So tired of waiting

[thislittlebird]

That’s all really. I found out my nhs round of ivf will likely be in 2022 now and I’m devastated because they told me it would be 2-3 months from late august. I now realise it won’t be because I’ll hit Christmas and my cycles are timed badly. I feel broken and I feel so old. Every month passes I’m nearer to my next birthday (39) and I want to scream. Part of me wants to do a private cycle (which we are allowed to do in my CCG) but I know the first round is a bit of trial and error so I always wanted my nhs round to go first.

I don’t know why I’m posting really. I’m very tired, and I’m sure lots of you feel the same. I just want our chance to try and it never seems to come round.

I’m sorry you’re going through this. I went through several years of infertility. I would encourage you to go private given your age. That’s the most important factor. Where would you go private ?

I've been where you are and completely understand. I was 39 and 40 was creeping ever closer before my NHS cycle could begin. We decided to take the hit and do a self-funded round in our NHS clinic to make sure we had egg collection before I hit 40 (this was a few months before the pandemic hit, so possible at the time). We got 6 embryo's, transferred 1 (which sadly resulted in an MMC) and had 5 in the freezer. Our NHS clinic then allowed us to use our NHS funding for all 5 frozen transfers, if we needed to transfer all 5 to get a 'live birth'. We've had 2 FET's on the NHS and are happily willing to pay for anymore if this one works out in a 'live birth'.

The constant waiting erodes our mental health. I always felt better when I had a definite plan/date in place, so would agree with the pp who said to at least have a look at what your private options are. Wishing you all the luck for your journey.x

Thank you both for replying.

@Dreamsupreme I have a private clinic who I was going to start treatment with in September and then the nhs said it would only be 2-3 months wait from the end of August so we changed our plans. I’m regretting that now, I didn’t realise the wait would keep getting extended and no one mentioned Christmas to me, it only dawned on me recently.

@BambiOnIce80 I am seriously considering a private round. My husband is less keen because I know he’s more cost conscious, but I’m losing my mind waiting. If I knew it would be November that’s different but they just won’t say for sure and if it isn’t November then it’s January at the earliest. I feel so gutted my cycles are at exactly the wrong time of the month too, so I hit all the cut off points for Christmas closure. How did you raise the issue of nhs funded FETs for the private round with them? I’m not even sure how to address that option. I take it your last FET was successful?

The private clinic I’m with will also shut at Christmas so my window of opportunity is only next month before I hit Christmas. And obviously the private arm of my nhs clinic closes at Christmas too. We are trying letrozole/ovulation induction this cycle while we wait with the private clinic.

@thislittlebird I was exactly the same at the end of 2019 with our fresh cycle. I was told it'd only be a month in May, then found out they were shutting for the entirety of the summer due to retirements and a clinic deep clean, then they were behind, and then I got the go ahead for my November period, but that meant I'd clash with the two week Christmas shutdown - it's maddening! 🤯

I didn't need to raise the NHS funded FET's with them because they were on it and offered them to me on my review post MMC. It took some of the pain out of both the MMC and the fact nothing was happening because of the pandemic. They said I could have another fresh cycle but, given my age, they advised I'd be best off cracking on with the FET's with the 5 frosties we had. Given I'm now 41 I think, with hindsight, it was the right call to make. Yes, I'm currently 28+4 after our 2nd FET (1st one resulted in an early loss at 6 weeks), so we have 3 left in the freezer. I'm worrying that we'll have time left to transfer 1 of those, so glad I didn't go ahead with a second fresh cycle and bank anymore than that. Everyone's situation is different though, so you've got to do what's right for you. The biggest hurdle is getting going with that first fresh cycle - your game plan will develop from there.

Good luck with your letrozole cycle in the meantime 🍀

@BambiOnIce80 the entirety of the summer? Jesus. It’s honestly just absolutely batshit to me that they dish out such unrealistic wait times. If it’s 4 or 5 months then tell me that. My whole life is revolving around that date, why tell me 2-3 months? It’s so upsetting.

They just confirmed in another email that I’m unlikely to get called in November so realistically it’s late January (because my cycles are end of the month). I’m gutted. I’ve been clinging to this date, planning around this date. It’s so hard to have that ripped away. And I had to contact them, I would have been sitting here waiting in November for that call 😔.

I’m glad the second FET is going well for you. Are you hoping to transfer one more in future all being well? I know it’s near on impossible to plan.

I desperately need to do a cycle at this point. I don’t think the letrozole will work, I don’t ovulate and he doesn’t have good swimmers. But we’re trying it for a couple of months. Honestly though, after the email saying this year is unlikely I’m thinking I will try to see if my private clinic can fit me in next month. I don’t think my mental health can take another 3 months plus of waiting.

I am so sorry @thislittlebird ❤️ there is so much of this experience that is outside of our control and its so shit. I think if you have the means to go private, that sounds like a better option right now, especially as it won't impact on your nhs eligibility.

Lots of love x

The waiting is soul destroying, and there's so little support available during the waiting... If you've got the opportunity to fit in a private cycle, I'd go for it. There's no way of knowing what shape the NHS fertility service is going to be in after Christmas - winter flu season on top of Covid could potentially shut wards and require staff redeployments. Plus, the constant waiting is so, so hard on mental health.

Good luck!

Thank you @VenusStarr @Scirocco

I think we're going to do it, or at least call to enquire if we can be fit in next month. As @scirocco said, the waiting is soul destroying and I'm struggling right now. We had saved in case we did need private. That's a good point about not knowing what state the nhs clinic will be after christmas. I didn't plan to do a private round outside of an access package but I think paying for one might be the best plan under the circumstances.

