IVF and PCOS

[Hollielouise]

Hi all, we've just been accepted for Kind IVF with LWC and wondered if anyone has had any experiences with the "kind/gentle" protocol and or London women's clinic and PCOS.
I'm really concerned with OHSS as I have "lean" PCOS and a high AMH/AFC but the clinic don't seem too worried...

Any experiences appreciated 🙏🏼 x

hey 👋 sorry I don’t have experience of gentle/kind ivf exactly just normal ivf. I’ve got v high AMH and high AF count and had OHSS for my last two cycles. I would say the clinics are super great at monitoring you and they will do freeze all of any concerns that not safe to do a transfer.

I have found the nurses and doctors very good at monitoring and checking in with you as well to make sure you are feeling ok.

although the high AMH gives you higher chance of OHSS I think sometimes people respond really differently to medication so the first time is always a bit of a trial to see what happens! Unsure of doses they use for gentle/kind IVF tbh but sounds like they use a lot lower doses so might be that this also reduces the likelihood of overstimulation!

Thank you so much for messaging and your reassurance! Did you end up doing a freeze all after OHSS? Can I ask what medications you used? They've suggested Bemfola Fyremadel Ovitrelle though I'm not sure of dosage yet.

My AMH is only 30 so not ludicrously high, I'm just anxious the gentle ivf options don't offer many scans but perhaps I can opt in for more.

Thank you x

Yes I had to do freeze all as I developed moderate OHSS. They will switch out the ovitrelle trigger to busrelin if you are at risk of OHSS. Usually they also measure your oestrogen pretty frequently to make sure your levels aren’t super high as this can make you more likely to over respond.

Funnily enough though my oestrogen levels were high but not super high but I still overstimulated.

I’ve been on both ovaleap and menopur for stimulation drugs (believe bemfola also same) and fyramdel.

usually they will scan you for as long as you need! I’ve never done that type of ivf I assume you just use very low levels of stimulation? Therefore your risk will probably be very low too for OHSS!

I did 150 bemfola . Amh 62.
I was supposed to have a freeze all but I actually didn't respond that greatly to the medication. While I had lots of follicles on right ovary , come ec day I only had 10 follicles and my left ovary didn't respond. I was able to do a fresh transfer tho. Despite the low number I still developed OHSS and it definitely wasn't fun. I think its difficult to know how you'll respond but your clinic should monitor you to keep an eye on things

Hello. No experiences as of yet but keen to connect at I also have PCOS - AFC of 45 and AMH which was 65 on last test but has been higher in the past. I’m also lean / low BMI.

Im starting IVF in a few days time and have been told I will be in just 75iu of stim medication (menopur I believe). Im planning to freeze all so my concern was the opposite to yours - I worried I would under stimulate as it felt like such a low dose!

Wondering what the kind protocol dose is? I will be having regular scans and told there may be some days at the end with no medication - so hopefully your clinic will be similarly careful! Best of luck x

So interesting to hear of different experiences. I haven't actually heard of anyone not having OHSS with PCOS but of course there are some!

The Kind protocol is a low dose medication I think but it is only 2 scans and a set protocol led by nurses. I'm sure they would liaise with a consultant if needed but it's more of an "off the shelf" style which worries me.

I'm finding out doses on Friday so I'll let you know. Perhaps they can build you up from 75 if there is no response? Have you tried any other OI methods before? Good luck! X

Hello,

Yes, I’m hopeful there will be wiggle room to amend the dose of stims - I’ve luckily (due to PCOS) qualified for two NHS funded rounds, although since I’m not a private patient, I’m not sure how much say I will have!

I have had a number of rounds of letrozole + sometimes the HCG trigger shot + 14 days of progesterone. Oddly in the 6 rounds I had a trigger I didn’t conceive, but 2 or the 3 rounds without a trigger shot I did conceive - sadly ending In a chemical and a blighted ovum.

Have you been trying OI too?

