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!

Hey @Kit82 we have also had our referrals with Guys ‘lost’ twice. We were initially referred in 2018 and hopefully are having our initial appointment 1st Feb 2021! So I’m completely with you on the upset and frustration. I haven’t received this email though? I wonder who they’ve sent it out to? Although they NEVER answer the phone it might be worth calling them to get a bit of clarity. I feel like patience is something I didn’t have before starting this journey and it just seems to get tested more and more each day! Please keep us updated with how you get on.
Sending lots of love to you all xxx

@Kit82 I've not received that email but my first appointment with them isn't until the 22nd feb so I'm probably low priority for now. I hope you get the follow up soon so that you know what's going on. Very frustrating for you, so sorry 😣

Thanks ladies, calmed down a little now, been trying to take my mind off it by decorating today! We are in such a dilemma as we were told to stop TTC now we are 'in the system', but can't help thinking maybe we should?! I know in my heart of hearts there's a slim chance of success and high risk of continued chemical/ miscarriages but there's also part of me thinking what if we wait and it's a whole year before we start treatment and that's a year wasted not at least being proactive and trying. However we are not only having IVF but PGD- preimplantation genetic diagnosis alongside it due to genetic issues on my husbands side which they think is causing the miscarriages and don't want to fall pregnant and then be taken off the list to then miscarry again and be at bottom of list, ahhhh so difficult to know what to do!!

I think I will write the letter of complaint about the referral situ, see if that helps push us up the list, might not make a difference but at least I will then know I've tried! @GJW2018 did you make any complaints at all?

I wonder if this email went to those who have already had their initial consultations and those who are just about to begin treatment? I really hope your initial consultations aren't pushed back, will keep my fingers crossed for you, that's the appointment I was desperate to have because it then felt like I was on the journey if that makes sense!

Anyway, hope you've all had a nice day, thanks for your kind words, sending lots of love back xxxx

Morning ladies, just had my phone call from Guys to cancel our Feb 1st appointment and put us back on the waiting list 😫. I just feel like it’s not meant to happen/meant to be. My excitement/hope has been wiped out, feels like it’s always in the future and just getting further away each time. No @Kit82 I never logged a formal complaint as I was scared they’d put our IVF back even further but sent endless ranting emails/went in in person/left voicemails with no response.
Any recommendations for going private?? 😔

@GJW2018 shit I'm so sorry to hear this, that is rubbish!! I'm very scared they'll do the same to me too now 😣 I've been looking at care London for private. Had a chat with one of them and they seem really friendly and professional. Excellent live birth rates too. Give them a google.

Oh @GJW2018 I'm so sorry, what horrible news for a Monday morning. I know that feeling well, so disappointing. I think I'm at the point where like you I feel that it's so far away I can't even think about it anymore as it doesn't seem like it will ever happen. However I am a strong believer that things happen for a reason and because we want this so much we will be Mummy's one way or another, we will get there, it might not be the path we originally thought would take us there but we will. Sending a big hug. I'm not really sure where this burst of positivity has come from but I'm rolling with it today, trying a new approach to see if it helps me! Give it a few days to reassess and refocus and you will feel a little lighter.

I think Guys are just trying to minimise the amount of people going into the hospital due to the state of emergency they are in. We live a couple of hours drive away and the thought of having to go on for an app is scary given this new Covid strain but at same time like me I expect you feel willing to risk it just to get started in the process.

Let's keep in touch and update each other on here. This Covid situ changes rapidly all the time so I'm sure once Guys have a handle on it and the vaccine is rolled out it won't be too long for your initial app xxxx

I received a call today and it’s seems like they have cancelled our appointment. Due to COVID-19 they are unable to reschedule. They will contact me again soon. Because of some personal reasons I don’t think things will go as planned but there is always hope.

How’s everyone coping with the 3rd lockdown? I miss going to the shops . I hope we all follow the government guidelines and the sooner we will get out of it.

Has anyone started taking Folic Acid yet? Did it help with your treatment.

Before you start your treatment they will ask you to take folic acid tablet to help boost our chances. I do not know how much of it is true.

@Muslim82 ah sorry to hear it's been cancelled for you as well. I hope you're ok. Yes I take folic acid, have done since I started ttc. You should take 400mcg a day unless you're deficient in it. It's to help avoid any birth defects.

