 'traditional' IVF did nothing for them xx

Emma672 profile image
Emma672

Goodness I’m so sorry to hear that. I have no words of wisdom I’m afraid but I’m sending a huge hug. Sometimes we all need one of those. I hope you find a way forward ❤️

Clara22 profile image
Clara22

Hi Claredav. I’m sorry that this has been your experience, similar to you we had 3 cycles cancelled and it is so frustrating! On all rounds I had only one dominant follicle and the others were way behind and would never have caught up. We switched to timed intercourse but no luck. My AMH was 6 when tested about 18 months ago and I’m a similar age to you. The clinic were at a loss as to why this would be the case. The first clinic wanted to up the dose of meds but admitted this often doesn’t help with poor responders, so we switched clinics and are now doing natural modified IVF. We are embryo banking over 3 rounds and just completed our first successful cycle, we got 3 eggs (a win for me!) 2 fertilised and we now have one embryo frozen. Starting the second round with my next cycle so🤞We get a similar response this time. Mild and modified IVF focusses on quality of the eggs rather than quantity and so far seems to be working better for us. Good luck with your journey. Claire x

Claredav profile image
Claredav in reply toClara22

Thanks so much for responding Clara, sounds like a very similar experience! I think the natural route is what they will now suggest but I’m so upset and frustrated this didn’t come up at the start as we saw a clinic specialising in that and the one we went with seemed so much better and it’s just not been :( and now I feel we’ve wasted time and money here when we could have done what you are (we also looked at doing banking over 3 rounds). Ugh it’s so hard isn’t it, wishing you lots of luck xx

Fruitandflowers profile image
Fruitandflowers

Sorry about the cancellations. I had a cycle cancelled in early 2020 when I was 35 and they said I didn't respond (my body just 'ignored' the meds apparently). I was on the long protocol and buserelin and did not get on with those at all. Then pandemic delayed treatment for a year. Started short protocol in early 2021 on the lowest meds and again my response was poor - one dominant follicle and very few others until later - they nearly cancelled again but they upped the meds to max just in case and I stimmed for 17 days. Had a chemical from that and NHS was delayed so went private. Same thing at private who said something was 'very wrong' as I had only one very big dominant follicle at my mid scan. They said it would become a cyst and I'd waste my funding. Horrible decision but I carried on and stimmed for 17 days again. Both times we got eggs (including from the big one that had slowed, and more came through right at the end) and blasts. The clinics can't understand my response as I have a high AMH (>41, not sure of equivalent). So I don't think AMH is everything. I was very frustrated with my clinics as they just kept saying it's not a typical response so cancel, but without any good alternatives or reassurance they could make the next time different. That's partly why I just kept going even though it risked a lot. I had endo for years and I have a weird reaction to most hormones. I seem to have found a route to get eggs - despite clinic advice - but I don't think it's optimal at all. I don't know if this helps save to say don't necessarily take AMH as as the reason for poor/non typical responses, and it may be worth seeking a second opinion with a consultant (or another clinic) to see about continuing on the meds or what other forms and combinations of meds are available. I felt under a huge amount of pressure from my clinic and was made to feel pretty foolish for pushing ahead and going against their advice, but I'm 18 weeks from that x

Claredav profile image
Claredav in reply toFruitandflowers

Wow what a journey but I’m so glad you’re now 18 weeks along, how wonderful 😊 I started with short protocol and like you had one dominant follicle that got to burst point but instead of letting that go and continuing me stimming (the others weren’t as big but were growing) they did an IUI which didn’t work. My second was then long protocol where I went on the pill before and did buserelin which I do think is what has knocked my AMH back. It went on for ages too and there was slow progress so they got me to stop meds to then start again but didn’t get me to and I wish I’d pushed them to let me just carry on stimming for longer. Then this one was short again but doing oestrogen priming before and all was quiet and well at the start but then no response after 4 days so they stopped me again but again I just wish I’d pushed to carry on but you think they know best :( xx

Fruitandflowers profile image
Fruitandflowers in reply toClaredav

That sounds pretty exhausting. I had only one follicle and that was over 15mm by day 8 of meds on the last short protocol and it was only after upping meds and probably stimming another 3-5 days that more came through - we got five blasts from that. I was just so fed up by that point and I had had one previous round to go off, and no better alternative, so I just risked it. But equally I had to be prepared that I may have wasted a chance when things weren't optimal. I was also told that provided I cancelled before they got to collection, my funding wouldn't be used up so I thought it was worth continuing for a little while and then reassessing - I don't know if that's something you could consider.

Lacryacky profile image
Lacryacky

So sorry to hear that Claredav! I so feel for you, we are in the same boat. Amh dropped from 7 to 2 in 6 months ( fibroids surgery). One cycle cancelled, second we had 3 follicles, no eggs retrieved. It’s devastating. Sending you a big hug!!

Claredav profile image
Claredav in reply toLacryacky

I’m sorry for you too, it’s so so hard isn’t it? Just so exhausted and tired of being strong and positive all the time! Sending you a big hug too xx

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