IVF - May

[TheSnufflet]

Couldn't see a thread for May so I thought I'd start one!

Anyone else doing their cycle in May? I just got my calendar through and all the injections look extremely Not Fun (this is my first time doing it) 😕

@2mumlife I’m not sure about their stance that there is mixed evidence for the scratch. I wonder what their evidence base was for the protocol they put you on and for such a short duration of stims.

My clinic tends to give similar treatment to everyone, I’m a doctor so I read a lot of the evidence, I’ve just finished reading a book: How to Prepare the Endometrium to Maximize Implantation Rates and IVF Success. Which is aimed at those with a background in anatomy and reproductive physiology. It’s helped me feel more empowered and given me lots of information on how to move forward. I’m lucky that I have a specialist that works with me, but I’ve been saying all along that I know there’s something wrong and she was advising that it will be fine and I had to be positive. It wasn’t until we got the PGT-A results that we ended up on the same page and started going down the implantation failure route.

I guess for me it’s a balance, I’m not sure that clinics always get it right and sometimes we have to act as our own advocate. Part of the reason for issues arising is that the HFEA and UK clinics have an emphasis on a trial and error approach rather than reducing the time to success.

Hi everyone, can I join?!

We should be having a FET week commencing 31 May. I’m 34 and we have been TTC for just over 2 years. Blood and semen all normal, regular periods, no previous miscarriages, normal scans - just no results!

We only have one cycle funded by the NHS under 35 so we were ‘lucky’ to get this cycle as I will be 35 soon.

I’ll be starting long protocol in about 2 weeks time. I’ve just had my schedule through- about one month of nasal sniffs then approx 2 weeks of stims.

We are nervous, but strangely looking forward to the scientific side of it all. I’m not looking forward to all the various symptoms and side effects though...!

P.S. wishing everyone lots and lots of luck! It’s really nice to have others to talk to who will be experiencing the same thing!

@RazzleDazz1e welcome! 😊 Yea it will be great to have people to chat to throughout this process who are in the same boat. Have you been through this before?
This is my first time so it's nice to know there are other people feeling the same.
We are nervous/excited too. I should receive all the meds at some point this week I think it will all start to feel real then! 😊
Wishing you the best of luck!

Hello ladies,

Please can I join you? We started down reg on Buserelin yesterday, and are on that for 14 days or until I bleed. Then baseline scan and start stims.

I’m 30 but have low AMH for my age; my AFC was 7 when they scanned me this cycle. Plus there’s some MFI, so we’re having ICSI. Writing all this down, it does feel a bit like the odds are somewhat stacked against us!

Looking forward to sharing this journey with you all xx

@TeaAndCrumpets1 welcome! Sounds like we maybe about 1 week apart and roughly in the same boat.
I start my down regs (Norethisterone) this Sunday for 2 weeks.
We are also having ICSI due to MFI and my AMH levels were 9.5 which she said was on the lower range or normal for my age (33) so not sure if that is something to worry about or not...
Hope it all goes smoothly for you sending you lots of luck!! X

@Gardenlady543 Its great you've found a consultant you feel you can work well with :)

@RazzleDazz1e Please do feel lucky for any NHS treatment :) fingers crossed this does the trick for you.

@TeaAndCrumpets1 As people keep telling me, it only take ones. Good luck!

Exciting times everyone getting drug deliveries!

Hi everyone, hope you had a relaxing Easter weekend!

@2mumlife - it's so unfair that you have to pay so much as a same sex couple, I feel very lucky that we've got the opportunity to have this with NHS funding. It sounds as though you've got a few variables in your favour (age, weight, normal AMH) though, hopefully the flare protocol and progesterone testing might do the trick this time!

@Gardenlady543 you poor thing, you've been through the wringer. I had no idea bacterial flora could have such a big impact (although I suppose it makes sense). It must be so frustrating getting so many embryos but having implantation issues when is the wait over for you and when can you begin a new cycle armed with the new knowledge?

Hi @JesHope345, exciting isn't it? I'm interested that you've been trying for about a year and a half - what is the time criteria in your CCG? Mine was 3 years minimum, it's so weird how different it is in different areas..

