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 yeah so my boss knows Dh as she was my boss at another company I used to work at and so did dh. She was both our boss hence her comment on what the baby will look like.
She may well understand indeed or maybe didn't want any, you'll probably find she tells you to put you at ease.
Yeah it is odd telling them online but you'll manage it. Let us know.
He defo should tell him as they do need ppl to talk to too. I've told Dh he can say we're having trouble conceiving but he's decided himself he doesn't want them to know about ivf. He's got another group of friends who are just a trio so he'll prob tell those guys, but only because they have drinks booked in for a couple of weeks and Dh will not be going on mad one and wrecking all his sperm before EC 😂 so he'll need to tell them why.

Erm the squeal helped 💯 % 😂

@GJW2018 yay sounds great and all super quick! Wish mine was short protocol but needs must!

@Vparisi yep, totally agree! We're in strange world with all this infertility. It's so rife now, I do think lifestyles and diet play a part in it. Or maybe it feels more rife as we have more advanced techniques to deal with it 🤷🏾‍♀️

@Vparisi it was a yes to getting my hair done! And the dentist which I’ve got booked for next week ... all the important questions. I felt suuuuuper anxious a couple of days before but feel so at ease now. Doesn’t feel as massive as I’d made it out to be in my head. I think the before but is worse. I feel much better about injections as well now they really put you at ease and make it seem like nothing.
Completely agree with you all on the pregnancy announcements and loneliness, I’ve had every single friend of mine be pregnant, have babies and some twice over in the time we’ve been trying so can’t really talk to them about any of this as they don’t understand. So grateful to have you all, we’re in this together!

@notyetamumbuttrying she was fine about it tbh, she didn't really have a massive amount to say about it all but I kind of basically said I didn't actually want to tell her but kind of felt I had to 😂 she isn't traditionally friendly if that makes sense, like very little small talk as a rule but she is nice in her own way.
She said she had friends who had IVF so she knows a bit about it but basically said to let her know what I need & when I need it she even offered me to go part time while we're having the treatment done but I declined as that's possibly excessive for a few weeks of treatment😂
Massive weight off my mind actually, I hate being shady about appointments & stuff so feel good to know I can just be honest now.
That's nice that your DP probably will have friends to chat to as well, you forget it's equally hard on them don't you? DP was quite put out that he isn't allowed to most of the appointments cus of Covid & I did think I'd feel rubbish if I was excluded from big parts of the process ☹️

@Etonmess20 ahh so glad it went well and she was understanding, knew she would be! I'm like you, and like to be upfront about reasons for time off. Wow what an offer to say you can go part time! It does seem excessive for a few weeks tho you're right 😂 I'm just thinking of it doesn't work, I'll defo need time off then, but will prob book a few days once I know when transfer will be. Yeah it's such a shame they can't physically support us. They said not until EC to me. My first scan is 17th May which is when next restrictions lift so surely he could come in then?! I might email the nurses for a double check!

@notyetamumbuttrying I'm tempted with a couple of days off for transfer too, but will see nearer the time. Pretty sure we'll still be working from home then as well so at least I can be bloated in my pyjamas in peace 😂
Yeah they said he was allowed to EC & that was it but, like you say if the restrictions are lifting maybe that will make a difference - I expect ours will be after June 21st when literally all of the restrictions are lifted so surely that means partners could be welcome 🤷🏼‍♀️

@Etonmess20 yeah think a couple at transfer and then another couple for testing, to celebrate or commiserate!
Haha yes same with bloated in pjs look! It's just once a week in my office at the mo so went in today for a bit.
Yeah I'd agree, they'd have no reason to deny them by that point.

@notyetamumbuttrying hopefully we'll be able to have DPs at all appointments really soon 🙏🏼

@thislittlebird good luck today, let us know how you get on!

Hey ladies, did my first injection of menopur this evening and after a bit of an air bubble struggle and bending the needle 🤦🏼‍♀️ the actual injection was easy as anything, literally no pain and made me feel like oh, that was an anticlimax! I read somewhere about mentally labelling it as a feeling like you’re putting ‘peace’ ‘love’ or ‘strength’ into your body. I envisaged it as ‘calm’ going in and I do feel like that helped! I did it in my leg as I was scared of my tummy but might give that a go tomorrow. I definitely hyped it up to be a lot worse than it was!
@thislittlebird hope all went well today xx

@Etonmess20 yeah really hope so too!!
@GJW2018 ah well done! It stung me, will try and envisage peace and love going in and hope it makes it better and if that doesn't work, I'll get Dh to have a go. Mines been tummy as I have a podgy one 🙈 so figured it would hurt less. I wonder if you can mix it up each time, as I might try leg too just to see what I prefer. Glad it went well hun xx

Hi all, it didn’t go well today. I’ve posted this already in another thread so @notyetamumbuttrying has heard me say this but it was horrible. She obviously knew we’d complained and acted like she’d done us a favour by “fitting us in”. Then kept saying she didn’t want to hear about our GP.

