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!

@Etonmess20 I hate that we might have to pay vast amounts for any of this when all my friends just got families for free but here we are.

We've been doing some reading and listening to podcasts and I've spoken to someone on here who knows some stuff, so we're definitely going to look into his issues while we wait.

Could you just ask them to start after your trip? Tell them you're available from x date? I don't know how it works.

@RiverRiot no, his motility was 14% and then 9% a few weeks ago, so we're in iffy motility territory. He has a high count, but with 124 million sperm after two days abstinence he only has 9% of those swimming the right way, and then only 44% of those are alive . It's a nightmare tbh.

@notyetamumbuttrying great news you're starting soon! Going to send my email to PALS moaning about the speed for us soon.

@thislittlebird Oh man, I’m sorry, that must be a real blow! I suppose the good news is that your funding should be straight forward and quick. Then hopefully they can pick out some good ones with ICSI. 🤞🏼

When’s your appointment? Like others, I have found that sometimes you need to be a bit of a pest so don’t hesitate to give them a ring if you think they’re dragging their heels. x

@thislittlebird it's baffling enough isn't it? I spent so long being bitter about stuff like that but as cheesy as it sounds I'm really trying my best to be positive at the moment. Feel like I just get myself into some shit sad hole otherwise

If I'm honest I think the way forward is to probably change it to something later this year, it's a pain but even if the dates don't clash I can't exactly go & enjoy cocktails really & I feel like if I'm not going fully in it's just a waste!

How is everyone today? Hope you're all enjoying the sun

@RiverRiot thanks mate, raring to go now! 🏃🏾‍♀️ good on your dp, mines just had two pints 🤦🏾‍♀️ tbf I had one which is nuts of me considering this all starts next month. I've told him that's it for us now and we're going healthy food shopping tomorrow. No carbs at dinner and earlier dinners too. No chocolate, crisps or sweet treats in the eves either. I'm going to give myself a few more days to get over the lap and start running again. If we're gonna make a proper go of this, we need to do it properly 💪🏾 no contraceptions for me beforehand and I'm doing long protocol. Start my down regs day 17 rather than 21 due to having shorter cycles. She said we could still ttc naturally which scares me a bit as I'm injecting hormones that stop my ovaries from working but I guess by that point any potential implantation would be far from my ovaries by then 
@thislittlebird thanks, did you get the email sent?
@Etonmess20 I'm glad you're feeling positive about things, better than feeling down isn't it!

@RiverRiot I really hope they can . I think we're going to see a private urologist/andrologist while we wait for it all anyway because no one in the NHS is very bothered by his results it seems, I don't want to "waste" cycles if I can avoid it when we get there and I'm quote worried about his poor quality swimmers leading to no fertilisation or implantation. It's a nightmare.

My appointment is on May 17. I have no idea if it will be in person or on the phone, what was yours like? I'm so frustrated because I started this process last July and I'm so behind everyone else who started around then because they gave us the wrong results. I just wish they'd sped things up a bit, but it's been such a long wait.

@Etonmess20 yeah, I hear ya. I'm seeing everyone on here in threads I'm in make progress (bfps/appointments/starting IVF) and I'm still sat here waiting. It feels really crap right now.

@notyetamumbuttrying no not yet, I keep thinking about it and don't know where to start. I need to get on and do it. I rang the secretary the week before last to put his SA on file and my private tests and they never called me back when I left a message. I guess I could mention that too.

@thislittlebird
I completely feel your frustration we have paperwork from guys saying we would start our ivf cycle in November 2019 aaaand we’re only getting started now. In the time in-between I had sent countless emails, a ridiculous amount of mostly unanswered phone calls and went in in person numerous times when they told me ‘write it on a post it note’ and then nothing. My GP chased them on numerous occasions and the only thing that got things moving was when I put all of this in an email and stated that I knew people (you guys) that had been referred in 2020 and were further ahead in the process than us. We were referred in 2018. I CC’d in the complaints department and the head of the ACU called me straight away begging me not to make a complaint and pushed us through really quick. I said to him I think it’s so wrong that people have to kick up a stink to be seen and people that are nice and just wait their turn like we did just get ignored. I can’t complain now as they have really accommodating and pushed us through but had I not have sent that email we’d still be waiting. I completely understand how you feel xxxx

@GJW2018 that's interesting, who did you complain to/email?