Have you tried a private clinic that accepts BHS patients?

NHS**
@thislittlebird

@Bellwells I haven't, I'm not really sure how that works, is it where they transfer funding?

@thislittlebird Im not sure how it works in terms of transferring your funding but I am currently in talks With Guy’s Hospital and CRGH.
Guy’s are mainly NHS but accept private patients and CRGH is mainly private but get NHS funding yearly so they are able to treat a limited amount of people yearly.

@Bellwells interesting, I'm also Guys. Have you had treatment with them before? I'm considering looking into if they can do my cycle at Care, who I think do NHS funded rounds. If they can't do that then that's fine, at least I still have the Guys round.

@thislittlebird no I’ve never had treatment with them before, I’m doing PGD-IVF though so a little bit different as I will be testing my embryos to see if they carry a particular gene.
Have you had treatment at Guy’s before?
What stage are you currently at with them?
I have seen a few things about Care online so definitely give them a go or at least enquirer about their wait times - theres no point in moving if your going to be right at the back of the list again

@Bellwells not had any experience of ivf or fertility with them before. I’ve had the tests and consultation and I’m on the waiting list. Yeah, I won’t change unless it makes some sense, it’s not worthwhile. If it makes things more complicated I’ll just stay put, it’s so frustrating that the wait time just keeps growing.

@thislittlebird this is one if the reasons why I am reluctant to go ahead with Guys. DH and I had our first meeting with the PGD consultant last Monday and we was told the referral time to the ACU is 4 months and which point we will receive a date for our first appointment which will be two months later.
Where as our first appointment with CRGH is 3rd Nov and I’ve been told I can start treatment March/April. CRGH told me to come off the mini pill so I am just waiting for AF to come, but I need to have two spontaneous bleeds before I can call on the first day of my third bleed to get my testings and follow up results booked in.
So CRGH have a completely different process to Guy’s.

@thislittlebird the only reason why I am still trying to choose between these two is because I found out that with Guy’s will transfer each embryo one at a time until a successful pregnancy, or until the embryos run out. If they have run out, this is considered one cycle for funding purposes.
Where as with CRGH they will try 2 FET’s per cycle and the third one will be classed as the start to your 2nd cycle so I feel a bit mind boggled today as my heart was initially set on CRGH

@Bellwells oh, so the PGD consultant wasn’t at the ACU? What a long time it seems to take for PGD.

I know all the clinics do things differently and I really don’t mind a wait of some kind, but I don’t like the goalposts being moved. It’s too chaotic. Sod’s law says we’ll go ahead with the private round and then Guys will call us not long after. 🤦

I think the FET offering is different for each CCG. Mine offers 3 transfers, which is still good so I can’t complain. No private clinic will offer that unless you have an access package. The third being the start of your second cycle isn’t great. Can you move the embryos elsewhere?

Yeah PGD is slightly different as you can go to any clinic you want (you don’t have to worry about CCG’s thankfully) that offers it but you have to have a referral from a geneticist. The only main difference is you have an appointment with the geneticist to tell you about the process, then your referred to the ACU for all the normal appointments and at day 5/6 of the embryos cells are taken from the sack which the placenta grows in and is sent off for genetic testing then with FET everything is as normal.
For PGD Guy’s say it will take anything from a year to a year and a half.

I think thats one thing thats had me questioning Guy’s; I’m always hearing people say they are not realistic with the dates they give you oh yeah and their communication skills sound rather poor.

Thankfully because I’m PGD CRGH will still offer the 3 cycles im entitled to.
I’m rather sad that with CRGH the 3rd transfer will be the start of your 2nd cycle it’s really making my hand swung to Guy’s but I need spinal surgery and my surgeon has told me to go and have my kids first so I sort of need a clinic that is quick.
Yeah with CRGH I can move my embryos elsewhere which is handy, I need to find out there storage fees but I will check that all at my appoint next month.

Waiting is exhausting! Seriously is annoying, soul-crushing and makes me angry. Sorry for just piling on, and venting.

@dutchessmom I know it feels like a never ending game, how long have you been waiting for since referral

Hello beauties.
Just joined this group…. Never thought I would need to feel connected this way but I am happy we can all talk about this.
I did 1st round IVF month ago, was long …. 1 blasto transferred, apparently good rate, but ….. nothing happen after that.
I might need to try again. It’s really difficult because no one never tells a woman that they might struggle to conceive.society is all about birth control medications, worry about partners and intimacy related … then this !

@Pocahontas26 welcome to the group!
Have you had a follow up consultation with your clinic to talk about the next steps?

Just seen these messages, sorry, I wasn’t getting notifications on this thread.

@Bellwells have you had any more thoughts on Guys vs CRGH? I’m just in a complete muddle tbh. Can’t decide whether to try to do a private cycle in November. I’m annoyed Guys are making me having to consider it.

@dutchessmom hi! it’s awful, how long has it all been going on for you now? It’s two years for us, I don’t know how people do this for more years.

@Pocahontas26 welcome! I’m sorry you’re heading towards round number two, it sucks and really is the worst kind of surprise. I’m kicking myself for not starting ttc sooner tbh, I’m ageing fast 😩

@thislittlebird I’m leaning more towards CRGH as they are quicker than Guy’s and times not really on my side due to my pending surgery.
Also CRGH have better stats than Guy’s and CRGH also offer PGS testing so there are a few more benefits I guess.

It is honestly so annoying Guy’s are making you make this decision but if you can afford to do a private cycle I would say go for it. There is a lot of waiting to do with Guy’s so anything you can do to speed it up would be great!