They weren’t interested, essentially. I was so excited and looking forward to seeing someone who would finally help us. But this old woman gynaecologist was unpleasant as soon as we walked in the room. Skimmed over our results, didn’t ask us a detailed history, didn’t even do as much ask my husband if he smoked.

Told us we’re unexplained so have to be trying for three years. This was despite a progesterone result of 10 and 9% motility. It’s not enough, we don’t quality for help. She didn’t even talk about my progesterone, never offered me clomid or anything. I’m very upset and have been in bed a lot of the day, I will catch up with all your updates properly tomorrow probably.

As a side note there cannot be an ACU at that hospital. No way. I’m so exhausted, and had the pleasure of sitting in a waiting room of heavily pregnant women which was the icing on the cake.

@thislittlebird oh bless you that sounds awful, that woman sounds like such a cow ☹️ definitely take the time to feel crap about today but we're here whenever you're ready to talk about it!
Be kind to yourself & eat all the chocolate....sending lots of love x

@thislittlebird I’m so sorry today was shitty. I completely understand how you feel and in our 3 year journey since referral the amount of shit, unhelpful appointments and frustrated, hopeless tears I’ve cried has been way too much (and I’m not a crier!). Had so many awful appointments and phone calls, feeling like we were getting nowhere and just wanted someone on our side. What was the outcome in terms of action? If they’re not suggesting Clomid etc. They can’t just leave it? I would definitely say write today off and just keep on with the determination and hope, things like this will just make you stronger although I know it doesn’t feel like it at the time xxx

Oh @thislittlebird I am so sorry, that’s just disgusting and I’m absolutely fuming for you!

Do not accept this ridiculous situation. I remember you posting before about your shit GP can you see another Dr at your practice? If you can’t even bear to deal with them then maybe it’s time to change your GP (I did this just over a year ago, it’s quite easy) and demand a referral to a proper ACU from the new one.

In the meantime perhaps get a private consultation with a fertility clinic, not that its fair you have to do that either but at least that can provide you and your GP (old or new) with some more/better information.

Take all the time you need for yourself, I know how devastating this must be but these fuckwits are not the gatekeepers to your life and you will get through this lovely. x

@thislittlebird that is absolutely awful and it absolutely baffles me how these people can have so little compassion for other human beings. I really hope you can get this sorted out somehow as it is so unfair.

@notyetamumbuttrying glad your first injections have gone well!

On telling people about IVF...I think my husband is more worried than me because men are funny about this stuff. For me it’s more of a case of wanting people to know it wasn’t easy and I would like to let people know to spread awareness. He may disagree. My boss knows what we’re planning already because I’ve had so many health issues and appointments the last few months that it’s come up. She’ll let me have as many appointments off as I need.

@GJW2018 glad it went well and you’re excited again! All of my friends have been pregnant too, we’re the last ones. They say 1/7 couples are infertile and guess how many of us are in this group of couples...

@Etonmess20 I’m overweight by BMI too! Need to get back down to a 25 or under BMI and I’m currently 27. Not that private will care which we will likely have to pursue, but I care because I want to improve my fitness before we start.

Thanks for all the nice messages. I’ve not had much chocolate but I did go to IKEA for my pots and ate a lot of apple and rhubarb crumble! This is the first day I’ve felt a bit better since Thursday really.

@gj2018 @RiverRiot @Vparisi
Hoping I’ll start to feel more optimistic soon, it’s really just made me feel super hopeless and I need to get to a place where I feel like we can do this and it’s not fate telling me I shouldn’t go ahead with this etc. Everything goes through your mind. There were very few “actions”. She said I can have a day 3 test because my 21 day tests are pointless (???), a hycosy is pointless and “if I want” I can join a “long waiting list” for a lap. Why???? My issue is low progesterone as shown by the two day 21 tests, his is low motility, why is a lap going to help explain something that you have an answer for? She even said the day 3 likely won’t show high FSH because my AMH is so high. I’m so baffled by this whole experience. Sent me back to my GP, basically . I will speak to the GP who referred me next week and ask how I can be unexplained. She did say I can ask the GP for an ACU referral, so I’m going to do that. Nothing ventured and all that.

For my own sanity I’m going to have to pursue private and nhs simultaneously right now, I can’t wait any more when we know we have issues. It’s just pissing into the wind, especially at our age.

I cannot get my head around not being offered clomid when I’m the sort of person clomid is for. They dish it out to anyone and everyone but not someone who might not be ovulating? Ridiculous.

I did look around for new GPs and just got confused because they all sound bad right now. If she rejects my request I will change.

@thislittlebird
I’d definitely go back to the GP and push for an ACU referral. We had all of this back and forth to queen marys and QE when each time we thought we were going to guys. The ACU at Guys did say that you could self refer and pointed me in the direct of a form and some point. Might be worth calling and asking or there might be a form on their website. We too gave up and pursued private and it was at that point that guys phoned ... always the way! I just don’t understand how doctors can be so unempathetic. I suffer with bad pelvic pain and lots of other endo symptoms and have been pushing for a lap for years. The GP said (over the phone) I can categorically tell you you don’t have endometriosis because you don’t have pain during sex (the only symptom I haven’t got). She refused to refer me for one. If this round doesn’t work I’m definitely going to go private for one as I feel it’s defo an issue. Just so annoying we have to self advocate and do these things when they’re supposed to be the experts and care providers.

