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!

Yeah I’m still really angry but I don’t want to stress myself out about it. Although I might mention it at the hospital when I go.

We have started getting printouts after wrongly putting our trust in them.

I would book a trip abroad if ivf worked, I think. Until then we need to save for the ivf. The dream is it works first time of course but I’m not convinced I have that sort of luck lol

Forgot to mention @notyetamumbuttrying

@thislittlebird it is super frustrating! I'm 28 & DP is 34 so granted we still have plenty of time but when it's already been so long it's soul destroying (as I'm sure you know)
Hopefully if there isn't so much they can do with the issues they've identified you may get fast tracked through for IVF - you'll have to keep us updated with how you get on
That's awful btw they told you your results were fine, you take what they say as a given that they tell you the truth so to find out they haven't must be awful. We watched the Guys IVF information seminar thing on you tube last night & it struck me how genuine the team seemed so Im hoping they'll do well by us all 🙏🏼 my care at the local hospital was also second to none as well so I'm hoping yours will be, that's their speciality so in theory you're in the best place
Clomid was very meh for me because all the scans I had they said it was working perfectly & then nothing happened 🤷🏼‍♀️ felt like a bit of a waste of 6 months tbh but I got them right at the start of March lockdown so I probably wouldn't have been any further forward anyway!

@notyetamumbuttrying you will be able to knock me down with a feather when (manifesting!!) I get a BFP 😂 really trying to be positive!
Hopefully you'll be a good gauge of the wait too but I'm going to have to call them around June if I'm still not clear on timelines so we know what to do, although probably a bit optimistic it'll be by early July

@Etonmess20 I am also 28! We will have too much in common at our appointments on the 4th May haha.

Must be terrible for everyone here who is unexplained...I have been sick for like 2 decades so have always known so I can't imagine the stress of not knowing why!! Must be so frustrating. Sending love love all.

@thislittlebird just saw your question on timing. I went to GP early Dec and was referred then had virtual appt first week of Feb and heard about funding last week. Didn't have any other appointments or scans. Was much quicker than I thought. Hoping it will be for you too!

@Vparisi I'm not convinced we're not the same person....or at least twins separated at birth 😂 wonder if it'll be like looking in a mirror on 4th May 😂

It is tough but also can't imagine how difficult it's been for you being ill for so long & the effect that's had for you, just a different set of rubbish & undeserved circumstances to come to terms with - sending you all the love too!

@thislittlebird well fingers crossed all goes well for you my dear! 🤞🏾
@Etonmess20 ha, love that saying 😂 yeah I think will be. Every time my phone makes a noise i pounce now, gonna be a nervous wreck if they've not called by July 🤪
@Vparisi sorry to hear you've been sick for so long, that must be tough 💐

@notyetamumbuttrying happy Friday! omg tell me about it 😂 every single day I'm like "will they call" & ive not even had the appointment yet 😂
Did they mention how much notice you get when they call?

@Etonmess20 happy Friday to you too! Lol😂 nope none! Gonna be a long few months!!

[quote Etonmess20]@thislittlebird it is super frustrating! I'm 28 & DP is 34 so granted we still have plenty of time but when it's already been so long it's soul destroying (as I'm sure you know)
Hopefully if there isn't so much they can do with the issues they've identified you may get fast tracked through for IVF - you'll have to keep us updated with how you get on
That's awful btw they told you your results were fine, you take what they say as a given that they tell you the truth so to find out they haven't must be awful. We watched the Guys IVF information seminar thing on you tube last night & it struck me how genuine the team seemed so Im hoping they'll do well by us all 🙏🏼 my care at the local hospital was also second to none as well so I'm hoping yours will be, that's their speciality so in theory you're in the best place
Clomid was very meh for me because all the scans I had they said it was working perfectly & then nothing happened 🤷🏼‍♀️ felt like a bit of a waste of 6 months tbh but I got them right at the start of March lockdown so I probably wouldn't have been any further forward anyway! [/quote]
I really hope they can fast track us @Etonmess20, I keep worrying the won't and will just tell us to keep trying for another 6 months or something ughhhhh. I will definitely keep you all updated.

