No periods PCOS and IVF: Hello does anyone... - PCOS UK (Verity)

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No periods PCOS and IVF

Eileen200800 profile image
11 Replies

Hello does anyone have no periods / natural ovulation from PCOS and/or a really high AMH above 100 and managed to get pregnant and have a baby through IVF? I could do with hearing some hopeful stories…

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Eileen200800 profile image
Eileen200800
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11 Replies
Amber90 profile image
Amber90

Hi I’ve just seen your post, I haven’t got a success story ( maybe one day) but I do have pcos and my amh level is 172. In the ivf clinic they said they have never seen anyone with such a high amh level but they wasn’t concerned they actually said given my score they knew they was actual able to stimulate me but they was so careful not to over stimulate me, I am currently under abc ivf, they are Great. Prices too. I had 18 eggs collected, only 10 was suitable and 9 fertilised, only 5 made it to day 6 blastocysts. I had 2 failed ivf transfers both frozen. And I am getting ready to have a 3rd try soon after I’ve had a little break only due to me not being able to handle the heartbreak after each failed cycle. But that doesn’t mean you will have the same outcome. Everyone is different. Can I just ask is your amh level over 100? I haven’t met anyone with a high amh level. Only spoke to people with a low amh. But from what I’ve learned I think we are in a better position with a higher amh level. So don’t worry too much which is easier said than done. But I do wish you every success and good look on your journey I know how time consuming it is, I have been ttc for 10 years 😒 and no where near ready to give up. Keep the fire in the belly and remember each time something fails you will get back up stronger and ready to fight again xx

Eileen200800 profile image
Eileen200800 in reply to Amber90

Hi Amber90 thank you for this it’s so helpful to hear. My AMH is also over 100… I think it’s 128 and my consultant said to me at one of my first appointments that he has only had 5 other people with an AMH over 100 and he could still remember their names. The question I never asked which I should have done was did they get to have babies ?!? So I think we are very rare.

That’s really good to hear about how many eggs you had collected. Did you have any hyperstimulation from the process?

I had an ovulation induction cycle earlier this year where they gave me low dose of IVF injections but we tried naturally. And the good news is I fell pregnant but the bad news is I had really bad hyperstimulation and miscarried at 6 weeks. So that was really heart breaking and I have been taking a break since.

So we are now weighing up our options of doing ovulation induction one more time or going straight to frozen IVF. I like the sound with IVF that they can control the hyperstimulation more and also assess the quality of the eggs more. But then obviously it costs more. I will have a look at abc IVF as I hadn’t heard of that.

I really appreciate your positive words of encouragement. I hope we both get there and have our success stories soon! I wish you so much good luck and it definitely does make me feel better to know that there are many of us women out there tackling this and we aren’t alone (even if I wish we didn’t have to tackle it at all!) and you are also an absolute hero for keeping going for 10 years and still being a great positive person :)!

Amber90 profile image
Amber90 in reply to Eileen200800

Hi again no I didn’t have any over stimulation which was great they was so careful to not let that happen only they wouldn’t allow me to have a fresh transfer incase I did and then it would of caused more damage, abc ivf is like reduce prices so people can afford treatment I pay £1350 each time for a frozen transfer and around £100 for medication. It’s £2500 I think for a full cycle medications scans bloods all included and they are so supportive each step of the way. Just have a little look at it.. aww that’s nice of you to say even though half of the time I don’t feel positive but I do have acupuncture which helps me massively and helps with pcos. Have you noticed since ivf has your periods got longer? Mine was around 35 days before ivf and after I’m every 6 months which is frustrating! So I’m having acupuncture and trying herbal medicine to see if I can bring back my cycle! Also I have had 2 miscarriages but that was natural! But I’mOn metformin I’m not overweight but metformin can cause spontaneous ovulation and help with miscarriages, can I ask how old you are xx

Eileen200800 profile image
Eileen200800 in reply to Amber90

Oh wow that is really good the abc IVF prices. That’s definitely a lot cheaper than what I had been seeing. I will definitely give that a look and hopefully we won’t have the hyperstimulation issues going forward as it was really painful and uncomfortable.

I also really like the sound of doing acupuncture so will have a look at that too. I had been thinking of starting to go for reflexology to try and help relax me etc.

That’s really annoying about your periods getting longer. To be honest I don’t have any periods at all- PCOS is so crazy. I did when I was on the pill but now I just don’t…. So we’ve been formally trying only for about a year… because before that I could tell I wasn’t ovulating but couldn’t get any doctors to listen to me then ended up going private (obviously Covid etc didn’t help). So I’m 30.. How old are you?