@thislittlebird
It’s the top one on this page
www.guysandstthomas.nhs.uk/our-services/acu/useful-information/resources.aspx

@GJW2018 thanks for that. jesus, how ridiculous is that? I am getting offered a lap if I want one for no bloody reason (no pain with sex, barely ever any period pain, only migraines, no heavy periods) and you want one and it’s not offered. Give me strength.

How can we all be in the same area and there’s not a single standard set of tests or checks? It’s so confusing. What is wrong with QE and QM????? Why are they so rubbish?

What would you do if you were me, soak to the GP first and then try self-referral if she won’t do it? I don’t really understand how self-referral works tbh but I just looked at the form quickly and it lists progesterone and abnormal semen analysis as factors.

@thislittlebird I'm so disgusted at the thought of that awful woman forcing you to pay thousands for treatment privately when you're entitled to NHS treatment.
Is it worth a complaint to PALs or to the department that saw you at QM to at least kick off a bit & see if that makes anything move?
Why would you even do that job if you hate people so much? 🤷🏼‍♀️
Glad you're feeling a little bit better today

@thislittlebird I know I completely feel your frustration and allll other feelings, trust me I’ve been there! I would go back to the GP have a good cry and just say about how much it’s affecting your mental health with the anxiety etc. At my surgery I don’t seem to have a specific GP so see a different one each time I go and it was only when I got this young woman GP who really understood and went ham on guys to get me in, she agreed that the tooing and frowing was not on. If the GP says they’re not going to refer you then I would say about the self referral because I think they have to sign it off but I’m not 100% sure. Sending you lots of love xxx

@Etonmess20 Unfortunately my brain is my own worst enemy and I've started to feel silly/guilty/stupid/embarrassed and more about how upset I got in there. I just lost it and couldn't stop crying. I left without acknowledging the doctor.

I'm going to speak to "my" GP (the one who sent me for referral) and ask her what's going on. I will complain to PALS again, I think, since my initial complaint led me to this appointment with her.

It's so hard, as I'm sure you all know, but I just don't expect to get pregnant anymore and the motivation to ttc every other day is slim to none.

@GJW2018 The receptionist told me I could be booked in for next Thursday but no booking has appeared on my app so I'm going to call to ask about it on Monday. I will mention my skin issues I've had too (I have to talk about my repeat anyway) and the dermatologist put me on an antidepressant because she was convinced my skin problems were ttc stress.

I also don't have a specific GP, not sure how yours is operating but mine is doing phone appointments with one doctor (a man) the first three days of the week and the other doctor (a woman) does the other 2 days. So I have to wait until Thursday, but I will call again about it before Thursday and sit on hold in a queue for half hour ughhhhhh.

I really hope this GP helps. Going to email the Lister too for a private consult. No idea what happened with the private urologist I emailed, the secretary never came back to me,

@thislittlebird oh bless you, I am the exact same - my reaction to most emotions seems to be to cry! That coupled with the fact you carry the burden of infertility around with you on a daily basis it's absolutely no wonder that you got upset when an appointment you'd waited so long for went so horribly wrong! I genuinely would have been the exact same & you have absolutely nothing to feel embarrassed about! It's only because it's so important to you & you care so much that you reacted as you did.
Sod what the doctor thought too, you'll never see her again anyway

I'm the same tbh, I feel like after nearly 3 years of it was going to happen it would have done 🤷🏼‍♀️ it does feel like the constant TTC has ruined our sex life a bit ☹️

@Etonmess20 I'm not surprised. I feel a bit like that and we're only coming up to two years! @thislittlebird I'm glad you have a plan and you're not letting the bastards grind you down! 💪🏾

@thislittlebird So glad you’re feeling a bit better and have a plan in place. Don’t for one second feel embarrassed or guilty, it’s that horrible woman that should be ashamed not you! It’s disgraceful how much we have to self advocate for the healthcare we’re all entitled to.

@GJW2018 have you talked to Guys about the possible endo? I think @notyetamumbuttrying had a good outcome with hers?

@Etonmess20 Yep I am SO with you! Entering FW now and don’t know if I’ll even bother this month. As you say after three years it would’ve happened by now if it was going to. And the sex life really does take a battering. I took a break from the BBT last month and it was such a relief not to have the temperature tyrant by the bed I haven’t gone back to it yet. 🙈

@notyetamumbuttrying it just takes all the fun out of it doesn't it? It kind of feels like TTC is all it's about now

@RiverRiot oh god I don't know how you do BBT, I've not done that while TTC & have just relied on the advanced clear blue for ovulation, can imagine that takes over your life even more as you have to be really strict on when you do it don't you?
The doctor said we could still try at my appointment while we wait for the IVF but I just feel like what's the point? Not even so much as a chemical in this time so seems pointless!