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Our Infertility Support forum is a space to connect with others in the same position, discuss causes, treatment and IVF, and share infertility stories of hope and success.

Original poster

Anyone have PCO but not PCOS?

35 replies

MF1981 · 19/08/2020 11:19

Hi everyone

I've been told I have polycystic ovaries but NOT PCOS. My AFC showed 28 follicles on the right and 20 on the left. Got my consultation tomorrow. The nurse was positive about the scan and said we should get eggs but mentioned risk of OHSS. Just wondered if anyone has any insight into PCO and that many follicles on AFC scan?! Plus what it means for treatment and success rates? TIA

OP posts:
JandL2020 · 19/08/2020 11:58

Yes I have PCO too. My AFC showed 15 + on one side and 16 on other I think. Nobody told me if that was good or bad so I assume it was all normal. I’m on a short protocol antagonist (less drugs) and risk of OHSS. I’m not sure about success rates sorry xx

JandL2020 · 19/08/2020 11:59

Also my AMH was 42 last November. Which was considered an indication of pocs x

Original poster
MF1981 · 19/08/2020 12:02

@JandL2020

Also my AMH was 42 last November. Which was considered an indication of pocs x
I get my AMH result tomorrow...
OP posts:
JandL2020 · 19/08/2020 14:09

Good luck. It’s always a worry. I read an book recently a couple went through IVF and she said she wish she didn’t obsess over AMH tells a general indication on egg reserve but not the quality. I thought well mines high I have a lot of eggs but they’re shit quality 🙁 xx

Original poster
MF1981 · 19/08/2020 14:15

@JandL2020

Good luck. It’s always a worry. I read an book recently a couple went through IVF and she said she wish she didn’t obsess over AMH tells a general indication on egg reserve but not the quality. I thought well mines high I have a lot of eggs but they’re shit quality 🙁 xx
Yes I've read that too! How do you know if they're good quality? I guess they only know when they try to fertilise and grow them?
OP posts:
JandL2020 · 19/08/2020 14:18

Yeah I start IVF next week so I guess I’ll find out soon enough xx

Original poster
MF1981 · 19/08/2020 14:32

@JandL2020

Yeah I start IVF next week so I guess I’ll find out soon enough xx
Good luck!
OP posts:
JandL2020 · 19/08/2020 14:40

Thanks 😊 xx

kikisparks · 22/08/2020 08:14

I was told I had PCO no S, my AMH is not that high (26). I too was stressed about what it means to have PCO but it doesn’t seem to have affected me from having a reasonable IVF cycle so far. I was on a low dose of meds and they had to coast me (stop the meds) for a day at the end as my estrogen blood level was too high and risk of OHSS. Got 12 eggs, which is reasonable but not near the high amounts often seen in those with PCOS, 10 eggs fertilised and got 4 blastocyst embryos- a top quality one which was put back and 3 frozen which are one decent quality and 2 lower quality but still worth a try. I’m in the TWW with the first one just now.

JandL2020 · 23/08/2020 20:48

@kikisparks

I was told I had PCO no S, my AMH is not that high (26). I too was stressed about what it means to have PCO but it doesn’t seem to have affected me from having a reasonable IVF cycle so far. I was on a low dose of meds and they had to coast me (stop the meds) for a day at the end as my estrogen blood level was too high and risk of OHSS. Got 12 eggs, which is reasonable but not near the high amounts often seen in those with PCOS, 10 eggs fertilised and got 4 blastocyst embryos- a top quality one which was put back and 3 frozen which are one decent quality and 2 lower quality but still worth a try. I’m in the TWW with the first one just now.
Good luck xx
kikisparks · 24/08/2020 06:32

@JandL2020 thank you, to you too!

Original poster
MF1981 · 24/08/2020 15:20

@kikisparks good luck! x

OP posts:
Original poster
MF1981 · 24/08/2020 15:21

My AMH was 65.7 so borderline for PCOS I think?

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mayihavesomecakeplease · 24/08/2020 16:55

I got told the same at my scan last month. The consultant didn't seem concerned and just said it meant I had plenty of eggs and they'd keep it in mind to avoid OHSS. I've not done a cycle yet though so I will find out in October if it's a problem!