Im partly looking forward to the next stop with IVF but fully aware there are so many unknowns. Best of luck for your meeting on Friday. Keen to hear how you get on x

Hi there 👋

Said I'd touch base here for the first time! I also have pco and relatively high amh of 38 I'm 31 years old.

We had two failed iui's and are now in the middle of our first IVF cycle, egg collection tomorrow ✨🙏💕

I was started on 75 gonal f for iui's which produced one mature follicle each try, but with AFC both ovaries every scan 35

This IVF cycle iv been stated on gonal f 175 daily and cetrotide.25 daily from day 2 of injections. Prior to starting the cycle I had been put on ovrinette pill for one month and have also been on Metformin 3 times per day for the last year.

On baseline scan we had approx 30 follicles, on our day 6 scan on meds we had 45 follicles. Most recent scan was last Friday and they decided to trigger with bruselin on Sunday night to be ready for egg collection tomorrow. 🤞Freeze all cycle due to number of follicles. They're optimistic for approx 18/20 to be mature but will take all follicles 🤞 It's all new to me we're just taking their advice and doing what we're told!

Throughout the stims we had no bloods taken, one baseline scan then once scan day 6 and one scan 2 days later to see rate of growth and then was booked for egg collection! It's moved so quickly and gone relatively smoothly, hopefully tomorrow goes equally as smooth 🙏🤞

Best of luck hope it goes smoothly for you!

Hi @Babydusttous2024

Thank you for sharing your story. That sounds like a fantastic number of follicles and lots of potential embabies :)

Will you do PGT-A testing while they are frozen or not? This is something my clinic is offering and i'm tempted to go for (I'm 34).

I'm having a call with the nurse today and will hopefully start injections on Thursday / Friday. It feels like going into the unknown as I've heard the first cycle is a bit of trial and error.

Keep us updated! And good luck for that anxious five day wait while the embyos develop x

Hi @Carlotta27

It was never mentioned to us about that specific testing to be honest so I can't really help you out with that one, seems like it might be a good option though, would provide more peace of mind once your pregnant 🤞 one less thing to worry about!

So I had a really lovely experience today, don't recall a thing of the collection was well sedated, got 18 'supereggs' as per the consultant so we couldn't hope for any more ✨ will get phonecalls during the week to see how everything progresses, have to say it's such a relief to get this far! Being our first cycle, I have to say it went really smoothly from an injection, scan, growth and collection point of view so I really hope you're the same 🤞🤞 I deffo have hyper stimulation as they collected 47 follicles In the end but I feel fine at the moment , drinking plenty of water and they provided difene for the next five days to help with pain. Feel really well looked after I really hope you have a similar experience 🙏✨🤞
I also had SO MUCH pressure in my lower abdomen on the way to the clinic today it was very uncomfortable! Just incase you have loads of follicles that's to be expected! Xx

@Babydusttous2024

That’s great to hear that you had so many super eggs 🍳 and the first cycle went so well for you! May I ask which clinic you are at?

Glad it doesn’t sound like your too poorly, but good to know about the pressure in the abdomen, must be awkward if you look a bit pregnant from all the swelling.

Best of luck for the next few days. I’m really hopeful that with so many good eggs there will be multiple embryos :) Now I guess you have the challenge of keeping yourself distracted whilst eagerly waiting for update phone calls! 🤞

@Carlotta27 thank you so much! I'm with a private clinic in Ireland they're Waterstones.

