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Original poster

Top of the waiting list appointment

211 replies

ProfessionalPirate · 16/08/2017 11:19

DH and I have been TTC just over 3 years now. We've had all the preliminary workup done at our small local hospital (HSG, scans, bloods, SA) followed by 6 months of clomid, which didn't work.

At our last post-clomid followup appointment in July we were told the next stage would be referral to James Cook for assisted conception and that we should call them to make an appointment.

When I called, we were immediately offered an appointment for the end of August. I assumed it would be some sort of booking-in/eligibility check and we would then get put on a waiting list for treatment. But i've had all the documents through in the post now, and it turns out it is our 'top of the waiting list' appointment! I'm now a bit excited at the thought that this may all be happening sooner than I thought, but also worried that there has been some kind of mistake/misunderstanding. Are waiting lists not as long as I thought now? Does anyone know how quickly I am likely to move onto treatment? Or what the likely sequence of events will be?

OP posts:
Thegrumpos · 16/08/2017 15:00

Hey I'm being treated at James Cook too! "Top of the waiting list" is basically what they call you when you've been referred but not actually "in IVF treatment", so for example I went to my first JC appointment in January but am only just now signed off and ready for IVF next cycle - however Lost about 3 months as we decided to take a little break so it would have been sooner without that. Also I had to have an additional scan due to a cyst which worried them but turned out to be nothing - however that also added 4 weeks.
You will need to have AMH levels done which is a scan and blood test, that will take a month or so to have booked in and follow up and they will want to do oh sperm again, also you have to attend a mandatory information event at the hospital before you move up to IVF clinic, so it will be a couple of months i would suggest. Mine has been longer due to reasons I've mentioned, I really like JC thought and although they never run on time in the gyno department I'm happy with treatment and support so far. Best of luck!!

Thegrumpos · 16/08/2017 15:04

I should also add that once you get the official sign off from consultant ( you see them in the gyno department not actually in IVF clinic until you're in treatment) it is still another few weeks to a month before you'd actually go and see the nurses because it depends on your cycle, so I was on cd4 when I had to ring them to book in for egg collection, so I have to wait that whole cycle to start AF again then ring them, which hopefully I'll be doing in a few days! - then I'll get my appointment to get all my drugs and off I go! It's a bit of a long winded process but considering I took a 3 month break it's not too bad - my drugs will start in 3 wks with egg collection and transfer the first part of October

Becbec123 · 27/11/2017 22:41

Hi !! How is it going ? Have you had treatment yet ?
Out TOTL appointment is 12th of December at JC ! xx

cherryontopp · 28/11/2017 11:01

I was at James Cook too. My advice would be to always ring and double check.

They booked me in for the same test twice, didnt send paperwork etc. Always double check things.

Mr Mustafa, the nurses and embryologists are brilliant despite the few minor mistakes, mainly admin ones.
We had our top of the waiting list appointment at the end of January and my IVF started in May.

Original poster
ProfessionalPirate · 28/11/2017 11:23

Hi Bec I'm in the middle of my IVF cycle now, got my egg collection tomorrow!

Things moved pretty quickly after my TOTL appointment. I called the nurses and gave them the details of my last period, and they booked in my egg collection date based on that (27th nov)

I had to wait for my next period and then started birth control pills, downregging etc from there. I'm on long protocol and the whole thing takes a lot longer than I imagined.

I would echo the advice of cherry and say just keep calling them if you're not sure. You have to call them to arrange the egg collection date, but I didn't realise this and was waiting for them to call me. Wasted a couple of weeks on that. Good luck for 12th dec!

OP posts:
Becbec123 · 28/11/2017 12:28

Thank you for the update ! Hope EC goes well tomorrow , please keep me updated ?!
This has given me a little hope as hopefully by March we would have started the treatment ! Thank you for commenting back it means a lot ! Xx

Becbec123 · 28/11/2017 12:47

Thank you cherry on top for commenting !
So you both waited about 3 months before it got going. This makes me so excited !
Did your ivf work if you don’t mind me asking ? x

cherryontopp · 28/11/2017 15:28

Mine did Smileim one of the lucky ones.
First attempt in May, got 10 collected, 7 fertilised and i think 4 made it to 5 day blast.
My best two were 4BB, as they weren't top grade I asked for 2 to be put back in, fully prepared to have twins.

Im now 7 month pregnant with a single pregnancy (had a bleed at 7w +5d so this could have been the other egg)

Miracles do happenFlowers

Becbec123 · 28/11/2017 18:17

Aww that’s brilliant ! So you would be 7 months now I guess ? How old are you may I ask ? We have been invited to a meeting on Thursday in the lecture theatre on the James Cook campus somewhere. We’ve been told we have to go as part of the treatment. Did both of you go to this ? Do they tell you much there ? Xx

cherryontopp · 29/11/2017 11:06

I was 28 at my treatment in May, now 29.

I attended yes and it was informal yes. A lot of the stuff i knew from looking into IVF itself. But does give a lot of practical advice such as car parking and prescription fees.

If you want any advice or to ask questions just PM me Smile

Becbec123 · 04/12/2017 23:03

Hi ! How did your egg collection go ? X

Original poster
ProfessionalPirate · 07/12/2017 18:58

Hi Bec, they got 10 eggs, 8 mature, 7 fertilised and one embryo was put back on day 2. They said there was no pointing in waiting longer as there was a clear front runner and none of the other embryos were doing as well. I asked for 2 to be put back because I felt it was a disadvantage to do such an early transfer, but they wouldn't do it. I think they've really clamped down on multiple transfers, especially if you're under 35 (which I am). They grew the others on to day 5, but sadly nothing was considered good enough to warrant freezing. So now I'm in my 2ww, and it's driving me crazy!

