NHS messed up my first cycle for sure (RANT) Feedback welcome

[Cuppppatea]

The more I learn about IVF medication and protocols the more sure I am that my first cycle was totally wrong. AMH-3, FSH - 7, afc - 8

Right before i was due to start I stupidly shared my abnormal smear results with the NHS IVF clinic which advised a colposcopy. I was advised by the nurse to start my prognova tablets and reassured there would be a simple solution. I was NOT told when to stop them.

I called the nurse team to find out and was told that I needed to ‘stop them that day’ and that I would not be able to go ahead with my cycle that month. I freaked out and went mad that I was told to take the medicine if i could not go ahead, turns out that one of the consultants works across colposcosopy so fitted me in for an appointment on Saturday 26th (The day after my injection appointment)

I started progynova as advised on day 15 of my cycle - I took these for 9 days (14 - 22)

I bled on the 23rd

I did not have an appointment for scan injection teach until 25th (I was not allowed to start my injections until after my colposcopy - which she didnt need to do and said I could start)

I started injections on day 4 of my bleed! 26th - 4th 300 Meriofert (10 DAYS)

1st (DAY 6) Frymadel was introduced (5 DAYS)

5th - (DAY 11) 50000iu Gonasai Trigger injection - 21.00

6TH - Egg collection

- One follicle was dominant the whole time two were barely 18cm when they decided to do the egg collection. No response at all from my right ovary

- I developed a very sore cyst which I could feel before my second scan ( I was told I have sensitive ovaries) I have a history of cysts anyway so should not have been started so late as this leave you more prone to cysts.

At egg collection I was told my progesterone was too high for a fresh transfer (probably because of all this timing)

- My cycle was slightly shorter the past cycle so the nurse always planned for me to start on day 18. When I came on my period I called nurse as instructed and also said that i was worried that my period had come a few days early again. I suspect this nurse moved my start date earlier to compensate - BUT THIS HAD ALREADY BEEN DONE. The injection appointment stayed the same and the colposcopy appointment put this back yet another day.

- I was not even scanned until I had been taking Merofert for a week? On the night before scan on day 10 I woke that night with horrific lightning bum (Proctalgia reflux) and was told I must just have sensitive ovaries when I told the consultant it was sore.

(scan on day 7 and day 10)

- i believe starting on day 4 meant that I had a poor response and one ovarie became dominant and the rest did not recruit.

Anyway - Three eggs fertilised - one died on day two. The remaining two were let go on day 4/5 did not make it to blastocysts.

At the time I was totally clueless so just did what I was told - but looking now I can see it was all so wrong. I can’t get an accurate picture of how I actually responded which make me feel like i have nothing real to go on moving into round two. Am I a poor responder? Or is this timing all out. meds for my next round have changed alot.

Whats worse is that I’ve been told this is probably my last round on the NHS due to my AMH and FSH being on the cusp of eligibility requirements.

[Twiglet2]

I’m so sorry it didn’t work this round after all you went through to get it! Amazing they fit you in for a colposcopy so quickly and got you in the next month when this happened to me I had also started meds and then was told to stop which I was annoyed about and it set my treatment back 6 months! I don’t think you were silly to tell them about the smear though it’s much better to get the colposcopy before treatment as it could have saved your life 🤗 I did put in a complaint about starting treatment and then being stopped as they should have told me straight away as they knew the smear result the consultant did phone and apologise profusely about that.

other than starting stims on day 4 (I’m normally day 3) the rest of your protocol sounds exactly like my protocols (I’ve had 5 or 6 egg collections, including successful one).I normally have one follicle bigger than the others too (gets to like 22 whilst others are still at 17/18). I am usually same days starting fyremadel and same days for scans as you were so all sounds pretty normal in that respect but yeah a day late starting stims maybe could have affected outcome although I suspect low AMH can play a part too is what they will probably tell you. Egg collection for me is exactly 36 hours after trigger … was yours the very next day? I do get a different trigger though.

I would suggest you have lots of questions ready for your follow up consultation and don’t be afraid to complain about the false start too with miss communications! The first round can be a learning round and sounds like they have already changed things up for you. Hopefully they will allow you another round funded as you are on the cusp of eligibility and had some interruptions on your first go. I also think getting 3 eggs fertilised should go in your favour as it does show you are producing mature eggs that can be fertilised normally xx

[MrsOrangejuice]

It's incredibly frustrating and I have been furious with my NHS clinic pretty much every time I've used them - first was cancelled due to me not responding at all to the long protocol meds (they only told me this ages later, whereas at the time they just cancelled), then it was lockdowns so we lost a year, then delays, then they put me on a short protocol. Got 9 eggs but they messed up the timing of the sperm collection and only a few fertilised (again only told this 18mnths later, at the time it was put down to just one of those things). Then less than useless when I had an early loss. Then same when I went back to them privately this year for banking - absolute disaster where I got one egg and that ended in a PUL, and their aftercare was appalling. In between I went private, got 5 eggs and all went to blast and I have a LG from that, so fewer eggs but a better outcome. Every time I had one dominant follicle and bar the one disaster round, more came through and all the other follicles caught up. I also take forever to respond, and each round has been completely different, despite very similar protocols. So I think some of what you've described is sadly normal, and clinics seem to really struggle if you don't respond exactly how they expect and don't seem to have too many alternatives. I'm sure there are much better clinics and some people will have had fantastic care, but because of the unpredictability of treatment generally and with the NHS, resources and a lot of restrictions and delays, it can be an extremely frustrating and upsetting experience. We have now spent a fortune and feel like we shouldn't have even bothered with our NHS clinic, but that's hindsight and we couldn't have known. Maybe just ask to have a proper debrief with your consultant and see what they could change, what are the odds etc, and maybe also look at private if you can afford it - even just getting a second opinion can give you something to quiz your NHS clinic about, or at least give you comfort that nothing has been missed.