Yes feeling so hopeful now it's scary to be so vulnerable and have zero control! The consultant was saying 3-5 embryos would be a very good outcome so at least she's set the expectations 🤞✨ Iv been getting reflexology which is really helping me keep balanced throughout the whole thing 🙏

Yeah I was warned about the bloating/not being able to fit into jeans etc but to be honest it wasn't that bad until the last two days! Comfy clothes for a few days is on the cards 😆

Awh thank you so much that means a lot🥰 I really hope you have a good result from your stimulation phase now keep us posted if you're comfortable doing so🤞🤞✨✨✨💕💕💕

Hi all,
@Babydusttous2024 just had 4th cycle and have confirmed mild ohss, belly swells up 2 inches by evening, im 2kg heavier and my boobs are like rocks 😂 sympathies! Just keep an eye on what youre drinking versus what comes out...they gave me a jug to check. I felt good day of collection then rubbish again but if your body isn't clearing the fluid it can build up and cause issues so I you get bad nausea, vomit, urine dark and small amounts, seek advice x
@Hollielouise
we had lower dose drugs this time (had prostap as buserelin out of stock everywhere) with gonalf and meriofert, gonasi trigger and totally different protocol( long), previously meonpur, fyremadel and ovitrelle which didn't really agree with me .
When I asked them about why i got ohss this time whereas previous 3 it waa just usual ivf symtpoms they said although there are certain risk factors such as pcos there isn't always a reason why it either happens or doesn't Even in the same person. They can do everything to prevent it with managing meds,monitoring etc but it just randomly happens as your body responds. Every one of my cycles has been a little different with how I felt but this is the first one we got 25 decent quality eggs rather than 8-12 iffy ones. Of those 21 were mature and 13 fertilised...this has never happened before.
@Carlotta27 We had planned pgta and freeze all with an option to transfer an embryo not freezable but with ohss we can't do it. We were on the fence with pgta but with my age of 37 in a few days, multiple fragmented poor quality embryos over last 3 cycles we thought we'd go for it. It doesn't improve pregnancy rates but reduces rate of miscarriages/losses which appealed to me x

Hi @kerrym87 good to hear your story! Wow 4 collections is a lot - have you had any live births along the way? I expected PCOS would give a few embryos per cycle but I guess you never know the quality until you try.
Indecided to got for PGT-A in the end too. I really want to avoid the pain of a miscarriage and my dr told me a tested euploid embryo had something like a 55% chance of birth which felt really positive to me …. Now the challenge is getting some decent embryos and seeing if any pass the testing for me!

sounds really positive the Drs have tweaked your protocol to get better results, definitely moving in the right direction x

@Carlotta27 no not even a bfp. Out of 23 fertilised embryos only 2 made it to transfer as they were fragmented or stopped dividing. Quality has always been poor I am an atypical pcos, like everything else I have! 😂

@kerrym87 I'm really sorry to hear that, and sorry if it was an insensetive question. It's so tough when the odds should be in your favour and then they're not and there isn't an obvious solution! You're really strong to keep pushing on, i do have to keep reminding myself too that it only takes one good embryo... x

@Carlotta27 it's OK, its easier coming from people on this journey as we all struggle with the same thing. That's my mantra it only takes one! However we've paid for 2 rounds then I'm done. It'll be donor or other options

@kerrym87 yes, I understand you - I find it a lot easier to talk with women who have struggled and had losses like me, whereas those who seem to get pregnant easily still evoke some quite negative emotions on me, which makes me feel like a mean and bitter person.

it’s good that you have a plan b, as I find that helps when the original plan doesn’t go as you hoped. You’re collection this time round sounded positive, so a bit of reason to be cautiously optimistic x

Hi @Hollielouise ! I am also starting my treatment with Kind and today's gonna be my first injection day, feeling a bit nervous and glad to find someone who's around a similar time so I just jumped into the thread.

Can't help with the original question but the nurse who did our consultation said that through KIND protocol they can only prescribe 112.5iu or 150iu Bemfola. I am going to start with a lower dose at 112.5iu as my AFC was 30 so they want to be cautious not to overstimulate though I was told I don't have PCOS (age 32 and AMH 20.8). We'll see how my body responds to the medication as it is our first round!

Saw you are going to the consultation today - good luck with everything and hope it all goes well!