Hi @Georgie87B, a fellow ICSI-er! Did you have an AFC done as well as getting your AMH scores? I gather that even if one is low, the other can balance it out IYSWIM, so it's not necessarily a bad thing?

@VenusStarr I really hope you get some answers and hopefully some success via IVF - one of my friends has had RPL and has found the NHS are pretty useless/heartless with the advice - it's so hard to 'just keep going'. Have they told you when your cycle might be likely to begin?

Hi @FingersXssd83 it's great to hear from someone that's had previous success fingers crossed for you that it works again!

Hi @RazzleDazz1e, did you have a fresh cycle before or do you get the one FET? Interesting that you're on the nasal spray version of buserelin, did they say why they're giving you this vs injections?

Hello and welcome @TeaAndCrumpets1 - it does all feel massively daunting but it is so nice to have support on here. It's a cliche but it does only take one good egg...

I'm interested to know what everyone's protocol is? I'm currently on Microgynon (which I LOATHE) which I started on the 27th March and only get to finish on the 1st May - this seems like a really long time to be on birth control compared to other people? I think it's for batching reasons as our clinic only does ERs one week out of the month.. It's giving me the most awful mood swings - frankly, infertility involves enough tears already, I really don't need any more

Then I'm supposed to start buserelin from 25th April up until trigger day (there is an overlap when I'm taking Gonal F at the same time). It seems like ages away but I'm almost looking forward to the injections as it means I won't have to take this wretched pill any more - I'm sure I'll regret saying that later! ER has been provisionally booked in for the 19th May but I'm sure it can change based on how I respond to the drugs.

Another question for you all - how many monitoring appointments are you having throughout your cycle? I only have the one and I'm not sure whether that's to do with COVID or not? Mind you, a lot of the information you read on the internet is from America and they seem to do all sorts of things that we don't.

And yet another question - do your clinic give you a likely change of success per cycle/transfer? We've been told to expect a 25% chance of it working, so I'm trying to go into it with the expectation that it's going to fail, which is a bit of a headfuck, given my AFC and AMH are pretty decent for my age and I've conceived naturally in the past. The whole thing feels more like witchcraft/guesswork than science a lot of the time

Hi @TheSnufflet my mistake, I meant one fresh embryo transfer!

They actually gave me the choice of nasal spray or injections for down regulation...its nafarelin (synarel).

They said our success rate could be around 40%.... so let’s see!

@TheSnufflet Yea my AFC was 7 left ovary and 9 on the right, not sure if that's a good or bad number but she didn't seem that worried about it. I know what you mean though hopefully it balances out 😁
Oh I'm sorry to hear your having a tough time on the microgynon 😞 hopefully your body will get used to them soon and the mood swings will start to ease 🤞.
I'm not exactly sure on all the different protocols but think I am on the short one. Mine is:
Start norethisterone on Sunday 11th April
Stop meds for period on 25th April for 5 days
Start gonal-f injections on 1st May and introduct a 2nd injection (Cetrotide) ontop of the gonal-f from 6th May and all being well hope to trigger on 11th with ER on 13th.
Thoughout this I only have 2 monitoring appointments booked in at the moment one the 6th of May and the other the day before I an due to trigger. I think COVID has made this process very strange. I have only physically been to my clinic once when I had my fertility tests done other than that it has all be through phone, email and paperwork via an online portal.
Also in our consultation we asked our chances of success and I think she used something like the following to calculate this: w3.abdn.ac.uk/clsm/opis/home/toolintro
not sure how accurate it is or if any help?

Thank you @TheSnufflet we've had the same from the nhs, just keep going and hopefully you'll get there. My last loss nearly broke me, especially finding out that the baby was chromosomally normal, but we've had no follow up from the hospital since, just left to it.
We have our consultation tomorrow morning and I think we could start on my next cycle - although af is due literally any day now, so I think it will be early May. I was recently diagnosed with adenomyosis which I heard longer down reg can help, but I don't know whether my clinic will do that - I'm with Create for my nhs round. I'll let you know tomorrow! :)

Thanks for sharing the link @Georgie87B I got 34% which is quite good.

