IVF at Guy's & St. Thomas' & general process/timeline part 2

[HereToLearnAndShare]

This is a continuation from IVF at Guy's & St. Thomas' & general process/timeline discussion

@Etonmess20 I know it feels super annoying to be that person but I think it is good you did! Fingers crossed they get back to you tomorrow with some news!

Thanks for all the info @morganablue , bit disheartening to hear how many people there are! Sometimes I forget there are other patients besides us on the forum ha.

Just putting in my head into this new thread! I’m almost officially in the Guys gang now. Finally got a GP referral to ACU last week after much delay. I spoke to my new GP and he was great, offered me guys or kings but I knew you all had liked Guys so requested Guys. A little bit concerned by how long it all might take with my age being a major factor and haven’t ruled out a private round(s) but will ask them timelines once I know the doctor has sent the letter off. That’s if I don’t get sent packing again, I fully expect it at any given moment lol. I still have my complaint logged, hoping that will be useful, who knows.

Hi to @morganablue and congratulations to @RiverRiot! I skimmed the end of the last thread, sorry if I missed any news.

Woohoo @thislittlebird! That’s great news! So glad you’re en route to Guys now!

Welcome also @morganablue!

We're just moving this to the infertility topic for the OP.

@HereToLearnAndShare ahhhh I knew you'd mentioned a lap before, it does make you laugh how these timings work doesn't it?! 😂 if they'd have said you could have had it done here before you'd have just waited although least it's done now!

@morganablue that's really helpful to know! I still can't wrap my head around restrictions relaxing everywhere else but still having to go to these appointments alone. You'd hope it would be better after July 19th but I wouldn't be surprised if they just keep it the same as it is now. Has your DP been doing the injections for you? How have you found it? I'm 100% getting my DP to do them, I'm not at all frightened of needles but I can't fathom sticking them in myself 😬

@RiverRiot you're so right, just feel like you're making them even busier but it is what it is, if they hadn't told me two weeks nearly 3 weeks ago I wouldn't be emailing again! Hope you're feeling well!

@Vparisi I'm bloody hoping so, will keep you updated! Least then if I get progress you can nudge them as we should be literally the same for timelines!

@thislittlebird welcome back lovely!! Glad to hear you're FINALLY being listened to 🙏🏼 hopefully you'll be joining us properly verrrrry soon!

@thislittlebird congratulations!! I was just wondering today where you are and if you were ok. That is great progress

@Etonmess20 absolutely! I am grateful I had the option to do the surgery earlier.

@thislittlebird Congrats! Hopefully, you will have your appointment soon.

@morganablue just watched the video you posted. It is super informative and well-explained step by step. Thanks for sharing!

Lovely to meet you (virtually) @GJW2018 and @thislittlebird, thank you for welcoming me!

@Vparisi absolutely, both times I went it was full of couples, really makes you think. I also wish they knew about this forum, only a day in and I already feel much less alone in this mad process

@Etonmess20 Aw! I am okay with needles, but G is doing the injections, so he feels more involved (and less useless, in his word ). I had to administer one myself when he was away and my only tip is to place needle, directly on the pinched skin u want to inject and slide in (rather than having to do some sort of "hara-kiri" that really did not work for me! )
It is also a bonding moment.

@HereToLearnAndShare so glad you found it useful! I have watched it few times and still come back to it, especially the embryologist part.

@morganablue that's good advice actually! I'm just so glad DP is totally fine with doing it, it does also help him feel more involved which is nice. Easy to forget it's a difficult process for them as well as us! So pleased you've found us all & feel like this is helping support you!

@thislittlebird Oh yay, that’s such great news! 🥳 Hope your urology stuff is going well and Guys can finally help you turn a corner.

@morganablue Thanks for the video, it was so nice to watch it again.
In case they haven’t discussed this with you yet the only thing I’d say is that, like most clinics these days, Guys prefer a day 5 transfer where possible.
If you’re NHS they also don’t generally give you a day 3 update, although they do check on the embryos on day 3.
So you basically walk into transfer on day 5 (alone) not knowing how many embryos you have left and just praying to god that you at least have one good enough for transfer!
Oh dear, I’m still getting a bit cross again now! 😂🙈
I really hope they change this come the 19th.