We are waiting for PGD too but possibly a little behind you. We are out of area, funding has been approved locally and they will pay Guys as we don’t have a service here. Apparently they release the funding for an initial appointment first and then the other part is released if it’s ok to go ahead.

We saw Genetics in October/November time virtually and they asked us to send blood samples which we have done and hadn’t heard. I emailed at the weekend and heard back today that they have our son’s blood test but not ours but there is a bit of a backlog in the lab. I was a bit concerned they’d have congealed after sitting too long in the Christmas post!

The Geneticist said in her email there are no current plans to suspend treatments but it’s a constantly evolving situation.

We were initially told maybe 3-4 months from seeing genetics to ACU appointment and I usually start the pill at that appointment so I was thinking that might be February but sounds like maybe not.

Fingers crossed for all of you.

I’m doing PGD with guys, I had my egg collection in October last year (was June but cancelled due to covid). I’m now waiting for an FET and I’ve had it confirmed this week that I should be transferring w/c 15 March. I’m so confused now that they seem to be cancelling people did they say they’re shutting entirely? I’ll be gutted if they’ve agreed a date and then U turn within a week!

Hi @ThePurpleFairy,
That sounds really positive that they called to arrange that last week. Maybe with the falling cases and vaccine they’re starting to book things back in? The lady that called me to cancel our appointment didn’t say much just that they were having to cancel our appointment and we will go back on to the waiting list. She said she couldn’t give any timescales as the reason was that they were on critical alert not that they were closing so it seems like from your call they are still going ahead with some treatments maybe just delaying slightly.
Can I just ask about PGD, how did you know that there is a genetic issue? We’re you tested for this? I feel like we’ve not been tested enough.
I W as so disheartened by our cancellation that we booked a private consultation and scan for 26th Jan... only costs £450 😩
Hope everyone is keeping well xxx

@GJW2018 hi there! I’m using a satellite clinic through Leeds, and it was Guy’s telling Leeds they were happy with the proposed dates and then Leeds telling me, so I’m hoping that there isn’t just a delayed message. I do seem to remember after the covid cancellation they started up FET a bit before egg collections because they’re a much easier procedure, so that maybe why, unless I’m cancelled too and just haven’t had the memo yet.

With my genetic issues there was a suspicious pattern of cancer history in my family at quite a young age. My grandma had investigations done with some more of her family and the fault was found. My dad had already passed away, but I was tested in my early 20s and I have it so it’s confirmed he did too. What have they done for you so far? Honestly don’t worry, I was alarmed they never took any blood from me this time for the genetic part, they only took from my husband. I used to be petrified of needles so I did a saliva dna sample way back when... but they built my probe and tested my embryos so I guess that sample from way back was enough! I have a feeling my grandma’s dna to help is also on file somewhere from when they did my tests. They didn’t actually tell me anything though so I’ve no idea what they used, just that it was done. It’s very clever! Long waits though, we went to our GP to kick it all off August 2018 and here we are now all this time later. It’s so very hard but private PGD is expensive, honestly if you can hang on and wait I would. Guy’s also have very good success rates and I think are leading in the U.K. for PGD. Their communication absolutely stinks, it’s the worst, but they know their stuff when it comes to the actual treatment x

I realise it’s so easy for me to say this now having got this far, wind back 12-18 months and I was in your position raging at the people telling me this. But honestly it’s so true, I know how hard it is to find the patience though

@ThePurpleFairy it seems they're just being selective with what they cancel. I haven't heard anything still and my initial consultation is booked for 22nd feb. Could be that it's too far away still or it's not getting cancelled. Who knows 🤷🏾‍♀️ let us know if anything changes your end. Best of luck with everything x

Hi ladies

@ThePurpleFairy and @PeigiSu good to finally find others going through PGD, well not good as wish we weren't but you know what I mean, was feeling quite lonely. We live 2 hours drive from London but will be travelling to have treatment there as nothing else closer to us that offers the PGD sadly.