I’m the same as you though not overweight and also on Metformin. My only symptoms are the lack of periods and a get a bit of acne. I do keep thinking I need to completely cut out the sugar and hopefully if I take my Metformin the same time each day I would start to see results … But then I don’t really drink anymore so then to give up chocolate etc as well feels very harsh when we are already going through so much xx

Amber90 profile image
Amber90 in reply to Eileen200800

Oh wow you literally sound like me 😂🙈 acupuncture works amazing and I know for a fact it Does because I had anxiety massively and within 2/3 of acupuncture it went! And then I done acupuncture for ivf support and everything seemed well but my embryos just didn’t take obviously 😢 I’ve had reflexology though and it shocked me 😂 because I hadn’t a normal period for ages and within a few days I had the most naturalist period I’ve had for a long time! Anyway I went back after maybe a few years and just couldn’t get my period to come back! My body is so stubborn! It’s like everything I try fails! When it comes to conceiving anyway, but my heart tells me I’m meant to be a mum so how can I give up? I’m 31 now and feel like time is ticking! But surely after all this hard work we put into it hopefully we will get r baby at the end of it? And as silly As it sounds there’s lessons in this whole ttc journey I just have a hard time seeing them 😂🙈 but you name it I’ve tried it 😂 I hate being so desperate to be a mum cos it just hurts so much doesn’t it when it’s alls you want so you don’t have any choice but to keep going. But your defo not alone and many like us or in worse positions where they don’t get any embryos in ivf. We still have 3 embryos in storage, but I’m just not ready yet to go back and face it again but once I feel abit more hopeful that it may happen with ivf I’ll give it another go, but for now I’m taking metformin, acupuncture and starting the herbal medicine tomoro, you sound like me though with the whole diet thing lol I’m forever searching pcos diets and it always says stay away from chocolate 🙈 I am a chocoholic 🙈 but it’s okay to have 70% or above in small pieces so I’m now buying 85 % dark chocolate I mean it’s not the nicest but at least I’m still getting my choc fix and feel less guilt wen I have it 😂 I’ve read don’t do dairy or gluten but it’s so hard. So I’m just focusing on whole foods. More fruit and veg taking my vitamins and not much more I can do really I don’t wanna put too much pressure on things cos as you said we are already going through a hell of a lot! But one thing I do believe is that it will happen in diving timing and just try to trust the process! As best as anyway! But don’t give up if it’s something you truly want! It’s just finding what’s Guna work for us.. my symptoms of the pcos is obviously high amh my testosterone levels are high I suffer with the excess hair 🤮 and oily skin! I do IPL for the excess hair but it’s so hard too keep up with! Did you say you’ve already had ivf? And that’s how you miscarried? My friend has pcos and ivf got pregnant on her 2nd and 3rd transfer but miscarriages for both, and then on her 6th transfer she managed to stay pregnant and had a little girl! So I do think it all depends on how far your willing to go but if you have to pay privately like me shop around for the best ivf clinics. Abc ivf was the one for me because I could manage the cost of there prices compared to others but just don’t give up on your dream you will get there eventually and when you do you’ll be a hell of a lot stronger then before and it’s Guna make us even better mums because we’ve had the struggle! Xx

Amber90 profile image
Amber90 in reply to Eileen200800

Anxiety went with in 2/3 months of acupuncture I missed the months out of that message 😂🙈 xx

Bluelady-sing profile image
Bluelady-sing

How old are you?With AMH I though it was linked to periods, so a high AMH does that mean you have lots of eggs,?

How old are you

Eileen200800 profile image
Eileen200800 in reply to Bluelady-sing

It does but I think it can also make your hormones ‘off the wall’ so more chance of ovarian hyperstimulation etc. I’m 30.

Solly-44 profile image
Solly-44

Hi, I didn’t have zero periods but they were very infrequent and even when I did have one doctors confirmed I hadn’t ovulated. My AMH was 154.

I got pregnant on my 3rd transfer and now have a wonderful son from that round. We start again next month to try for a sibling for him.

It is definitely possible! Wishing you loads of luck, also you might want to try the fertility board on here, it’s very active and supportive x

Eileen200800 profile image
Eileen200800 in reply to Solly-44

That’s so brilliant and really great to hear. I hope you have success with getting a sibling for them 😊 good luck for the next bit of your journey and I will check out the fertility board thank you xx

Solly-44 profile image
Solly-44 in reply to Eileen200800

Thank you! My dr did say that IVF is very often successful for women with PCOS. That stick with me when times were tough! X

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