X

Hi all, how is everyone doing? Mind if I join?

Finally got all my blood work through so ready to start now! I'll be on short protocol so start taking ovaleap on cycle day 2 which should be around 22nd April.

I've previously had a ruptured ectopic pregnancy so only have one tube. My ovary on my tube side is very small with much less follicles than my right and I have endometriosis. Amh is good though and I'm 32, DH also has good sperm so I'm feeling optimistic that IVF will work for us eventually!

@thesnufflet I think our clinic are expecting to do at least 2 monitoring scans through the cycle.

@TheSnufflet I find some of the simple hormone pills the worse! I am on a mock cycle at the moment and on HRT, it makes me feel awful. Whereas the stims were absolutely fine! The clinic should arrange an initial scan, they should then advise about further scans based on the results of the first. I think usually clinics tend to scan on day 8 of stims, I have a high AMH (34) so they brought this forward to day 6.

As for the chance of success, it looks like they have given you the national average, a individual’s chance can vary depending on your age, health issues, AMH etc. Clinics also provide their success rates per cycle my clinic have around a 1 in 3 rate of success per cycle. So going by these figures most people should plan for it to take 3-4 cycles for success, of course you may be lucky and it could happen the first time.

As you go through your cycle you’ll have some more details that can indicate your likelihood of success - how many embryos you get and the grading for instance. My embryos were in an embryoscope and each was given a percentage change of a live birth- my best one was 46%, that would then go up to as high as 70% if it’s PGT-A tested as euploid. But statistics alone don’t tell the whole story. In my case I produce good rates of high quality euploid embryos but they don’t implant. Even with the perfect embryo and what appears to be the perfect conditions there is still a 30% chance of it not working. This could be because of genetic issues in the embryo that can’t be detected on the tests undertaken or it could be because of the endometrial conditions, I see this as many things needing to line up perfectly, and sometime a few attempts need to occur before this happens.

I hope that didn’t come across as too pessimistic, I guess in my case I went into IVF thinking it would work the first time and then had to deal with the emotional impact of it not working. I’m sure most of us on here will be quite guarded, if we were the worlds most fertile people we wouldn’t be having IVF in the first place.

I’m currently on day 14 of my mock cycle, my endometrial lining needs to get up to 9mm before I can start on progesterone and have my endometrial biopsy, it was 7.9mm yesterday. It’s getting there although I don’t expect it to be at 9mm on my next scan on Friday based on the current rate. I’m hoping I’ll be ready to start the next FET with all my new information in mid-May

@RazzleDazz1e I'm almost jealous that you get the nasal spray instead of the injections 40% is a bloody good number! Are you doing standard IVF or ICSI?

@Georgie87B I think with AFC it totally depends on what point of the cycle you're doing it in and the skill of the sonographer - I had a count of 12 on my right ovary and three on my left, but that's because I had my scan close to ovulation and all the other follicles were hidden behind a massive one that was about to release an egg and two other large-ish 'reserves' - either way, if they don't seem worried about it then it's got to be good eh?
It's crazy to know just how many variations of cycles and drug regimes that they can put us on! I'm the same in terms of not having been to my clinic very often before all this - just twice to have my AFC and AMH done, as well as my virology bloods along with my husband (having to repeat them, unfortunately).
That tool is very interesting, as it gave me 43% - I'm now wondering if the 25% thing is because of what my clinic classify as a 'cycle', as it includes a fresh transfer and a frozen transfer in the one cycle. So maybe cumulatively they're giving me a 50% chance? I'll take it!

@VenusStarr I'm so sorry I understand statistically why they only want to investigate after three losses but my god, the impact that it has is devastating especially with no chromosomal abnormalities how did they diagnose you with adeno? did you have a lap or is there another test?

Hi @DoctorBambino and welcome! sounds like you've also been through the wars, but you've got some good stats on your side I'm feeling quite miffed that I only get one monitoring session now! Have you had your dates through for potential egg retrieval/transfer yet?

