IVF at Guy's & St. Thomas' & general process/timeline

[Lill02]

Hi all,

This is my first ever post, but I've been following for a while. :)

After having all the usual tests, including a hycosy and hysteroscopy, we were diagnosed with unexplained infertility a while ago. We have now finally waited long enough to be eligible for IVF on the NHS. We've got an appointment back at Guy's & St. Thomas' tomorrow (we had to see the GP and ask to be referred back as we've now waited the required time frame).
I'm not 100% sure what will happen tomorrow, but I'm basically hoping they will agree we've waited the required time and suggest we get the ball rolling for IVF, i.e. fill in our funding application, etc. I'm really hoping this will happen, I can't face being sent away again after we've waited so long...
What have your experiences been? Does that sound like realistic next steps? Has anyone been at Guy's & St. Thomas' and can share their timeline?

Thank you!

@RiverRiot I know the shielding snot ideal, the nurse said I can still go to work but no other unnecessary journeys or so ailing and it’s going to be a long time which is more ideal with everything reopening and everyone making plans!
I also plan on not telling anyone until it’s all over and we know what the outcome is either way. I had a close friend who had IVF and told everyone about everything at every stage and so was constantly being asked about it which I’d hate and everyone was also so sad when it didn’t work. So yep just me, my husband and one close friend. My family and some of my friends have all had babies easily so ask questions like ‘what is IVF?’ Which I haven’t got time for!

@notyetamumbuttrying they should speak to you a little bit before so they can order all of your drugs so maybe just check with them. Ours is going to be a while because after egg collection I have to wait 2 weeks to come on then have a month off for my body to return to normal and then they’ll put an embryo in the following cycle around the time I would normally ovulate so it’s a bit dragged out but I’m happy as it means they’re keeping me safe. I’m just happy there’s some sort of action to be honest! Glad your lap went well. I kept asking my GP for one as I suspect I have endo but she refused to refer me 🙄. How did you find e experience? If this doesn’t work I’d definitely like to have one xx

@GJW2018 that's so bad she refused to refer you. Speak to guys, I didn't have to go via gp. I just told guys at my appointment that I suspect it due to painful periods, painful sex and infertility and they put me on the list in feb, had the op on Tuesday so it was pretty quick! Whole things been fine, endo found and removed, 2 adhesions removed from one ovary and bowel unstuck from somewhere it shouldn't have been. Should really up our chances at ivf now!
Ah I see, sounds good though, hope it works first time! ♥️

@RiverRiot I think we are not going to tell anyone while we are doing it. I think it's just too uncomfortable in the likely scenario where it doesn't work. I'm the same where people know it will be happening at some point but just not going to tell them when. I am trying to find an excuse for work. I'm at high risk of OHSS so I imagine there will be a few more appointments than normal and I'm just not keen to say what I am actually doing.

@RiverRiot I guess it's something they can't necessarily diagnose until they get to fertilising the eggs anyway so least it means they'd be able to cover that possible base too!
It definitely does help to have others to talk to that are going through similar.
Other than DP the only person who knows anything about our struggles let alone IVF is my best friend. I will tell her timescales etc & will have to tell work due to needing time off but I won't tell anyone else. How about you? I actually did say to DP would he be comfortable telling people if it works that baby is an IVF baby & he said he wasn't sure - strange one isn't it?

[quote Etonmess20]@thislittlebird hopefully your hospital were as thorough & friendly as mine were, I felt I'd have been able to say I do want to try X or don't want to try Y & we could have had a discussion about it. With the clomid it was awful though because every scan I went for they were like "everything looks perfect, it should happen in the next couple of months" & nothing 😬
Oh I didn't know about the trying two rounds privately before entitlement is voided but I definitely think I'd be on your wavelength with private treatment if I was in your position (I don't want to say "at your age" as you're not at all old but you know what I mean 😂). The costs are massively scary though aren't they, I'm petrified of NHS treatment not working as although we could afford private it would mean a lot of sacrifices in other areas.
I'm hoping you'll get a bit more info at your next appointment so that you can have the facts to make the best decision - the hardest part of all of this is the not knowing when treatment will happen, how long things take, waiting lists etc.
I really hope you enjoy your break & manage to switch off from it all [/quote]
@Etonmess20 I can imagine that's so frustrating to think the clomid is working ok.

I might be wrong, but I'm pretty sure when I read my CCG info it said two rounds privately or IUI would be fine but more would void our 1 x NHS round entitlement. I'm going to enquire when I see them next month.

Seriously it is very much "at my age" and not because I'm collecting my pension just yet but because it. all. takes. just. so. long. I'm losing my mind thinking about how long we've been waiting and the complete lack of urgency. We're both average earners and most of our money is tied up in our house, but I suspect we'll need to fund private one way or the other. It sucks tbh.