@Etonmess20 Absolutely, the nurses are wonderful but what frustrates me is the inconsistency. e.g. Not being transparent about wait times. I believe a few weeks ago two ladies on here got two different answers about this on the same day!
Also, I didn’t get an estimated day of EC/ET etc. ahead of time like @morganablue and although I did have the nurse explain how to use the drugs at my baseline, I was given videos that came from the drugs company. 🤷🏻‍♀️
They do certainly know their stuff at Guys but I just wish their communication was better all round really. I hope you all get moving very soon. 🤞🏼

@RiverRiot that's exactly it, I was told 3 weeks ago it would be "another couple of weeks" I feel like you should choose your words more carefully if it won't actually be 2 & is more likely to be 3 or 4. If they'd have said a few more weeks I wouldn't have been emailing until at least next week. Creates more work for them being misleading.
Not having an expected day of EC/ET isn't ideal either, we have all still got lives outside of this process & need to know (mentally & practically) what days we're expecting to have certain procedures
All the negative feedback I've seen & heard about Guys related to communication, feels like a common theme!

@Etonmess20 Aw, that sounds ideal as drugs are already harsh on the body, so always good to have back up and not doing it alone. I found that I am also using a whiteboard, calendar etc more to share the load G, so he feels part of the process, than for me. Honestly when you start you do not even need a reminder (although useful) as it is all you think about.

@RiverRiot That is super useful to know! It is honestly quite awful the amount of unknown you walk alone during the process, because of COVID. I am dreading Friday as it is decision day and hate that I will be on my own when getting news about EC. I will call them at any time of the day if they do not give me an update on day 5!
Besides, I am really feeling the drugs now and I am only on day 8, so starting to get a bit panicky that I need to wait for a scan on Friday, which is day 11 (not 9 or 10 as guidelines suggest). I am probably overthinking it, but I am feeling so bloated, lower abdominal pain and generally discomfort ( like I can feel the ovaries producing like a million Crocodile eggs, am I going mad? LOL).
Also thinking that they probably do not do EC on weekends, so if scan on day 11 confirm I am good to go, they would probably be unable to schedule trigger for that night and have to wait for Saturday and EC on Monday (day 14 in the process)? keeping my finger crossed I am not overstimulated by then.

@RiverRiot @Etonmess20 Yes, they gave me predicted ones back in May when they ordered meds and scheduled me in. Although I think it was worse that way somehow. Between first appointment/consultation for funding back in November and when they gave me the appointment in May, I Have spoken with loads of staff that gave me so many different versions of information. For hem may not be much, but it is truly awful when someone says "2 weeks" and you are counting on it. Sorry you are in this position.

On 22.06 for my first scan, a nurse (she is super lovely) explained me quickly how to mix Menopur, but she also suggested to watch videos from the meds company and gave me an A3 with instructions. I wanted to take a video of what she was doing when she was mixing, but unfortunately no videos can be taken inside. I was so anxious I was gonna forget, but at the end I got it.

@Etonmess20 Absolutely!

@morganablue Are you having a freeze all?
I felt like I was dragging two sacks of rocks around by the end. This probably sounds mental but in my mind I could almost feel the follicles rubbing against each other inside the ovaries. Not painful really, just an odd sensation. And I only had 9 days of stims in the end. But then I am super short so maybe the drugs worked a bit quicker on me? 🤔

I believe they are doing weekend appointments nowadays to help catch up with the backlog but if you’re already super uncomfortable I’d make contact with the nurses just to say “This is how I’m feeling and I’m worried day 11 will be too late”. What was your AFC at your baseline btw?

@Etonmess20 exactly, why say it if they can't deliver. They are well aware our lives revolve around this basically. It is extremely hard to plan around. And now they have clearly switched to just not even responding to emails. I'm still holding out hope for July but it is fading very quickly.

Don't want to get grumpy as I know they're busy but it is a tough situation as we all know.