I'm trying to do my research into options for private as well right now, working on the assumption one NHS attempt working would be exceptional good luck and I don't feel we've been very lucky thus far.

Honestly it was such a bad experience with the GP so far during all this and I'm so nervous of them neglecting us again tbh. I absolutely trusted that they were right when they told me the results and I got burned. So I'm going to look into our options privately in case they throw us a curveball and I don't want to wait any more.

Did they send you the Guys thing or is it available online? I know they have a private arm too, I should probably seek it out.

What made them put you on clomid? Because you're unexplained? It worked first time for my sister when she was struggling to conceive her first way back when in her 20s. I want to talk to them about it all and make it clear I want the IVF to be moving forward, don't just stick me on clomid and leave me to it for six months. I have high AMH/AFC too so I would need to be monitored. Did they monitor you?

@Vparisi that's interesting, thanks. Is that because you have an identified issue do you think? It all seems hard to gauge.

Thanks @notyetamumbuttrying!!!

@thislittlebird it's so hard isn't it? I guess all you can do is see what they say when you have you appointment, although I must say I never ever felt pressured into any treatment with my local hospital or that they were stalling me etc. I did also get my clomid literally just as we were going into lockdown last March so practically all of my "treatment" has been during covid which I doubt helped timelines. I was fully expecting the clomid to work if I'm honest, I had 3 monitored cycles followed by 3 unmonitored (they didn't change my dose & knew how I'd reacted to it) & at every scan it had worked perfectly....just never worked at getting a BFP. They do also offer another medication that essentially does a very similar thing I think but is given to people in certain circumstances (letrozole I think) so that may be better in your circumstances perhaps. I think we were put on clomid because of the unexplained aspect & because on paper there's apparently nothing wrong with either of us 🤷🏼‍♀️ I was fully on board with trying it - if I'm honest I never ever expected to still be TTC now & be (hopefully) starting IVF within 6 months

Have you found out what you'd be entitled to on nhs? I think ours is 1 fresh & 2 frozen cycles so I'm kind of taking that as 3 goes rather than one
Don't think it can hurt looking privately for now & getting all the facts etc, I kind of thought the same when we were waiting but I was petrified of losing our NHS entitlement & at 28, didn't feel the clock was ticking for me quite as fast as if I was older tbh. That said, if you're in the position to be able to fund it without having to wait for NHS then that's understandable you wouldn't want to wait
If you search Guy's & St Thomas' IVF Seminar in YouTube it should bring up the video we were told to watch, it's posted by the hospital & is 47.32 long (so you know you have the right one!). I found it helpful in explaining the process not only in scientific terms but also in a practical sense like "we will call you on X day & you will do this on Y day". I watched it & was struck by how knowledgable yet kind they all seemed!

@Etonmess20 I think that must be really hard because I would expect clomid to work too tbh. It's very annoying that it was all working like it was supposed to and still no bfp. My sister had it in her 20s and it worked first time so in the back of my head I thought maybe that's what I need, but now we have male factor too...I don't know. I'm not sure when they offer letrozole vs clomid.

I read the CCG guidance and it was 1 cycle on the NHS for us and you can have two privately before you void your NHS one, I think.

I would be more chilled about waiting but I'm 38 next month and we started trying when I was 36. It's frustrating. Most of our money is in the house so I'm anxious about private costs but with only one round on the NHS we're likely to need to go private at some point anyway.

I'll look up the video, thanks! We're away next week and I know I'm going to be googling this stuff and thinking about it a lot.