Since I last posted I've been thinking about my husband's MFI some more and I think I'm going to get him to see a private urologist. I would request a referral from the NHS but I don't want them to use that as an excuse to delay.

Really looking forward to a few days away, although I don't think it's going to be good for my BMI

@RiverRiot the more I think about it recently the more I think I'm going to document all of my concerns today date to PALS. My GP will likely respond like yours did. But right now they're seemingly uninterested or ignoring what could be our biggest hurdle, which is my husband's very low motility. Seems a bit odd to me that no one is interested in his 50% and we're talking to our local gynaecology clinic in May.

I like the 50/50 IVF/ICSI idea btw. Seems like a good tactic.

@GJW2018 it's not great that you had to go through all that but good to hear they're being OHSS aware and freezing. I had less than you at 28 follicles but it's one of the things I'm hyper aware of, I don't want OHSS/any damage.

@thislittlebird this is my worry with having a sibling for our (hopefully) NHS funded IVF baby. Obviously a lot of good luck required in the meantime but makes me a bit sad to think we would have to pay for a sibling. We're not high earners either, both have decent jobs working in the city (usually!) but by no means have spare thousands of pounds for private IVF
Definitely work a chat with a private urologist & as you say, gives them no reason to delay things. It does seem to take forever doesn't it? Just feel like you spend so much time waiting
Where are you off to for your break? Hope the weather stays as glorious for you!

I'm concerned as we're booked to go to Vegas in early July, obviously covid could put a stop to that anyway but I'm concerned that we could be called to start treatment any sort of time around there (2-3 months from our early May appointment). Bit of a dilemma about what to do tbh, my CD1 would be while we are there too & even if we don't start treatment until early august will I want to be living it up drinking cocktails in Vegas a few weeks before?! Really unsure on what to do about it all 😬 hate not knowing when it'll happen, feels like your life is on hold!

@Etonmess20 maybe at your appointment you can ask to start late July? No need to say cos of Vegas haha, maybe just make up an excuse about other commitments etc.

On your point on cocktails, I was going to ask - is the guidance on drinking still 3 months before treatment and is that super strict or? Wondering if I should be stopping now..

@Vparisi that was my thinking...I feel it's almost a waste going there potentially at the time of (or weeks before) treatment. I especially wouldn't want to delay anything for it as I can very easily change it. Was thinking of moving for a sunshine break a bit later in the year perhaps.
I was going to ask the exact same about whether I should completely give up now & if there's anything else people are doing to get best prepared

We just have close family and a couple of friends who know too. Won’t be telling anyone actual dates. We’ve had some friends go though it and a few who’ve had miscarriages too and it just all seems really tough so I defo don’t want to be reporting back crap news until I know where I stand.

@GJW2018 Yep I’m with you. When I told my mum we were struggling her very first words were “That’s odd cos all the women in our family get pregnant really easily” and then was all like “Oh you can’t just have IVF”. She got a bit of a shock when I explained the statistics! 🙄

@Etonmess20 @Vparisi I asked about alcohol as all the stuff says cut down/give up but other than ‘You may as well get used to it’ I never understood what the science was. The Dr basically said it’s not good for the eggs or sperm and told my partner that he shouldn’t be drinking more than six units a weeks (despite good SA) so god knows what it’s meant to be for women!

@thislittlebird Your partner’s motility was 50%? I thought this was in the normal range? Was his count OK? I’ve heard the motility can be a bit low if the count is fine/high - the logic is there is more sperm overall even if some are a bit slow or whatever.

@Etonmess20 Balls, you’re right. I hadn’t even let myself think about a sibling, what a PITA! Better start saving now...
When discussing unexplained the Dr said that she’s seen quite a few couples fall pregnant naturally afterwards, as if the IVF has woken the body up or something, so fingers crossed this happens for all of us!

@RiverRiot that's the worst part isn't it, having people potentially asking how it went & having to say it didn't work or whatever.
I hadn't actually even thought about the alcohol thing if I'm honest, not from the perspective of giving up before. We don't drink a lot but do have the odd bottle of wine at the weekend, it's kind of answered my Vegas question for me really even if the dates would have been ok & not delayed treatment. Feels pointless going there to not be able to enjoy it 🤷🏼‍♀️
I've also heard about people getting pregnant naturally after IVF so I'm hopeful that will happen for everyone! Do you happen to know how much embryo storage is at Guys after the CCG funded period ends? I've written it down as one of my questions for my appointment so I don't forget!

@Etonmess20 I cut down in December partly because I’d tried pretty much everything else and also after my 1st consult I was left believing I had DOR so wanted to improve the quality of my eggs. Although partner has cut down too I think keeping to six units will be hard for him. I’ll try and get him to stick to it in the cycle before IVF and up to EC though.