Original poster
MF1981 · 24/08/2020 16:58

@mayihavesomecakeplease that's exactly what they said to me!

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zoeyj · 24/08/2020 19:24

Hey guys
I also have PCO (no S) and am happy to report that I had a successful round of IVF back in 2016 which resulted in my DD. I’m now in my 2ww trying for number two. I’m literally going crazy, time is going so slowly!

duckhouse · 24/08/2020 22:03

Hi @MF1981 i am PCO and have been undergoing fertility treatment for last 2 years (no success) but i think it is because of my inefficient clinic and nothing to do with my PCO. Despite of pco, they put me on long cycle and i had severe OHSS. Did get good number of blastocyst to freeze ans none have converted in successful pregnancy on FET. I really dont know if my pco is responsible or not for my ivf failures as my clinic has not told me so. Wishing you all the luck 😊

Original poster
MF1981 · 25/08/2020 09:56

@duckhouse thank you for sharing.

@zoeyj that's good news! Was it successful first try in 2016? I bet - the TWW is horrible isn't it? Such a rollercoaster. Fingers crossed for you x

@kikisparks good luck to you too x

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Original poster
MF1981 · 02/09/2020 11:15

@JandL2020 how is your IVF going?

OP posts:
JandL2020 · 02/09/2020 11:44

[quote MF1981]@JandL2020 how is your IVF going?[/quote]
Hey! Not too bad thank you. Had 2nd scan today and got quite a few follicles growing and lining looks good. Quite crampy and bloated on the injections. Have you had your treatment schedule yet? X

Original poster
MF1981 · 02/09/2020 12:21

Good news @JandL2020 - I'll keep my fingers crossed for you. Have they said how much risk there is for OHSS and how to avoid it? It looks like I'll be on short protocol but not starting until first week of November. We're away at the end of this month for a few days and the clinic want us to self isolate for 2 weeks before starting treatment so we've pushed it back a month. I'm currently 6DPO and feeling really flat today which is unlike me.

OP posts:
JandL2020 · 02/09/2020 12:37

@MF1981

Good news *@JandL2020* - I'll keep my fingers crossed for you. Have they said how much risk there is for OHSS and how to avoid it? It looks like I'll be on short protocol but not starting until first week of November. We're away at the end of this month for a few days and the clinic want us to self isolate for 2 weeks before starting treatment so we've pushed it back a month. I'm currently 6DPO and feeling really flat today which is unlike me.
They said I’m pretty high risk which is why they’re monitoring me every few days. Good news you have a start date and gives you more time to get in best shape possible and keep trying naturally (if this is an option for you) I basically went on a 4 week detox not sure if it’s made any difference 😂 have a great time away and enjoy a drink or 2 xx
Luz192 · 10/09/2020 17:38

Would be great if ladies in this group can keep posting updates as your treatment progresses - I'm in similar boat. From my investigation scan done a couple of months ago, I was told I had PCO but the hormone test came back normal so no PCOS. Curious to see how this may impact treatment/quality of eggs and risk of OHSS. Not yet had my first IVF fertility appt but will update on this too once my treatment starts.

JandL2020 · 10/09/2020 17:50

@Luz192

Would be great if ladies in this group can keep posting updates as your treatment progresses - I'm in similar boat. From my investigation scan done a couple of months ago, I was told I had PCO but the hormone test came back normal so no PCOS. Curious to see how this may impact treatment/quality of eggs and risk of OHSS. Not yet had my first IVF fertility appt but will update on this too once my treatment starts.
@Luz192 I had my egg collection yesterday. I had 2 blood tests and 4 scans and even though it looked very busy with follicles I didn’t produce a huge amount of mature eggs. I think this was because of the low dose but I’m happy to report likely to have a fresh transfer on Monday and haven’t developed OHSS. Drinking lots of water has definitely helped and a high protein diet before starting treatment and during (I started end of July diet and also no alcohol). Although I’ve been really bad since yesterday/today. X
Luz192 · 10/09/2020 18:11

Thank you for sharing the update @JandL2020 - I hope things progress well over the next few days and that the transfer on Monday goes well for you :) Thank you for the tips too re: water and high protein. I'll make more of a conscious effort about those from now!