@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

Hi Ladies, I called yesterday to be the pest that I am and they said they’re currently working through the people that had they’re initial appointments in January to start when they next get their period so hopefully won’t be long! Xx

I had a laparoscopy with them on Tuesday this week and my follow up is to be when my first period starts which is next week (as long as the lap doesn't delay it), so looks like they are moving fast again! Good luck everyone 😃

@notyetamumbuttrying

I had a laparoscopy with them on Tuesday this week and my follow up is to be when my first period starts which is next week (as long as the lap doesn't delay it), so looks like they are moving fast again! Good luck everyone 😃

That is so exciting for you!! Fingers crossed xx

I got a call one hour ago saying they had to reschedule my appointment and I was like oh no! But it was just to change it to 2pm to 2:30 on the same day haha. Anyway I asked her what it means about having to start treatment within 3 months and she said it means within 3 months of that appointment which is interesting. I was wondering how my funding could be approved April 12th saying needs to be 3 months and the appointment could be May 4th and treatment is a 3 month wait. She said it is really flexible at the moment due to pandemic delays but they're moving really quickly at the moment. Hoping I can start in July.

@Vparisi oh god I'm so glad it's just half an hour they moved it by 😂 I thought you were going to say a different day! That's masssssively exciting about possibly starting in July, really hoping for the same for us 🙏🏼

@notyetamumbuttrying hope you're feeling ok after your lap on Tuesday

@Vparisi thank you 😊 god, hate when they put the fear of god in you and it's only for a half hour change 🙄😂

@Etonmess20 thanks, yeah not too bad luckily. I hope it's July or earlier for you!

Hi ladies, happy Saturday!

We had our post funding appointment the other day and were also told 2-3 months to commence treatment.

I knew there were going to be a lot of forms to sign but crikey there really are a lot of forms! There were some rather organised couples there with clipboards, which I thought was a great idea.

As we’re also “unexplained” they said they were going to put me on short protocol and that they will do a 50-50 split of IVF/ICSI as sometimes there can be a fertilisation issue with unexplained. She did say though that couples with this ‘diagnosis’ (it’s not really though is it?) can normally expect good outcomes so that’s a plus.

@Etonmess20 Hope your mum is doing better now and your work stuff has calmed down a bit? Interesting that your old clinic put you on Clomid, I’ve been doing some research into it (basically is the ANYTHING I can try?! 😂) and a lot of the papers I read said the success rate of women who do ovulate normally falling pregnant on it is pretty low. But hell, anything is worth a go at this point right?

@thislittlebird I’m so sorry your GP did that, it’s just disgusting! Mine did something similar and I took them to task about it. They basically just said they’re not experts in fertility and don’t really understand how much of a big deal even being a little bit out of the perimeters can be. It didn’t really fill me with confidence tbh.

@GJW2018 Well done for being a pest! I had my first appointment in Dec (referred Aug) and only just had our post funding one so, despite what they say, I don’t actually think there is any rhyme or reason to their chronology. So don’t feel bad at all for wanting to find out where you stand.

@notyetamumbuttrying So glad your lap went well. Your doctor made me laugh re SA. I like that they seem to have a sense of humour. I was on CD12 so when she was doing the scan I was like can you see if there’s one ready to pop? She said no but “You don’t need to worry about ovulating, we’ll make you ovulate. LOTS of eggs!”! 😂

Hi @RiverRiot happy Saturday to you too!

Yes everything is loads better with my mum & work thank you, life feels like it's calmed down loads which is always good!
That's interesting about 50/50 with IVF & ICSI, does that essentially mean they will leave 50% to fertilise naturally & will do ICSI on the rest then just see which are the best for transferring back in? Btw completely agree about "diagnosis", unexplained is literally the absence of a diagnosis surely but it's nice that they're reassuring & thorough in their approach.
I think with clomid it was maybe just something to try cus of covid with minimal intervention required, they suggested to me with this super ovulation more eggs released = more chances but how true that is I don't really know. I get why they do it though & don't regret giving it a try!
Are you feeling fairly positive about it all since your appointment? Did you get a nice vibe from staff etc?

@RiverRiot yes I think this is from people that have had the clipboard/form filling appointment in January are starting cycles now.

