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!

Thanks @RiverRiot! I now need to ask about suspected endo too as I'm pretty sure I have that! Run up to periods is so painful and my period itself. I get pain during sex a bit and afterwards! 😩 literally hate being a woman sometimes!
Ooh whereabouts in London are you? I fall under the Lewisham ccg and I thought I read you forfeit it. Really hoping you're that area too and I read it wrong! 😬
Pleased results were all good, that's great! Getting there now 😘
@Vparisi glad it went well! That is a long wait just for funding, they seem to be increasing and increasing! 
@Etonmess20 sorry to hear about your mum, that must be tough!

@PeigiSu is that appointment to start treatment? So your funding is already approved?

@notyetamumbuttrying I think it works slightly differently for PGD so our funding was approved in Wales but there’s no service in Wales so they pay Guys. I think they said they release the money for the initial appointments and then if everything’s ok then they release the rest so I think the answer is yes it’s approved but I’m a little confused. We’ve seen the genetics team but not the ACU team so I guess if they felt there was some reason we shouldn’t go ahead then it wouldn’t be released.

I think they were saying to expect to have a scan and semen analysis on the day of the appointment and expect to start the pill and have a date booked for egg retrieval that might be a bit of a way away. I guess they try and not drag us down too often as it’s so far.

@PeigiSu ah ok, see what you mean now. Great things are moving forward for you both

@Etonmess20 Oh I’m sorry to hear about your mum! I hope she and you are ok and she gets better soon.

@notyetamumbuttrying Oh man that’s rubbish. I know a few ladies with it and it sounds horrible! Hope you get the answers you need soon.

I’m SW but weirdly fall into the SE/Lewisham CCG too. Here’s what I found online, look to page 14/15. I just wanted Guys to confirm I was reading this right. Turns out I was so looks like you qualify for two rounds too! 🥳

www.lewishamccg.nhs.uk/about-us/Who-we-are/Governing%20Body%20papers/Enc%2020.1%20SE%20London%20Treatment%20Access%20Policy.pdf

Happy Friday all!

@RiverRiot thank you, she said getting pregnant makes the symptoms go away so I really need that to happen 😆
Omg I don't know how I missed that!! I see it, you're right, whoppee!! That's such good news in a sea of shit 😂 thank you for pointing that out to me 😊
Happy Friday to you too! X

@RiverRiot Read your message and immediately tried to find the same document for Kent and Medway CCG as i hadn’t aren’t that one before - i thought they would only fund for one cycle - to be honest i just assumed but the document says 2 cycles and you can have one self funded too !

For everyone under Kent and Medway CCG @Etonmess20 i’ve added the link below
www.kentandmedwayccg.nhs.uk/application/files/3615/9741/8783/FOI.20.KAM005_-_IVF_policy_appendix_A.pdf

I also got an email saying my funding had been sent off for approval but wait is 3-4 months

Have a great weekend ladies !

Thanks for all your lovely messages & well wishes for my mum ❤️ much appreciated!

@Welshpea am I right in thinking the CCG related to your GP surgery location? My GP surgery is in an SE postcode but my house is in a DA postcode, all very confusing!!

@Welshpea That’s great news about the two rounds! And at least you’re getting on the waiting list now so fingers crossed things go smoothly for you.

@notyetamumbuttrying You’re welcome, happy to shed a teeny bit of joy on a Friday! Ha.

@Etonmess20 Ah I didn’t know about that, that’s confusing! Fingers crossed it’s your home though and you get the extra round. 🤞🏼
Hope your mum is doing better too! x

@RiverRiot it was very well received!! Do you happen to know if two rounds is two fresh transfers or is a round one fresh and whatever remaining frozen if the fresh doesn't work?

[quote notyetamumbuttrying]@RiverRiot it was very well received!! Do you happen to know if two rounds is two fresh transfers or is a round one fresh and whatever remaining frozen if the fresh doesn't work? [/quote]
@RiverRiot and @notyetamumbuttrying I think the doc you linked is the 2015 one. Just FYI this one is the more recent doc :) www.lewishamccg.nhs.uk/news-publications/Documents/SEL%20Treatment%20Access%20Policy%2020%20Feb%202019.pdf

but yes on page 33 it still says 1 full cycle which is one fresh + frozen.

