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.

@Bellwells yeah, I think time is not on my side either because of age rather than a surgery so I don’t know what to do. I’ve not heard back from my private clinic when I asked some questions, I’ll email them today and see what they say.

How long do they say to allow for ivf + PGD?

Honestly I think it might be nice to do the private cycle before Christmas so we can breathe for a bit, maybe take a trip and use a spa or hot tub (not allowed to do that because of DH’s sperm). My fear is Guys will call me right after I do the private round, but they did say new year.

Actually I had a question for @BambiOnIce80. So I asked our nhs clinic about doing self-funded but they said the waiting list is the same so there’s no point (argh!!!!) but I’m wondering if there’s any chance we could do a self-funded elsewhere and transfer any embryos to them, is that something you ever discussed with them? I’m probably totally out of my mind even wondering about this. Seems unlikely.

@thislittlebird I know Guys is a year - a year and a half from referral, but in terms of the private clinic everywhere is different.

@Bellwells is the wait because fewer places do it? In the scheme of things August to January/February waiting list isn’t that long for me, but I’ve already had around eight months of delays due to GP and gynaecologist errors.

Hi @thislittlebird, I was really lucky that I didn't have to try any other NHS clinics regarding the self-funded cycle because my local one seemed to have availability really quickly (which turned out to not actually be the case 🙄). That said, the next closest NHS clinics to me are all over an hours drive away, so wouldn't have fancied that when my clinic is only a 15 minute drive away. I would recommend factoring in travel time in your clinic decision making - IVF is stressful enough and, depending on what protocol you end up on, you could have quite a bit of monitoring before you even get to egg collection/embryo transfer. If you have to travel an hour + each way it can really add to the stress of it all.

@BambiOnIce80 unfortunately I’m already at a clinic that’s an hour and a half away 😩. I’ve been going there for the last week for scans because I’m doing a monitored letrozole cycle and yeah, it’s very stressful. I was so over it last week. We don’t live near enough to central London for short journeys unfortunately, and Guys is probably 45 mins from us which is fine but they’re the place keeping us waiting, and don’t have a faster self funded option. So it’s long journey or wait for months, there’s nothing nearer.

I just wish there was like...an nhs ivf funding team to talk to about options. It all feels so opaque.

@thislittlebird it's been a good few years since I lived in England (I've had my IVF in Scotland), but I did begin my IVF journey in England. At the time (so apologies if this is out of date!) I was allowed to pick where my NHS clinic would be. I was in a county with at least 2 NHS IVF clinics in it - I lived in one city and worked in another about an hour and a half away. I chose to be seen at the clinic in the city where I worked because it made it much easier to dive out of work and into an appointment, whereas being in my home city would have caused a hell of a work headache. Is Guy's your closest and are there any others just as close/closer that you'd be eligible for? Or one that's a bit further away but an easier journey? I really hope you can fit a cycle in before Christmas 🤞

I believe so, plus I think most places refer to Guy’s automatically as they are NHS I only found out about the option of other clinics as my specialist asked me where do I want my referral for.

I know … it’s hard reality. Some people have no idea what this feels like, it’s not just the treatment is to deal with the circumstances, specially for no specific reason in my case(unexplained infertility). It’s hard either with a reason or not but having no scientific reason to explain it’s dreadful.
I am basically submit my body to drugs and harming medication when doctors at same time saying that I am very healthy!
Wow …! I think I am going to my second round soon. At moment o try to exercise so my body keeps in good condition internally more than anything.
Please do not stop girls. Women encouragement in here …!

@thislittlebird
I completely understand you.
If you have any chance for an attempt on private, financially talking, just go for it. That’s all I can say …
I am 33 years old Ian’s already feel old for this so I can only imagine your side.

@BambiOnIce80 yeah, Guys is our nearest which makes the wait even more annoying tbh. Everywhere else is further.