Although after I phoned the other day the doctor phoned me back and said that because of the delays their end for us (we were referred in 2018 and supposed to start IVF in 2019, had our funding appointment etc then they lost us in the system and I had to chase them for a year ... it’s been a nightmare!) they are ready to start my cycle when I get my period in 2 weeks. As I have PCO with a super high AMH and had 50 follicles in my AFC scan they’re doing a short protocol and then freezing all embryos then having an FET the following month because I’m at high risk of OHSS. He didn’t mention ICSI so that’s interesting that they are going to try both. We’ve been dealing with Dr. Chowdry and I have to say he’s been amazing. The nurse then called me, went through all the medication and said when I get my period I’m to come in for a scan the next day. She was saying that the meds are dealt with by another company and that they will contact me to arrange delivery. It seems to have all kicked up a gear out of nowhere which I’m super excited about and for once I can’t wait to get my period! The only other thing she said is that now I have to shield because if I test positive for Covid all treatment will be cancelled. I’m a teacher and am back at school next week with hundreds of kids and adults so I’m just terrified of getting Covid now!
Hopefully you guys won’t be far behind now as it’s definitely getting moving. We worked out our embryos probably won’t be put back in for 8/10 weeks so hopefully some of us will be doing it together.
Lots of love to you all xx

@GJW2018 that is ridiculously exciting & I'm so glad & happy for you that they've got you in ASAP to make up for the delays they've caused.
Got everything crossed that it all goes well for you 🤞🏻

@GJW2018 OMG I cannot believe you had to go through that! I’d be absolutely spitting. I’m so pleased they’re making up for it now though!
I’ve had a few different doctors so far, the one the other day (didn’t catch her name) did say that the cycle would be cancelled if either of us caught Covid but didn’t mention shielding. How do you think your school will take the news?
I also asked about OHSS and she said that if we needed to do a freeze all we’d be entitled to an extra frozen round which is great news and hopefully applies to you too. Although, fingers crossed you don’t need them, of course!
The absolute best of luck to you and do keep us posted.

@Etonmess20 Oh absolutely, if they offered it to me now I’d definitely take it, no question.
Yep that’s basically it. The ICSI is to maximise fertilisation chances and they’ll pick the best. She couldn’t say why there might be a fertilisation issue - just one of the many fun things about unexplained. Although, that said, I don’t think it’s necessarily easier even if you do have an answer. It’s basically just sh*t all round.

I can’t say I’m excited yet - but then I’m one of those people who has to actually be at the airport to get excited about my holiday. 😂 But it is nice to have a plan and the Drs seem quite no-nonsense, which I personally like.

It’s weird to think that next cycle might be that last ‘natural’ one for a while but would be awesome if we were all going through it at a similar time and to have that collective understanding and support for each other!

Is anyone planning on telling friends and family timescales? e.g. Egg collection is next week etc.
I think we’re going to try and keep it as quiet as poss. Only because no one else is like ‘It’s my FW so Bob and I are going to get jiggy tonight’ or ‘My period is in two days so I’m going to spend ten mins of my morning squinting at a test’, you know?
I’ve told certain people it’s happening of course just not when.

@RiverRiot happy Saturday to you too! Glad you're a bit closer along too now.
Thanks, recovering well so just gotta hope it makes all the difference now! Ha yeah they're good at keeping it light hearted aren't they, considering it's a really shit time for us all!
I've told ppl we're doing ivf and should start in the "summer" only my mum knows that funding is approved so I'm tempted to keep her informed of all dates as we do chat a lot. Will keep it from everyone else though, no expectations or keeping ppl informed then. Plus if it doesn't go well, you don't have to report back shit news!

@GJW2018 we had dr chowdury at our last appointment. He suggested long protocol for me because of my low amh. Sounds similar to me in terms of timing and process then. Was also told to call the nurses on cd1. Due on tomorrow but not sure if it'll be delayed due to the op. Don't have my usual pre af symptoms. How comes it'll be so long to transfer for you?