@Gardenlady543 ahh at least it's not just me that finds hormones rough! What specific drug are you on for HRT? As you have a high AMH, are you at a higher risk for OHSS or do they mitigate it in some way?
My clinic produced this infographic (based on relatively old data) which is quite interesting in terms of visualising success rates: www.instagram.com/p/BXDnwC3gtOe/
It seems reasonably reassuring, but then I'm only covered for the two blue segments and would probably have to remortgage to get to the yellow bit. And of course, there is every chance that I'll end up as one of the grey circles; after all, 90% of couples conceive within a year of trying and 95% by two years so I'm already within a supremely unlucky 5%.
I don't think there can be such a thing as 'too pessimistic' in this process - in my case I'm trying to go into it with every expectation of failure, because as you say, so many things need to line up perfectly for it to work. I think it's called 'defensive pessimism' - if there is a positive outcome, it will be a pleasant surprise Good luck for your biopsy (hopefully with some good recommendations for the next round) and fingers crossed you can kick off another FET in May !

@TheSnufflet Its such a mixed back to be honest re: funding. I think it must be really hard being a couple thats been trying for a really long time - I heard you say 3 years for your area which sounds even longer than in our area (2 years) and I can't imagine what a toll that takes, plus the longer waiting times to get treatment. In many ways I feel really lucky in that respect. On the other hand I find its not really equitable requiring same sex couples to make a big financial investment because they cant try the usual way. I think there maybe needs to be changes all round i.e. reduce the number of cycles same-sex couples need to pay for before being eligible for NHS treatment (even just to say 4 IUI attempts for instance which is financially less severe, and after which the odds of an IUI pregnancy working really level out and why we moved to IVF after 4 attempts) but also reduce how long couples like yourself have to try. I used to feel very lucky that we were just in the fertility clinic because we needed sperm, but increasingly starting to feel that its not as easy as just that! Sounds a bit rough your clinic batching you all for ER! When I did my fresh cycle I wasn't on any birth control prior - I had a Prostap downregulation on day 21 of cycle (1 big needle given at the clinic), waited for bleed then started menapur stim injections, progress scan and bloods only once (normally it would be done twice, possibly 3 times but as my nurse said I was 'on the fast train') and ovitrelle trigger. My clinic are doing same number of scans/bloods (SO MANY BLOODS!) as usual, they just aren't letting partners attend (the only time my partner is allowed in the clinic has been for IUI inseminsation, egg collection and embryo transfer). My clinic are also doing all consent appointments, cycle reviews etc via telephone or teams. My clinic regularly gives estimates of success rates. They've estimated my success of this next FET to be 40% (if I remember correctly they estimated for the full cycle (ie fresh transfer and all FET) to be around 60%). The staff at my clinic though have had some training to CONSTANTLY be positive about every single try and it working in the end (it gets on my nerves a bit to be honest when I'm trying to keep my expectations in check!)

@RazzleDazz1e How are you finding the nasal sprays?

I have a (virtual) appointment with embryologist tomorrow (why we need to meet I'm not entirely sure since we only have 1 embryo so there isn't a discussion to be had around how many to defrost, so I'm sure it will just be about risks embryo doesn't defrost, though clinic estimates a 95% change of successful defrost with our embryo) but that should be the last thing on the check list before we get drugs ordered. I'll be on HRT starting between day 1-3 of May cycle (depending on which day of the week AF appears). Though I'm still waiting for AF for this month to appear so I can start the countdown (we could have gone for FET this month technically, but decided for various reason not to try in this April cycle).

Anyone have anything they're doing to pass the time waiting? I've started my veg growing for the year (despite it hailing yesterday!) and I started a course in British Sign Language in January which finished the other week, but I've signed up to do the next level of the course which starts next week to give me something else to think about.

@TheSnufflet I’m taking estradiol 10mg a day (2mg orally three times a day and 2mg vaginally twice a day). I’m also on a 100mcg estradiol patch. I’ll start on Lubion progesterone injections once a day and cyclogest pessaries twice a day when they say to start, after 5 full days I’ll have the biopsy.

The estradiol makes me vomit and I’ve been diagnosed with progesterone hypersensitivity. Lol I am a walking IVF nightmare! You know I wonder how it’s possible that I’m never in the big percentage that should be pregnant by now, but yet I seem to get diagnosed with rare conditions, there are only 200 cases in the medical literature of progesterone hypersensitivity!!! I previously thought I was super healthy before starting this fertility journey!

