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!

@thislittlebird it is tiring isn't it? Not only that but obviously the longer this goes on the more time is wasted. Really hope you can get somewhere with these letters - even if you asked the GP for a referral straight to Darent Valley rather than via Queen Mary's as they were really good for me (I do have details for the consultants secretary I saw there & can dig that out if that would help in any way)

@Etonmess20 yeah, very. The other thing is my age, it’s so upsetting that they dismissed me when a) we’re not unexplained and b) I’ll be nearly 40 by the time 3 years is up. I feel like they’ve wasted a chunk of what is crucial egg quality years for me.

Thanks! The gynaecologist said I can be referred by the GP to an ACU so I’m going to try. Was DV a gynaecology dept or a fertility department? How long did it take to get to guys from there?

@Etonmess20 @GJW2018 Yeah I think it’ll be around 3 weeks from phone call to egg collection! Bonkers.

GJW2018 Bloody hell that sounds tough! Sorry if this is triggering for anyone but I think part of the reason my friend wanted to warn me is because this is the first one her sister is actually keeping. I’m in NO way anti abortion but two of said sister’s have been pretty late (i.e. well after the 12wk mark) so someone who’s so cavalier about it all gets my back up really. Sorry if that sounds bitter.

@thislittlebird It’s so appalling you’re having to spend so much money on something you’re entitled to. I wish there was a way you could be reimbursed for it all!
I suppose you could ask your GP to organise the hycosy but that may take ages and comes with its own issues in itself I guess.
Did the Dr at Lister prescribe you any progesterone btw?

@RiverRiot ah thank you 😊 you're right! All in the name of science indeed 😏
Yay to trigger and EC, it's all go from now hun! So much luck to you! Great numbers too 👍🏾
@thislittlebird agreed, I'm pleased given everything overall! Good luck booking the hycosy x
@GJW2018 feel ok, although bit of a sore throat which I could do without! Thanks for the positive vibes ☺️
Omg your friendship group, infuriating 😣 mine are all finished having babies, bar one. Most of their kids are all over 5 now so I'm very behind them all!

@Vparisi I dont have news yet... Still waiting for he call. I will keep you all posted
@Etonmess20 I share the same feelings. I can't do any plans, feels like everything in my life is suspended until I have some clarity on the timeline. If your chase is successful, I will start flooding them with emails
@RiverRiot it really feels so fast even looking from a side! Thats great. You are going for frozen transfer right?

@thislittlebird DV was a gynae dept but I had my clomid managed there as well as a HyCoSy, I probably spent just less than a year under their care but that covered all treatment (my clomid starting as we went into 1st lockdown then being referred just before Xmas so may well be quicker usually!)
Surely your GP should see letters from 2 independent consultants & refer you straight to an ACU if they're able to, keeping everything crossed for you

@RiverRiot bet it feels like a whirlwind doesn't it?! Btw you don't at all sound bitter, it (understandably) makes you see things so differently when you're in our position

@HereToLearnAndShare don't blame you 😂 really hoping they at least ask for my cycle dates or something! Will let you know as soon as I hear. When was your consultation again? Wasn't much before mine & @Vparisi on 4th May was it?

@Etonmess20 our appointment was on the 26th of Apr and they added us on the waiting list on 30 Apr

@notyetamumbuttrying must have been very sad to hear but statistically you really still did amazingly and it is a great number!

@RiverRiot super exciting about the trigger shot!! It has really been a whirlwind for you. Crossing my fingers for the quantity and quality. Also I can totally relate to a lot that story and a bit of a mix of @GJW2018 's. My best friend firmly does not want kids even though her husband begs her and tried to get her tubes tied but her doctor said she was too young. She's been pregnant twice on the pill in the last 3 years and didn't give either abortion a second thought. It is her body and her life and I support every women's right to do what she feels is right, but it definitely just makes it seem like there is no logic in life doesn't it. You definitely don't sound bitter. It is all just unfair.

Thanks @HereToLearnAndShare , I will be excited for when you get your call first and foremostly for you but also because mine and @Etonmess20 's will be soon after hopefully according to the dates.

@thislittlebird honestly so frustrating...I know it feels hopeless but really keep on pushing even if you feel annoying...eventually I really have faith you will get there x

@Vparisi yeah you're right! 😊 how are you getting on? X
Oh and ttc and infertility is VERY unfair!!

Thank you everyone for the support and well wishes, it really means a lot to me! 🥰
And yes definitely feels like a whirlwind, I was saying to the nurse today that it still doesn’t feel real!

@Vparisi Yes it’s exactly that, every woman is absolutely entitled to do what’s best for her but the randomness of life is a bugger sometimes. I’m sorry you had to deal with that happening to such a close friend though.

@HereToLearnAndShare The plan is for fresh this cycle but I suppose it could change depending on how things go.
It’s bizarre this IVF language sometimes isn’t it; fresh vs frozen, like we’re buying a bag of peas. Very tiny peas! 😂

Really hoping it’s soon for the rest of you now, will be so great if you’re all around the same time too! 🤞🏼

@Etonmess20 thanks, I wish they’d tried clomid for us months and months ago. How was your hycosy? Mine is next Tuesday, I’m nervous.

@RiverRiot are you on short protocol? It really is all very swift.

Lister sent me docs on ivf protocol and hycosy today. I need to read them all. Husband had a scan and has a small (I think) varicocele. More tests later this week. I’m hoping they can do something that isn’t just surgery because we haven’t budgeted for private varicocele surgery. Will have to assess best course of action and whether to do the surgery or not once the rest of the results are in.