I’m not sure how much storage is at Guys specifically but I think the average is about £200-£300 per year. Then it’s about £1500ish for FET. I’m assuming that’s excluding meds but there is usually a lower dosage on FET, I believe, which should bring the costs down a bit. Defo a good idea to check as you say 👍🏼.

Ladies...I've had the call! I can start next month🥳 need to hear from the drugs company who will contact me next week then I start buserlin injections on day 17 as my cycles are short. I have a scan booked in for 17th May and she said transfer is likely to be 10 days later! I'm so nervous 😬 but excited at the same time!! Now to shift some excess weight pronto! 🤪

@notyetamumbuttrying AHHHHH I'm buzzing for you!!!!! Bet you are over the moon!!!!

@RiverRiot I've decided to give up entirely now, I wouldn't want to end up in the position where I'm blaming myself if it didn't work, no glass of wine is worth that! DP is on board with cutting right down so that's all good too!
I've been incessantly googling anything else I should be doing but think I have everything else under control. Takes over your life doesn't it?

Thanks for the info on storage & FET, definitely sounds more palatable than the cost of a full cycle 🙏🏼

@Etonmess20 so happy! Feel a bit giddy tbh! We're bk on the no booze train too now. Tough with pub gardens open but I'm just gonna use weight loss for my reasons for not drinking. All my friends love a good booze so will be pushing me no doubt!! And ttc/Ivf really does take over your life but hopefully we're all nearing the finish line now. 🤞🏾

@notyetamumbuttrying woohoo this is so exciting! Our first scans been booked for 4th May so we will likely be behind you with the freeze. So buzzing for you! Xxx

@notyetamumbuttrying that's the problem when life's been on hold for so long with covid isn't it? Feels like it's just starting back up then it stops again 😂 also bizarre to think we're (hopefully) giving up alcohol for probably a year!

So from a "notice" perspective, they've effectively given you near enough a months notice haven't they? Feel comforted to know you've had a reasonable amount as that's a big worry of mine!

@notyetamumbuttrying soooo exciting!!!

@GJW2018 ooh that's exciting too! We might cross paths at some point. We'd never even know would we 😂 this is what Dh and I look like 👩🏾‍🦱👨🏻‍🦲 haha
@Etonmess20 yup! God I really hope we all are 🤞🏾 never have I not wanted to drink more than I do right now 🤪
Yeah I'd say about that. They did check I wanted to start now so I'm sure if I said next month they would've given me that.
@Vparisi thanks hun! Hope you're well x

Oh yes it would be great to see some of you in there! We’re the lanky awkward looking couple 👩🏼🧔🏻 If I do see any of you. Just had an email booking for our meds to be delivered. They’re email comes up as Fertility2u which I nearly deleted it as junk. All booked in for meds to be delivered on 29th April. I’m usually fine with needles, I’ve had acupuncture and blood tests etc for years but am nervous about doing it on myself. I also watched a YouTube video of a girl documenting her IVF and she said the menopur really stings. Will all be worth it though 🤞🏻🤞🏻🤞🏻

@GJW2018 very much enjoying the emojis 😃 ooh yay to meds date. I've been told to hear from them by 27th April. I'm nervous about the injections too! Never had acupuncture before. Not looking forward to the stinging but anything for these babies!! 🤞🏾

@notyetamumbuttrying that is true but there is zero chance I am not cancelling my entire life when they call 😂 after we've been for our 1st appointment I'm going to broach the topic with work but I'm sure they'll be super accommodating - it's just the anxiety of it all

I'm also loving the emojis @GJW2018 , 👩🏼👱🏼‍♂️ this both of us, we're the confused looking ones 😂

So exciting for you both to be ready to start, so nice to see things moving for us all 👏🏻

@Etonmess20 right 😂
Yep, I'm telling my boss on Thursday so she can be prepared for the potential mood swings and general disinterest in work, at least I'll have a genuine reason at last 😆
Haha so you must look a lot like @GJW2018 then 😁
Yeah it's good some of us are soon underway now! 😃 you'll be soon too! X

@notyetamumbuttrying OMG that’s so exciting! Whoohoo!

@Etonmess20 Yep I think I’m going to do the same. Spoke to DP yesterday and he said he’s planning to go teetotal for a month beforehand. I was not expecting that, but happy he’s taking it seriously. Good luck with your boss.

@GJW2018 Are you taking the contraceptives the cycle before your short protocol? It’s on the flow chart they gave me but the Dr didn’t say if that applied to me or not. I’m sure I’ll find out soon enough but I just thought that was for long protocol, didn’t realise it was a ‘thing’ for short. 🤷🏻‍♀️

Loving the emojis too. This is us 👩🏻👨🏻‍🦰. We’ll be the ones who can’t sit still. 🤣