@Pocahontas26 I hate that I have to take al these drugs. I’m very angry at my body for not working like other people’s bodies do. We started when I was 36 and the time has just flown by but also been very slow and torturous at the same time.

@thislittlebird what about CRGH (Great Portland St)

@Bellwells I didn’t realise crgh was there but it’s another twenty minutes to half hour give or take I suppose. So how does it work, do you just ask Guys to move your funding? It doesn’t seem very transparent

I’ve never moved funding so I’m not sure.

Guy’s told me CRGH is quicker but they can only treat 50 patients per year due to their funding limit as they are mainly private so even though Guy’s are slower CRGH have a limit to how many patients they can treat per financial year.
How many cycles have you had so far with Guy’s and what stage are you at?

I'm 39. If you can find a private clinic with space this year I'd go for it. My private clinic is already full for November and also close for December so you may find it will have to be 2022 anyway. I've been doing ivf for 2 years and am always having to push to get booked in for the next try. It's the logistics and waiting time that I find hardest. Good luck

@thislittlebird
I know … I don’t like either. Taking so much medication in my body for no specific reason (in my case) it’s annoying not that is less annoying in other cases but when you do have a reason you take it in different way I believe. I don’t know when I will be starting my next IVF I haven’t decided yet ..,. My work situation is not helping as is about to change.

@Bellwells I only get one cycle funded in my ccg so this is our only round. But we do get three FETS too.

@seven201 yeah the waiting is horrendous and I haven’t even had one cycle yet. My private clinic seem happy for me to start late November with a mid December collection which I was pleased by, but then it’s not that much difference from Nov to a Jan funded cycle wait wise. I’m going to call my nhs clinic again in early November and ask where they are on the waiting list I think.

@Pocahontas26 ugh, yeah work can really get in the way. I’ve stayed in this job because I know we’re likely to start in the next few months.

Good evening
If your work conditions would start changing and the need for a new job being imminent, and at same time trying to conceive via IVF what would you do ?
Would just try and arrange a simple job and possibly after having a child think in a better job/career or would you give priority to professional life ?
I am 33 already ……

@Pocahontas26 simple job and baby I would choose that any day of the week I’m 27.

@Pocahontas26 I don’t think I’d give priority to my job as such, but you are only 33, so I think you’re in a good position to do whatever job you want, as long as time off or flexibility is still possible, I suppose. We’re having changes at work next year and if that was to end in redundancy (more likely it will result in another role at the same place) with IVF ongoing I’d just have to go into the best job I could find that still worked with my circumstances and be aware I might not get maternity leave.

I’m 38 and I think my decision would be based on what would be most flexible for me, knowing maternity leave would probably be down the pan if I change jobs now.

@Bellwells @thislittlebird
Yeah … thank you girls. It has been tough to decide.. I am not sure what is going to happen. I am due to have interviews but changing house and location right now … oh God!

@Pocahontas26 I think you should sit down and write a list of your pros and cons for each decision and go from there, the most important thing is that you do what is best for you x

@thislittlebird sorry I didn't get a notification that you sent me a message.

I had my PGD consultation today with CRGH today, I think my husband preferred them to Guys because they showed some pictures as they explained different things. My heart is pretty much set on CRGH too, so as long as my parents can have their genetic testing done and have there results back by January, there should be enough time for the work up to be done so that we can start treatment at the start of the new financial year (April).

How are you getting on?

@thislittlebird ignore the first line of the message I didn't mean to type that I had messenger open at the same time and type the first line by accident

@Bellwells I won’t lie, I did feel very rushed in Guys. But I won’t complain too much since this is our only funded round. I just wish they’d hurry up, there’s people on other threads at other hospitals who know they’re starting in January. Muggins here doesn’t, I have to just sit around waiting for Guys to get through their waiting list and announce it all last minute. I’m annoyed.

That’s good news. I didn’t realise parents were involved in it all too, interesting. How did your transfer of funds go? Process wise.