Eligible Couples will be offered:
o 3 cycles of IUI
and / or
o 1 full cycle of IVF +/- ICS

Definition of one full cycle (NICE, CG156, 2013):
The CCGs will fund up to 2 frozen embryos per patient for 2 years. This will include the cost of freezing
and storage. For unsuccessful patients, i.e. those not resulting in a live birth, the CCG will also fund
the transfer of these frozen embryos (maximum 2 frozen embryo transfers per patient). The age of
mother at the time that the embryos are frozen is required to be within the age limits set out in the
policy. This does not apply to the age at transfer.
The CCGs will fund the freezing and storage of up to two embryos per patient for two years. Where
treatment does not result in a live birth, the CCG will also fund the transfer of a maximum of two frozen
embryos. The age of the woman at the time that the embryos are frozen should be within the age limits
set out in the policy. This does not apply to the age at transfer.
A full cycle of IVF treatment, with or without intracytoplasmic sperm injection (ICSI), should comprise 1
episode of ovarian stimulation and the transfer of any resultant fresh and frozen embryo(s).

Thanks @Vparisi but my query was around the point highlighted in the pic. They say "attempts" it would be good to know what they mean by attempts as they don't stipulate rounds or transfers in this part. X

[quote notyetamumbuttrying]@RiverRiot it was very well received!! Do you happen to know if two rounds is two fresh transfers or is a round one fresh and whatever remaining frozen if the fresh doesn't work? [/quote]
@notyetamumbuttrying I was thinking about that too over the weekend.
But what I think @Vparisi is saying is one private cycle would equate to 1 stimulation and egg retrieval and then any resultant fresh and/or frozen embryo transfers. Or at least 1 fresh and 2 frozen per cycle anyway. Is that right Vparisi?

Am I also right in thinking that if you’re lucky enough to have more than two embryos to freeze on your NHS cycle you can pay for the storage of the other/s?

Not long had a VM from guys hospital and it was the scheduling team...I think it's going to be a cancellation isn't it 😣 means I'll have to do the amh and SA privately then as I have my appointment with the private clinic in March and I need all tests results before then, damn it! I really thought I'd be lucky and sneak in there without it being cancelled. Ah well 😒
Hope everyone else is having luck with guys?!

It wasn't to cancel but to offer a further appointment next weds with just me virtually. Odd but I'll take it!

That’s good news @notyetamumbuttrying! Hopefully they’re just trying to be thorough. 🤞🏼

I’ve had some slightly annoying communication issues regarding blood tests but Hycosy went well thankfully. Afterwards the doctor went through the referral criteria again which was helpful. I had thought that a private cycle would be similar to the NHS terms regarding what a ‘cycle’ actually means. But apparently one stimulation/egg collection/fresh transfer would count as one cycle then a further frozen transfer would count as a second which obviously isn’t ideal but better than nothing I suppose...

I have to say though that as frustrated as I was with the phone consultation I had, all the doctors and nurses have been really lovely in person which makes things so much easier.

Oh and good luck next Weds @notyetamumbuttrying! x

@RiverRiot glad the hycosy went well. Is it results there and then? Did you get bloods done or are they still to come? I'm glad the staff are nice in person, that's good to know. Thanks for the good luck!

@notyetamumbuttrying Yep they give you the results straight away. I’ve had AMH so just repeat day 3 to go but I think that’s to double check my FSH. Let us know how the online appointment goes. x

@RiverRiot yes will do! Hope your fsh is still good. Did you get amh at guys? They told me I'd get the result same day but the private clinic told me that nhs take two weeks?

@notyetamumbuttrying Guys did the AMH. I had it done on the Friday then got the results on the Weds/Thurs. I think they’re doing the FSH again because it doesn’t correspond with my AMH and AFC, which were both good but the FSH was elevated. As far as I know it’s not that common, although does happen, so hoping it’s lower next time. 🤞🏼

@RiverRiot ooh didn't take too long then, that's good to know! Interesting it didn't correspond and good they're doing it again! I'm glad they're being thorough. Here's hoping it's lower 🤞🏾x

@notyetamumbuttrying

It wasn't to cancel but to offer a further appointment next weds with just me virtually. Odd but I'll take it!

Interesting - I got a voicemail same day as you asking for extra info for funding as she said they were assessing it now (1 week after my initial consult so seemed quick!). GL with your appointment this week! :)

@Vparisi thank you! Dh got a call today and he's got another appointment next week too! But he has to go in...they couldn't say whether the 22nd feb appointment was cancelled or not tho so I'll ask again on weds. Great that you've been contacted too, seems like things are moving again then!

Had my call today and it was with the reproductive unit. She said it was 6 months for funding to be approved and then 1-2 months to start so not quite as bad as first thought. I'm gonna go for the afc scan privately as I'd like to know how my eggs are doing sooner rather than later and then go from there with what we'll do. Hoping our appointment on Monday is still fruitful, as that one is with the assisted conception unit and will be for amh and the repeat SA.
Hope everyone's well?! X