I've just sat here and written my PALS letter but not sure if I should CC anyone else.

Seriously though!!!!! ugh!!!! I'm just sat here being nice and should totally have moaned more when I got my May referral through originally.

I’m just reading your message again @GJW2018 and I’m just baffled as to how so much time passed after your referral, that’s absolutely nuts

@thislittlebird I know it was so long and getting zero response was so disheartening. Felt like banging my head against a brick wall. I mean there was a global pandemic in the mix and I think the clinic did close in the first lockdown. I had to get my GP to refer my again just to get them to take notice and even then they sent me to endocrinology etc. We’ve honestly had a nightmare time with them. Kept waiting for these appointments. Like we were building up for this August appointment which they said was going to be our initial appointment to start IVF and it was an endocrinologist who started the call with ‘what can I help you with?’. Every person I spoke to I had to re explain our story to, there was nothing in our notes so I’d have to email the original letters saying when we were to start etc. It was honestly a nightmare and so stressful. Then we were gearing up for our initial appointment on 1st Feb and it got cancelled because of Covid just felt so hopeless. But all said and done my meds are being delivered Friday and we start the following week so 🤞🏻 The ridiculous delay was worth the wait! Xx

@GJW2018 OMG I’m fuming for you! I can’t believe that! I’m so pleased things are moving forward now.

@thislittlebird I don’t want to scare you but my initial experience with them wasn’t good either. We had all our testing in June/July last year and referred Aug. 1st appointment was in Dec by phone because of Covid and it was a bit of a disaster. The Dr was pretty blunt and I was left thinking I was running out of eggs. I had a failed HSG and it was only through a separate but related issue with my GP that I found out through them that Guys had decided to send me on my merry way for another six months - without telling me! I was livid.
I also wrote a complaint to the ACU and cc’d in the complaints department. I had a phone call less than 20mins later offering me a new appointment that week. Turns out I’m not running out of eggs so had spent two months crying nearly everyday for nothing.

Later, like GJW, I also questioned why others had got their funding before me despite having appointments after me and was told it was to do with when you were referred/had your first appointment which was total BS. But funnily enough my funding came through about a week after that question.

Now the ball is rolling everyone seems knowledgable and very nice but f*#k me it felt like a bit of a battle to get there. Nothing compared to GJW though, of course. I’m so pleased it’s not that way for everyone though so you may be pleasantly surprised.

I know you’re writing to PALS but if you have an issue with you GP have you tried writing a formal complaint to the practice manager? I’m not sure if it would speed thing up but they should know they’ve cost you months and months because their incompetence.

Good luck with your urologist and fingers crossed once you get your appointment on the 17th it will be quick for you from there. 🤞🏼

Just so you all don’t think I’m some kind of battle axe, I’m really not normally this pushy at all but 2.5 years (now 3) of not being able to have kids and not knowing why pushed me over the edge a bit! 😂
Also apologies for yet another essay! 🙈

@notyetamumbuttrying Well done on the healthy eating plan! If it makes you feel any better it was such a beautiful day yesterday I allowed myself a G&T because ‘thats only one unit’ 😅🙈.

@thislittlebird are you at guy's hospital on the 17th then? I'm going for my scan then so might see you! (Not that I'd recognise you 😂) Hope you get a callback soon!
@RiverRiot foods been ordered and coming tomorrow, very ready to start! That does make me feel better actually 😅
I'm glad you're finally getting started now too, it's horrendous what some of you have gone through ♥️

@notyetamumbuttrying noooo I’m not even that far along 😭😭😭. I’m going to the QE, which I think you did in...February or something, right?