I also chased up PALS. They seemed to think me asking if a formal complaint was standard procedure as me retracting the complaint I’d literally just made. All very odd. Anyway, it’s been revived I guess, and a case manager may actually call me this time.

Part of me feels bad complaining about the old gynaecologist. I can’t help it, I think it’s her age bringing out the guilty part of me (maybe because I was raised by my nan 🤷‍♀️). But she’s blocking us from the treatment we’re entitled to so I need to shake the guilt.

@thislittlebird yeah I mean there's plenty of people it does work for, obviously made no difference for us but was definitely onboard when we tried it.
My HyCoSy was absolutely fine, basically a smear test with a little cramping at points for me. They suggested you take paracetamol before but I forgot to 😂 & I also drove myself home from DV after!
Definitely shake the guilt, it isn't personal as you say but at the end of the day she is stopping you from accessing treatment you're entitled to. I'm hoping that they do actually call you this time!!

@Etonmess20 is worked for my sister so I always had hope it might for me, but swimmer issues might put paid to that. Did you have any ovulation problems at all?

I’ll be too anxious about the hycosy and I know I’ll dose myself up. Glad to hear yours was ok though. I know I need to shake the guilt, let’s hope someone calls and tries to sort it!

@thislittlebird Yeah I guess they don’t call it short protocol for nothing! 😳

Honestly don’t feel guilty. If she’s too old to be doing her job properly then she needs to be either updated on the latest guidelines or retire for the good of her patients!

Hope the hycosy and your DHs tests go well.

@RiverRiot this is something I feel dumb asking because I googled it before and it didn’t seem clear to me. Do they down reg for short protocol?

Thanks, I need to stop worrying about her. I looked varicocele embolisation up for DH and they do that at Guys (he had a scan today). If they could let us be seen there that would be helpful.

@thislittlebird no I don't have any ovulation issues at all but they hoped the clomid would cause "super ovulation" (think that's what they call it). Anyway, I had 3 months of monitoring & it worked as expected but nothing happened.

@Etonmess20 I have heard people say it’s less effective if ovulation is already present? Not sure why, I guess another part of the process is the main obstacle.

@thislittlebird Nope. No down regging. You start stims day 2-4 of your cycle and most women are on them for around 10-14 days and then it’s egg collection 36 hours after the trigger. So it’s kind of like a normal cycle time-wise.

Did you do the self referral for Guys?

@RiverRiot no, I haven’t but maybe I’ll just go ahead and do it. I was waiting for PALS to call me but seems they didn’t think I wanted a call. God, this whole process has been just...incredibly painful.

I’m waiting for the urology results in a few weeks but I really hope they don’t advise private surgery. We don’t have that much money, we have enough for a few rounds of ivf but I don’t want to lose any of those rounds to a surgery 😩. This is such a mess. I’d be tempted to try one without having had the surgery I think, I dunno.

You know I’m really relieved it’s more like a normal cycle because my mum had early ish menopause and my slightly wonky cycles make me me worry I’m very early peri menopausal. The prospect of down regging worried me a bit, fingers crossed I can avoid that since I’ll need short.

I’m so keen to get going but all this male factor stuff is going to slow things down.

@thislittlebird To be honest I would crack on and do the self referral. As with anything on the NHS you’ll be on a waiting list anyway so will likely have all your results back before your appointment and then Guys can pick up from there.

I think the PALS thing is a separate issue in a way as a) I’m assuming you wouldn’t want to go back to that hospital even if you got a new Dr? And b) It sounds like that hospital is only a stop gap to a proper ACU so you will eventually end up at Guys, or wherever, anyway.

Your other bloods (not the progesterone) should give you an indication of peri-menopause or not and if that is the case then, as you’ve said yourself, there’s no time to lose. I’m really hoping not though.

@thislittlebird who knows, looking back it was a waste of 6 months but my monitoring suggested everything worked as it was supposed to 🤷🏼‍♀️ never thought I'd be in this position tbh, everytime I used to go for monitoring they'd be like "it'll happen in the next couple of cycles" so really crap it didn't work but such is life eh?

@RiverRiot they keep saying my bloods are fine (not that they even did a day 3, I did a private AFC and AMH instead) and have been saying that to me for years but I really don’t trust them, especially after all this. They only seem concerned by egg reserve, hormones don’t seem such an issue. I will raise this with the Lister doctor when I next speak to her but I guess there’s not much they can do either, other than push ahead with ivf. As I say, for my own peace of mind I need to just crack on but male factor is holding us back right now.

I just checked the form and it’s definitely for self funding and says I need a GP so once I get my letters I’ll try to get my new one to sign it off.

@Etonmess20 are you technically unexplained then? It’s all very hit and miss, which makes it very stressful. Like you say they clearly expected it to work and it didn’t. I’m tempted not to bother with ovulation induction because of this uncertainty (if it’s an option).

@thislittlebird yeah fully unexplained, everything for both of us has come back average/better than average so there's nothing been identified at all & absolutely no reason we've never had even a sniff of a BFP. I guess if you're self funded you could definitely say no but unsure whether NHS funded may want you to give it a try at least for a couple of months (if it's suitable for you of course).

@Etonmess20 did you end up getting a response by any chance? I booked my Vax last night as soon as it opened for over 25s and now have it booked in at the hospital there now on Friday funnily enough. Wish I could pop my head up to the ACU and ask! Haha