@ThePurpleFairy sounds as though it's all systems go for you for March, I doubt they would have recently called you with an appointment if they weren't sure it was going to take place, wishing you lots of luck. Is this your first FET? I hadn't realised it was such a gap time wise between egg collection and FET. They said they already have a probe built that they use to test our genetic issues so this should make it quicker to get the embryos tested but I'm not holding my breath.

I just received an email from Guys in reply to one I sent 27th Nov!!! Communication is not their strong point and sadly that's what we all need for reassurance. However I have heard they are very good at what they do so hanging on to that!

@GJW2018 regarding PGD, I had all the tests imaginable as did my husband but it was the last blood test they did that found he has a reciprocal translocation with his chromosomes. I am able to get pregnant but it just doesn't stay because the chromosomes are too muddled up or missing so due to recurrent miscarriages and all other tests coming back as normal our local consultant requested these last set of bloods and this is what we found. Hence why we were referred to Guys for PGD. It was a massive shock and very upsetting, but sort of gave us some answers.

However in our first appointment with ACU at Guys the Consultant in a very blasé way said 'oh you've got endometriosis too' which I was told I didn't have by a local consultant I saw after they found I had a tilted womb and 'kissing ovaries' they said it was just the way I was made and nothing to worry about but Guys said different so maybe that's also causing the fertility issues as I haven't been pregnant for a year now which has worried me- however we haven't been in right frame of mind to properly try and have been told to stop.

@PeigiSu our genetics app was 10th Aug 2020 and we had our initial app with the ACU 10th Dec 2020, we were originally told 3-4 months wait to start treatment from the ACU app then when we saw consultant on 10th Dec she said 6-8 month wait, it's so confusing and frustrating

@GJW2018 I don't blame you for booking a private consultation, I guess that's one positive that you can do that as us PGD ladies can't sadly. Let us know how you get on, wishing you lots of luck xxx

@Kit82 yes this is my first FET so I’ve no idea what to expect. Because this was my first cycle they didn’t build my probe until after they knew I had embryos to test - which is fair enough as they’re expensive to make. So I had to wait 2 months for results. Any subsequent cycles it would be 3 weeks for results. Your condition, is that what is known as balanced translocation? Those results and also when embryos just need to be sexed into male and female (for 100% conditions on to either sex and 0% to the other) only take 3 weeks, unlike the single gene tests, so you shouldn’t have as large a gap

I’m lucky that I communicate via Leeds as an intermediary and their communication is much better, but Guy’s are truly terrible. To be fair I keep hearing it is just one woman by herself so it’s not her fault, but this has been going on a long time, they need to hire more admin staff, there’s no excuse really!

@Kit82 - yes totally know what you mean, kind of nice to have people in the same boat even though it’s not the nicest boat and I’m not wishing it on you! Thanks for your timeline. They said 3-4 months from genetics to ACU at our appointment but that was obviously pre- new strain etc so I’ve not got high hopes! We are like you, about 3 hours away.

@ThePurpleFairy I think I’ve heard of other places doing frozen transfers but less able to do egg retrievals because the sedation puts more risk of needing to do aerosol generating procedures which are higher risk for covid transmission as well. Fingers very crossed for you.

@GJW2018 Our genetic issue isn’t anything to do with fertility we found out we are both carriers when my DS was born with the condition. As it happens we had struggled TTC and were about to do the paperwork for IVF when we found out I was pregnant with DS. (I know those stories are annoying). As we have a 1 in 4 chance of another child being affected we aren’t going to try naturally again and are going for PGD. How far are you with the process? Hope your private appointment is useful.

Hi All,

I was referred just before Christmas to the Guys ACU from my local hospital - does anyone know how long it was from their referral until their initial appointment?
I was told by my hospital (Darent Valley) that there was a year long waiting list but from some of the replies on this thread it doesn't seem it is that long! They also didn't explain the next steps at all but hopeful that will be the purpose of the initial appointment.

Hope everyone is well in these rubbish times x

Hi @Etonmess20

I was referred in Aug and got a phone call in Nov for phone consultation in early Dec.
They aim to contact you within three months of referral but can’t guarantee it atm and I’ve seen on here that some initial consultations have been cancelled.

According to an email I received from them they have a staffing issue due to Covid and I know that certain procedures are also being cancelled/put on hold until at least the summer. For example, I had a failed HSG and normally would go on to have a lap and dye but these are all off the table for six months.