@RiverRiot why didn’t they tell you they’d kicked you into the long grass for six months?!!!!! That’s such a mess. Why did they say you were running out of eggs???

I am anticipating all sorts of nonsense which is why I have preemptively sent my email to PALS flagging my concerns. Hopefully they can explain the process and timescale to me somewhat, I have no idea if they will though.

The reason I haven’t contacted my GP is because they’re utter dogsh*t tbh. I don’t see the point, they’ll just send me a stupid email or letter justifying their nonsense.

I’ve emailed the urologist secretary and hoping she’ll come back to me early next week so we can book in soon.

I’ve started calorie counting again and the exercise should really start tomorrow. Or restart. I need to lose a stone and I’m very bad at being disciplined but i think it would help us both to shift a few excess pounds and eat more healthily.

@thislittlebird yeah that's right! Well remembered, although I think it's the queen Mary. The one in woolwich. We first went to guys in feb. Only went to the woolwich hospital for my first set of bloods bk in august last year.
I need to lose a stone and a half so also starting on the healthy eating and exercise from tomorrow. Best of luck 🤞🏾

@notyetamumbuttrying oh that’s weird. It’s the Queen Elizabeth Woolwich, Queen Mary is in Sidcup. I’ve had some tests there already but I wonder why you went straight to guys? This stresses me out a lot. I don’t understand why I can’t get as far as Guys or wherever and have to go to Woolwich again. There’s nothing wrong with it per se but I feel like it’ll be another 3 months before a Guys appointment or wherever. Why do I have to go to the local hospital? I’m at a loss.

@thislittlebird you're right then, sorry! I shouldn't listen to Dh when I ask him to confirm something 😂 remember we got our fertility referral because dh had such poor sperm. You're unexplained right? Has your referral actually gone through?

@notyetamumbuttrying no, I think we’re double explained 😭. I have low progesterone slash uncertain ovulation and he has very low motility. That counts as explained, right?

PALS replied abs said they’ve passed my letter onto gynaecology at QE. 😔

@thislittlebird yeah I'd say that's explained. I wonder if you can push from the male side. The gp referred Dh to urology and after a couple of months and tests with them (bloods and scan) we got the fertility referral through for guys. The letter came early December and the first appointment was 22nd feb.
Great they've replied already though! Should hopefully speed everything up! 🤞🏾

@notyetamumbuttrying so basically we’re at your December stage assuming this gynaecology appointment is your urology appointment which is.....very depressing. I can’t wait another five or six months, I’m 38 next month and I need to get going. If they let me do two private rounds before I forfeit the nhs round I’ll just get on with those, I think. Happy to wait three more while we see the private urologist and get some tests done but I can’t lose another six or more. They’ve lost me six months already.

Or maybe your October or November stage? Not sure when you had urology appointment

@thislittlebird urology was October (bloods and scan) and November (follow up appointment) and then the referral came in December. But then things are moving differently now. We went into lockdown in nov and then tier 4 then lockdown again, so as long as all that doesn't happen again then surely it'll be quicker. Best of luck 🤞🏾

@notyetamumbuttrying thanks. Yeah so we’re at your October stage. It’s just...so bad and I can’t wait all those months for IVF because of my age. It’s extra nuts really when we’re in the same CCG but at least I know your timescale and I can use that as evidence when I argue for them to get a move on.

@thislittlebird I understand that. Hope you get some good movement soon! ♥️

Hi all, hope you are doing well . I was wondering if anyone had had any appointments where the doctor brought up getting the vaccine? Unfortunately I'm still a long way from being in the eligible age range but would ideally like it ASAP, and am just wondering if I will be able to have it during treatment if I get the call. From what I am reading there seems to no longer be any pregnancy concerns etc?

@Vparisi It hasn't been discussed with me yet, nor have I brought it up. I imagine it might get mentioned at my first scan mid May. Will keep you posted!