Making this post because when I was searching I couldn’t find anyone who had a similar experience to me to get an idea of what to expect.
My experience doing IVF as a woman with pcos and a very high AMH.
Diagnosed with PCOS at 16 ! Irregular to no periods. Insulin resistant pcos
BMI 25 - 5ft 4 - I’m also of Caribbean descent.
Found out I have blocked fallopian tubes in 2022 so IVF was my only choice.
First egg retrieval in 2021 .. this was a freeze all for frozen follicle stash “private” I did a freeze and share programme.
31 years old
- First Egg retrieval - 53 follicles
- Mature follicles 35 mature follicles
Meds-
- Rekovelle 7.33ug - 6 days then Rekovelle 8ug for a further 6 days.
I don’t remember what my trigger medication was.
Second egg retrieval (nhs) because I had frozen eggs privately, I lost one of my nhs funded cycles. It’s a bit of a grey area because it wasn’t technically an ivf cycle. so if I need a third nhs cycle I would need to appeal and see if they allow it.
However if I hadn’t told the NHS I had privately frozen follicles they would not have known, so whether you decide to tell them about a previous frozen egg cycle or not is up to you.
Turned 33 years old 2 days before my egg retrieval.
Second egg retrieval (NHS) 2024
- 13 days of stims - 150 fostimon for 7 days and then 225 fostimon for 6 days.
Side effects - No bloating or pain until the day of my egg retrieval but I did get bad headaches and insomnia throughout stims.
Was slightly uncomfortable waiting for retrieval but it wasn’t too bad. My ovaries were a little sore, very slow walking was all I could manage.
I’m pretty sure I walked to the hospital and I was okay. (I live close to my local hospital/fertility clinic)
- 77 follicles
- 21 fertilised
- 3 made it to blasts by day 5 - 5AA,5AA,4AA
Because of how many follicles I had I was not allowed a fresh transfer, I had to continue fyremadel for another 4 days to reduce risk of ohss.
My nhs clinic got its license suspended for losing frozen eggs.
I was informed of this two days before my egg retrieval so I had no choice but to go ahead with retrieval.
The costs and stress of moving my embryos to another clinic was too much so I waited for them to open back up about 9 months later. A lot of new staff when I went back and the new nurses were amazing.
My 3 FET transfers were unsuccessful, I had two miscarriages.
35 years old
Second ivf cycle: 2026 (but third egg retrieval)
Meds - Gonal F pre loaded injection pen and fyremadel
Gonal f dose - 187.5 for 10 days increased to 225 for 3 days
On day 13 of stims they wanted me to continue for another 3 days I said no. By that point I could just about walk, I was unable to use the toilet properly due to my full ovaries and couldn’t sleep or sit down comfortably at all due to the pain.
The scan on day 13 was unbearable I barely got through it.
I would not have made it another 3 days. The pain increased just before I needed to do my trigger injection and i’m so glad I stuck up for myself.
I don’t know what was different this ivf cycle, maybe it was the medicine choice, the dose, maybe I had bigger follicles this time or maybe the trigger ? But I was in so much more pain this time.
Pain the day of egg retrieval was horrible from 4am to 9:30am I was in incredible pain I could barely walk I was stuck between needing to go to the toilet, throwing up, hunger and passing out.
No idea how my partner got me to the hospital I could barely function enough to walk and every bump in the car was traumatic. I could not sit upright and I had to ask a nurse if she could possibly take me to a bed while I waited.
Got moved to a reclining chair and I writhed around in pain from 8:30am to 9:30am in too much pain to even scroll on my phone! I stared at a clock on the wall for an hour 😅 thankfully everyone was running on time (hospital staff were amazing) and I was laying in the theatre by 9:40am ready to go.
After retrieval I was of course in way less pain, walked home from the hospital with my partner as it was a 7 min walk home. Light spotting afterwards I think I wore a pad for about 2/3 days. Sent home with fyremadel and clexane.
(This round they did icsi)
Collected: 77 follicles
Mature: 50
Fertilised: 40
Day 3 - 40 still developing
Day 5 - 17 blasts frozen 23 still developing
Day 6 - extra 5 blasts frozen
Altogether 22 embryos frozen
Stomach stayed quite bloated for about 5 days, my ovaries felt a lot better by day 4.
The pain was definitely worth never having to do another egg retrieval again, my partner and I only plan on having two children so I think we have enough embryos to get there.
Quick round up:
AMH : 2024:- AMH 148
1st ER
Meds : rekovelle, fyremadel - trigger: ?
Length of stim - 12 days
Follicles : 53
Mature follicles: 35
Blasts - did not fertilise, just froze follicles
2nd ER:
Meds: fostimon, fyremadel - trigger: Decapeptyl
Length of stim: 13 days
Follicles: 77
Blasts: 3 blasts - 5AA, 5AA,4AA
3rd ER :
Meds: Gonal f, fyremadel - trigger: Buserelin
Length of stim: 13 days
Follicles: 73
Mature follicles: 50
Blasts: 22 - 4AB, 4AA, 4BB, 4AB, 3BB, 5AA, 5AB, 5BB, 5BB, 3BA, 5AB, 4AA, 3BB,4BB, 4AA, 5BB, 3BB
( Listed the first 17 embryos)
Hope my post helps someone going through a similar experience with high amh. For me the pain was quite bad compared to other women around me waiting for egg collection and I wish I had a better idea of what to expect doing ivf with a high amh or lots of follicles.
I tried my hardest not to ramble too much but any questions about pcos and ivf or going through ivf with the nhs I can answer if I can help anyone.