How did you find the information session? X

OP posts:
Becbec123 · 07/12/2017 21:42

The information session was ok. Basic info that you would know from research online. They said that there was no difference from transferring on the second day or the 5th so hopefully that gives you a little hope!

Hope you’re not worrying too much. Try and relax - easier said than done I know.

Keeping my fingers crossed for you ! x

90Bee90 · 27/12/2019 15:45

Hi Ladies,

I know this thread is from a little while ago but I was hoping you may be able to help me out with clarifying what actually is the "top of the waiting list" appointment and what does it actually cover off?

My husband and I are just starting the IVF route at James Cook too!! We were referred through our GP and we have waited 3 months for initial consultation with Mr.M (which we had on Christmas Eve). We'd previously had bloods / sperm counts / scans etc. done so we had already surmised from the results that there was low sperm count, so the xmas eve apt just clarified what we thought and he said we now need to go to a "top of the waiting list" appointment which will be in about another 3 months time, then our "ivf" appointment will be approx another 3 months after that. It feels like the process takes so long Sad . I know other areas can have much longer waiting lists but it sometimes feels like you're running through mud when you've already been trying for so long beforehand too!

Thanks in advance for any help!! x

Hoping1 · 31/12/2019 12:06

@90Bee90 me and my partner were at james cook christmas eve. We are top of waiting list to. Did you fill your form in there and then. We also know we have to do icsi as my partner is low but useable. We had bloods done on the day i am waiting for a scan and i have a phone call appoinment for the 14th when i asked what that was he said they will tell you every thing you need to know. He said to us there is a long waiting list and be May for us unless there is a cancelation.

Pleaseletitbeme · 31/12/2019 12:52

I was referred to JCUH nov 2018. Appointment came through for August 2019.
I chose to go privately.

90Bee90 · 02/01/2020 10:26

This reply has been deleted

Message withdrawn at poster's request.

90Bee90 · 02/01/2020 10:27

@Hoping1 No way, I bet we were sat in the waiting room together! I don’t think we filled out any forms at that point but they took more bloods from us and did our heights weights etc. I’d already had loads of bloods done and a scan but he wants to refer me to get them done again but from all the results so far we are in the exact same boat as u guys i.e. it looks to be a low count but useable and he also said icsi too for us. I wonder what the phone call appointment it for?! I’m just sitting tight for anything regarding next appointments coming through the post but with it being Christmas time I’ve not been holding my breath. He did say to us getting to the actual ivf apt is approx 6 months on average. Good luck for the phone call, u will have to let me know what it’s about confused! Did he not mention this top of the list apt to you then? x

Hoping1 · 02/01/2020 11:41

@90Bee90 No we were with fertility clinic for a year did loads of scan and tests and i was on clomid for a bit didnt work. Then was referred to james cook we got loads of forms tho post. One was an info meeting which we attened on the 12 did you go to that . And we were at james cook on 9.30 cheistmas eve. My partner also had to do a man test in September thats when we got the christmas eve appointment top of waiting list. We sign forms giving permission for icsi with them there and then he said we wait till about May for it to start. In mean time we have phone app and scan to get and wait for bloods to decided on long or short protocol tge whole process has been long for us and many tears but so glad we have a plan at last xxx

90Bee90 · 02/01/2020 14:21

@Hoping1ahh I see what u mean, so your xmas eve apt was top of the waiting list apt. God it has been a long process for you both. Thank u for letting me know what the apt entailed. At least I can feel a little more prepared now. Nope didn’t know anything about the thing in the 12th but maybe because we weren’t officially put on the ivf waiting list til xmas eve thats why they didn’t tell us about it. I think the length of time it takes for everything is the hardest part! Crossing my fingers that may comes around as quickly as possible for you guys and like u said at least u feel like u now have a plan which is good news!

@Pleaseletitbeme thank u for getting back to me. That is a hefty waiting time. I do keep thinking about private options but just worried that if we are successful and wanted to try for more in the future it could potentially be a crazy amount of money. Don’t know what to do for the best. Perhaps once we have the top of the list apt and find out the wait from there it might help us get a better idea

xx

Pleaseletitbeme · 02/01/2020 14:53

Bee.
I so hope it works for you.

Hoping1 · 02/01/2020 15:25

Just hang in there with the waiting its hard but you will get there xxx

90Bee90 · 02/01/2020 15:51

@Pleaseletitbeme thank u. How did things go with you?

@hoping1 thank you and good luck Smile!

xx

Pleaseletitbeme · 02/01/2020 16:15

Bee.
We’ve had MMC, Miscarriage and a cycle failure.
3 cycles in total costing circa £25k.
Planning on one last try. Which will being costs to approx £35k.
It’s been a sad rollercoaster to be honest.
Total mindfuck of a journey. There seems to be no rhyme nor reason as to why things do or don’t work.
I so hope you have first time success xxx

90Bee90 · 02/01/2020 19:31

@Pleaseletitbeme I am so sorry to hear that. My heart literally breaks for you. We’re so early on and my head and emotions are already all over the place so I can’t even begin to imagine how you are feeling. Sending lots of luck for your next round!!! I’m always just a message away if you need anyone to talk to!! xx