I also found out via my GP, rather than Guys themselves, that I’ve now been ‘released’ by them until I’m eligible to be re-referred for my NHS round of IVF. So I still don’t know if my tubes are buggered and have basically been left to my own devices in the meantime which is just peachy. They are pretty well know for their shocking communication though so I’m not entirely surprised.

I will say as well that if you do get a consult with them in the future to do it in person or via Zoom. I went for the phone consultation option and massively regret it.

Really sorry I can’t be more positive but hoping this bloody coronavirus does one soon so life can get back to normal and all the ladies on this thread (and elsewhere) get their consults and treatments!

Hi @RiverRiot thanks for your response!
It's helpful to get an idea of timelines even though they may change due to covid, possibly been spoilt by the amazing care & communication I've received at my local hospital so far. Hopefully won't be too much of a wait until I can at least get a consultation/further info
What was it you particularly disliked about the phone consultation?
That's awful you didn't hear directly from them you'd been released until you're eligible for the free round on the NHS. Is that due to length of time TTC? So frustrating you don't have a definitive answer on your tube situation either. This whole thing is such a head f**k isn't it? I've been reading a book about positivity during fertility issues but it's such a hard slog & I really do struggle to be positive

Hi @Etonmess20

I was referred in July 2020 (also from Darent valley). I had a face to face consultation at the end of December 20- I had an internal scan, my husband and I both had bloods, we signed all the consent forms and husband got booked in for his SA. We are now waiting to hear about starting treatment but as @RiverRiot we revived an email saying there may be delays/ further cancellations of appointments due to COVID.
I was also told by Darent Valley that the wait was 1 year but then a nurse at Guys told me it was about 4-5 months. Who knows now due to Covid?
XxX

Hi @JadeS174 that's really helpful
I assume you had already had an internal scan & Your partner had had an SA before you got to guys? Do the tests have to be more recent? (I've seen previously within a year so my partner will definitely need another SA too)
This is probably a bit of a silly question but does treatment happen at guys or are you told you are allowed to go to somewhere else to use your NHS entitlement?
I was getting a bit itchy I hadn't heard from them yet but definitely need to be a bit more patient by the sounds of things 😂

Hi @Etonmess20

I was only offered Zoom or phone call at the time so chose phone. I have elevated FSH and the consultant scared the bejesus out of me about this. I think it’s easier for them to throw numbers and stats at you and tell you (repeatedly) “Don’t get your hopes up” when you’re just a voice at the end of the phone.

I’m also not convinced the Dr was properly prepared as they said they didn’t have my partners SA when they did and said my scan was fine when I’ve since received that myself and think I have slightly thin lining. I feel like they would be less off-hand and brutal if they could actually see the whites of your eyes.

In my area you have to be TTC for three years so I’m a few months off that. It’s not long to wait but the other issues are a worry so would prefer to have answers sooner rather than later really.

@JadeS174 would know better than me but I believe once you’re eligible you can take your IVF funding to other clinics if you wish. It’s something I’m considering but apparently Guys are great once you’re actually undergoing treatment it’s just a shame about all the nonsense beforehand.

I hope you both get your consult/treatment soon. 🤞🏼

@RiverRiot oh that's horrible! You really don't need scaring with stuff like that ☹️ granted they need to be realistic but, like you say, it's easy to be quite blunt when you're a voice at the end of the phone rather than an actual person in front of them. I'm sure the feeling they weren't properly prepared didn't help either, makes you almost feel like you don't really matter doesn't it?
Are you straight onto IVF once your three years is up? Do they mention what type of IVF you will be doing or is that for further down the line?
I think my area also requires TTC for 3 years (it's based on GP surgery location isn't it? Which annoyingly is in a different CCG to my house I think) which is not until October but I'm sure with the inevitable delays that won't be too far off either
Thanks for the tip though & I will make sure I choose zoom if the face to face appointments aren't available.
So frustrating that their communication seems to have been so bad when they offer such good care once you get to it. Fingers crossed now the pressure seems to be coming off London quite so much in the covid stats they may be able to try to start to get things moving again.
AF arrived first thing this morning so feel extra rubbish about it all today ☹️