Annoying news for me today! I was about to start my first cycle but have come down with a flu (with chills and bit of a fever). The nurse i spoke to said i could go ahead if i felt okay, but then the senior Dr said no and best to postpone a cycle... I suppose it may be for the best, but it's frustrating all the same given plans are now delayed even further! Good luck to you ladies x

It is frustrating but from experience and other peoples stories any illness even if brief during stims can be spectacular. I had mild intermittent viral symptoms which then became covid after egg collection but it torched my eggs and we didn't even have normal fertilisation of the 8 eggs. I still regret continuing with that cycle and it was 1.5 years ago.
Its still a bummer though especially with the run up and preparation, emotional toll, its ok to feel so angry and upset even though you know it may also be the right thing to do x

Hi, reading your stories with interest and would love to hear how you get on.

I’m due to start ivf in March, and have been warned about ohss due to my AMH (22.5, not actually that high), potential lean PCOS, so expecting to need a frozen transfer.

In the meantime we’re doing one or two final 2.5mg letrozole cycles, and had the trigger shot (ovitrelle) yesterday for the first time. My left ovary is quite uncomfortable and sore particularly when I move (had 2 big follicles on that side on scan yesterday) so I’m a bit worried I’m overstimulating. Hoping it calms down tomorrow as we need to DTD…

@kerrym87 thanks for sharing your story. How frustrating for you that a cycle was pretty much wasted! It does give me reassurance though that postponing a month was the right choice.

@Sierra26 hello! Good luck for the final letrozole cycle. I did a regime with 5mg and usually had just one follicle. Weirdly in the two cycle I didn’t have a trigger shot, I managed to conceive (but sadly ended in early loss), then on five cycles with the trigger shot I didn’t concieve. I have a weird theory the trigger shot didn’t agree with me, but obviously it’s just a theory as Drs wouldn’t give it if it didn’t help! Two follicles gives you an extra chance - let us know how you get on! I’ll be starting ivf at the beginning of March too x

Hi @Carlotta27 i recognise your username from a while back (luteal phase thread maybe!), sorry we’re both still here and to hear about your losses :(

Interesting about your trigger shot theory, I wonder if it was messing with a process that didn’t need messing with! I’ve been wondering what happens if your natural lh surge causes ovulation before the shot has the chance to take effect, does the excess hormone cause havoc.

This is our fifth letrozole round with no hint of a bfp, but all have been without trigger. Ive also got progesterone to take for the first time this month - doc suggested trying just trigger first then adding the prog next month if needed, but I’m just going to throw both at this cycle as we’ve been waiting long enough 😂

My symptoms have calmed down from yesterday but at least now I know it’s likely I’ll overstimulate to the ivf meds so should probably plan for a frozen cycle.

@Hollielouise I’ll be watching for your update with interest! (Sorry to hijack with letrozole chat 🤣 but I fully expect to be in your shoes in 6wks time at first ivf appt…)

While im here - has anyone done a mock embryo transfer? I had a hella painful HyCoSy as they couldn’t get through my cervix so have been recommended this (I assume to… experiment/prepare?).

@Sierra26 oh yes, I think I remember your username too - such a shame we’re still here as it looks like many others have had success. I’ve always been given two weeks of progesterone support as my luteal phase is just five days. Oddly the first dr I saw told me I had a low AMH and it was caused by my short 19 day cycles using up eggs so fast. The second dr I saw found a very high AMH (115 on one test and 65 on the next) so said it was likely PCOS given high AFC. So it’s been a real rollercoaster - first getting me head around having a diminished reserve and then having almost the opposite problem with PCOS!

great that the dr is mixing things up a bit this month, like with my odd trigger shot theory, I expect there is an optimal set of medication which will vary from person to person with trial and error. Are you feeling positive about starting ivf? I was feeling optimistic as I’d hoped PCOS would result in multiple embryos, but the more I learn, the more I realise the first found of ivf can be a bit of a trial, so I’m trying not to get my hopes up too much for March. It’s just getting frustrating being patient as my peers seem to get pregnant very quickly, yet it’s taking months and months just to have a good shot for me! X