Anyway I’m not a fan of statistics anymore, I tried the Edinburgh calculator and it said I had a 84% chance of being pregnant already based on my 2 cycles, and I haven’t been. I’m really hoping this ERA is the thing that explains what’s going on. 1 in 3 women with unsuccessful IVF transfers have a shift in the transfer window so the progesterone timing needs to be adjusted.

Re the high AMH, I was put on low dose stims and scanned early for this reason, they were also very careful about measuring my oestrogen to check it wasn’t too high. Everything went well, after 8 days of stims I had the EC: we got 12 eggs, all were mature, all fertilized, we got 9 blasts and no OHSS luckily! I know I’m lucky to be able to get the embryos but I guess in the long run there is no difference between me and someone who has trouble getting embryos, if they never implant.

@2mumlife loving the idea of veg growing and a course to keep you occupied! I've been doing lots of paintings and am recording every big IVF event (mostly blood test related so far haha!) in an art journal which I'm finding very therapeutic 😊

@TheSnufflet no idea on specific dates yet, I keep trying to work out when it will be! Does anyone on short protocol have an idea of how many days of stims there are? Is it even different for short vs long!? Clueless 🙃

@2mumlife the BSL course sounds like a great thing to do to take your mind off things. I grow veg too and that’s also a great thing to do, although I can’t help but think about pregnancy when I’m doing it, eg oh I might be pregnant when there’s tomatoEs on this plant! I’ve also raised a triop (sea monkey) over the last couple of weeks. I was surprised to see there are huge amounts of people obsessed with this! There is only one because he ate everything else in the tank, survival of the fittest, lots of similarities with the fertility journey!

I suspect you’re right and the embryologist is going to mention the risk of the embryo not surviving the thaw, it’s unlikely that this will happen but I guess they need to give a heads up that it’s a possibility, as it would be a huge shock on the day if they hadn’t discussed it already.

@DoctorBambino I was on a short protocol, I was given 12 days of stims but told to stop after 8.

@2mumlife to be honest it's all hard and shit whoever you are. I think there's got to be a balance struck; at the moment same sex couples are massively disadvantaged by having to shell out so much before getting access to IVF (I thought IUI was largely pointless after 3 cycles? but I know of people that have had over 6 before moving to IVF) but then there is no consistency as to the access that het couples have across the country - it's a complete postcode lottery and it's heartbreaking to think that if I lived in say Cambridge then I would have no access to NHS IVF. In the grand scheme of things, IVF does not cost the NHS a huge amount - I wonder if anyone's done the sums on how much extra it would cost to fund all areas according to NICE guidelines? Mind you, people (usually fertile people) get really weird about NHS IVF funding in general, as if everyone undergoing it is somehow doing some frivolous 'lifestyle choice' rather than addressing underlying health issues
Again, amazed by the differences in drugs and protocols! I know mine is called 'IVF/ICSI Long', but damn did they mean long! My clinic is also super mega positive about success rates as well - the nurse who did my bloods last time told me her own daughter had success with her first fresh cycle at the clinic and I was all... that's great, really trying not to get my hopes up here
I've also got a bunch of veg/flowers/roses going (thank god for the greenhouse!) - it makes me feel like I can make something grow, even if it's not babies

@Gardenlady543 I didn't even know progesterone hypersensitivity was a thing?! How does it manifest? I've heard RE progesterone timing that it can be the difference of as little as 12 hours or so - would this mean you have to take it pre-transfer or later? Glad to hear your clinic are conservative about OHSS - I had to watch loads of videos about it in the online consent portal and it scared the bejesus out of me

@DoctorBambino I'm on a long protocol, but by the sounds of it every single cycle is individualised so who knows! 🤷

Lol @TheSnufflet I hadn’t heard of it either and I’m a doctor! It ranges from systemic skin reactions, which basically means skin reactions away from the site of the medication (not the injection site) associated with when the drug is taken. And at the worse end it’s anaphylaxis. People can have these reactions either to prescribed progesterone or even the progesterone their own body produces. It’s underdiagnosed and when I explained the condition to my colleague he said this condition could account for young women randomly going into anaphylaxis with no cause identified. It started in my fresh cycle, I was on cloud 9 with how well everything was going and then I got a rash on my arms, my specialist said we had to cancel everything but I begged her not to and we ended up transferring the worst embryo, which didn’t work. I was given an epipen and saw a immunologist. Luckily it’s just a rash for me. But it’s so rare my specialist has never seen the condition before.