@RiverRiot That is exactly how I feel! I can feel them rubbing and the rock dragging is so on point! So this is my first cycle and supposed to be a fresh cycle. I am 5.4" and man I feel like I am already exploding. Also I lost weight from last time they weighed me in March (7 kilos) but they never weighed me since. My AFC back in March was good, and it was not even best time to take it as I was on day 1.

I am so temped to email to tell them exactly that, but I have been so worried I may jeopardise treatment somehow if I force them to change schedule (silly feeling which I cannot shake off, but I have no absolute rational reasons to explain). I may just do that now and hope they can scan me on day 10. Thank you for that @RiverRiot!

@Vparisi my July cycle is due to start next week so I'm holding out even less hope than you!
I'm just so frustrated - don't say "couple", couple means two!!!! I'm sure they'll ignore my email just like they ignored yours 😒
I get they're busy but they make themselves busier giving out misleading information.

@RiverRiot couldn't agree more with you about the frustrations at guys with comms but how lovely they are all when you're there. I smuggled Dh into the waiting room for EC, no one moved him on.
And on partners in general, we have our viability scan in two weeks and Dh can come but has to show a negative Covid test upon arrival so they might do that with EC's in July?
My ET was on a Sunday and one of my scans a Saturday so it's 7 days a week service.
@morganablue welcome, good to have another join us. I'm further along than the others as I got my bfp but still here to help others with what comes next when it comes to guys.

@becarefuloutthere OMD Congrats! That is so exciting! Thanks for reassuring on Sat/Sun service, this makes sense. G is coming for EC to give his sample, so guessing he can stay in waiting room (I will try!)

Thanks all! I’m pleased it’s done but I don’t actually believe it’s done, if you know what I mean. Going back to the doctors today to try to confirm and pick up my test forms for screening. My private clinic needed me to have all the viral screening done etc and I asked the GP.

@RiverRiot the urologist went on holiday for a month 🥴. So no progress, just waiting for the bugger to get back so we can book a results appointment.

@Vparisi it’s good progress yeah, I’m fretting about the timing of it all. I’m already 38, another six months might make me totally lose the plot over here 😩. Which is why I’m thinking about doing something private in the meantime. I would try Letrozole while we wait but I’m not sure his sperm will be up to it. Hopefully the results won’t be terrible but I don’t have much hope, his motility keeps getting worse (and honestly I think age is actually more of a factor for him. Me too, but I’m placing lots of hope in the old egg reserve).

If I can confirm the letter is sent this week I will follow up with an email.

Where are you all at now? Just waiting to start if you haven’t?

Oh and I also had my hycosy, not sure I mentioned that, and they found a blockage (not in the tubes) and flushed it out. Hoping that helps.

@morganablue thanks 😊 I'm 6 weeks today! Yeah your partner can stay. They'll be waiting for you when they wheel you back in after the procedure.
@thislittlebird so pleased all is moving forward for you at long last! Defo plough ahead with the private round first, it's good that they'll except the nhs tests, my clinic said they would as well but didn't end up using private in the end. Can totally understand not wanting to wait to find out tho. So much luck to you!! X

@Vparisi @HereToLearnAndShare so I am basically furious....why tell me a couple of weeks 3 weeks ago! 🤬 I'm tempted to reply but what's the point, I've probably already been added to some difficult patient list somewhere

@Etonmess20 omg why do they need to be so snarky with the whole 'as previously mentioned.' If you're gonna go with that then you need to be consistent with what you are saying. If you want to reply saying you were told a couple of weeks 3 weeks ago I think that is 100% reasonable. We wouldn't need to annoy them if there was clear communication. I would expect some compassion.

@thislittlebird I would definitely try private if you can as as you can see the waiting times past appointment are a nightmare...just make sure on your policy you're allowed to do a private round as it differs by CGC. Try and stay positive, you are making positive steps at least!

@becarefuloutthere congrats on 6 weeks! That is so exciting.

@Vparisi I was so tempted to go back & say "as YOU previously mentioned". I'd left their previous email on the thread for that reason. I mean their email basically says f**k off doesn't it? If they hadn't said a couple of weeks I wouldn't be emailing now 🤷🏼‍♀️