@TheSnufflet ahh we have our virology bloods being don't next week so will be our second appointment then so hopefully will get a chance to ask some face to face questions then about everything but yes like you said it only takes 1 good egg!

Just been trying to catch up on all the posts and I know it's such a crazy lottery with NHS and funding unfortunately we do sit in the Cambridge bracket so NHS is not an option so we have had no choice but to go private but if my doctors was 5 mins down the road in another county it would be a completely different story! It just doesn't make sense!

Also welcome @DoctorBambino! 😁

Got all my medication arriving tomorrow I think once they arrive everything will start feeling real! 😬💉

@DoctorBambino The art journal sounds interesting. I did nothing for IUI, but I started a written journal before starting IVF.

@Gardenlady543 OMG I had sea monkeys when I was little! I didn't know they were still a thing. I'm more on the thought process of @TheSnufflet when I'm growing stuff e.g at least I can make something grow!

@TheSnufflet I agree it shouldn't be so much of a postcode lottery what you get. Yeah cumulative rates with IUI level off around 3-4 but IUI is about 1/4 of the price of IVF so we did the 4th round, by which point I'd kind of felt it wasn't going to work. When we had consultation about moving to IVF though consultant had said we could stick with doing the 6 rounds of IUI if we wanted as still a chance because we've got no infertility indications, but it had just started to feel like we needed to try something else.

@Georgie87B Wow I didn't realise there were places that just don't give any NHS funding at all, that's really rough.

Hi everyone 👋 I typed out an update and lost it!! 😔

Anyway, had our first consultation today and it went well. The doctor us happy to include immune support as suggested by my recurrent mc specialist. They'll prescribe prednisolone and clexane and he's happy for me to also have intralipids and hydroxychloroquine (my current plan) but he can't prescribe it.
He was concerned about my amh so did try to prepare us for low numbers, possibly 2-3 embryos and we might even need to do a day 3 transfer. I had about 8 follicles today. We did discuss Pgs testing but with the predicted small numbers and possibility of not even making it to day 5, we're not doing that this cycle. If we gave another loss or no success, I think we will look at perhaps embryo banking and possibly doing that then.
Stims start on day 2 with low dose prednisolone and then scans day 6,8,10 and then egg collection. We'll do ivf, but he said of on the day my husband's sperm sample is not great (he hadn't been tested since 2018) then they'd do icsi.

Something strange though - I did a letrozole cycle with my recurrent mc specialist and he gave me a trigger shot (ovitrelle) as I had 3 good sized follicles. So, I'm cd26 today, took the trigger on cd14 and definitely felt ovulation cramps on cd15/16. But today, I have a 16mm follicle on one ovary and a corpus luteum on the other, so he thinks I did ovulate. But what about this random sized follicle? He doesn't think it's a cyst and blood flow etc was ok.

So we're taking a month off ttc (almost certain I'm not pregnant this cycle) and all being well, my period should come on Sunday / Monday. So looking like mid-May starting 🤞

I can't remember who asked about the adenomyosis? But it was just via 2 scans with my recurrent mc specialist and then later that week with a colleague and they seemed pretty certain but I know mri is the best way to diagnose. But today, I had a 3d scan and the doctor thinks I'm looking healthy - I do have lots of small fibroids which he said can sometimes look like adeno but he wasn't concerned about either. Although, interestingly said if we were paying for the ivf (this is our one funded nhs round), he would do a long down reg to manage adeno...

Anyway, I've waffled on. But I'm feeling better that we're moving ahead now.

Welcome @clolo we might be starting at the same time!

Hope everyone is OK xx