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!

Hi @JadeS174 , from the conversations I’ve had with others and what it looks like for us personally, it sounds like the wait is about 6 months.
For us, I think our call to plan treatment will end up being about 5 months wait (another month from now to go), and then another month or two until treatment actually starts. This will fit with what they told us when we signed our consent forms. I’ve been emailing the ACU every 6 weeks or so for an update and they’ve been quite good at giving us an idea of where we are on the list.

@Lill02 I kindly asked if someone could give me an idea of where I was on the waiting list but I got the following email:

"Please bear in mind that due to Covid 19 we have a backlog of patients waiting for appointments who were referred before July. You have been added to our waiting list, and will be contacted with an appointment when we have reached your position on the waiting list".

Didn't really help me. XxX

@JadeS174 Ah, I’m sorry, I think I got confused with the different types of waiting lists! The waiting list I was talking about is after signing consent forms and until IVF treatment starts.
I think the list you’re on is to get your first consultation with the ACU and to do your consent forms, is that right? Unfortunately I don’t know what that wait is currently like...

@Lill02 yes I'm waiting for first consultation. We shall see what happens. Hope you get to start treatment soon xxx

Hi ladies,

I have an update! To our complete surprise, we received a call yesterday where they told us to come in on Monday (probs 2nd/3rd day of my cycle) for a repeat blood test, to be taught how to inject and for a scan. My medication has been ordered and will arrive on Tuesday.

My concern is that they haven’t mentioned me starting the pill with this period. For you ladies who have recently had treatment there - are they currently just letting patients go with their natural cycle timing? I’m worried they will only get me started on the pill another cycle later, which means actual stimming, etc won’t happen until December where they have got their Christmas break...

It would be really interesting to hear your recent experiences!

And for those waiting for the same call, maybe it’ll be sooner than expected! 😊

Hi
I’m also with guys waiting to have my 2nd frozen embryo transfer. I have my telephone consultation next week. Anyone know how long the telephone consultation takes?

Hi all,
How you all doing? I got this update today if this helps anyone.

"Currently, your wait for an initial appointment will be 2-3 months, and once your course of treatment has been decided, you will then be placed on another waiting list for a scheduled appointment with the nurses for the start of your treatment which is another 4-5 months waiting.

I am sorry to be the bearer of such bad news, but I am trying to give you a realistic picture of the current situation. You are very fortunate that (due to your age), you can undertake IVF privately, and if it was unsuccessful, you would still be entitled to a NHS round of IVF.

Please let me know your decision. I wish you every success on your IVF journey".

XXX

Hi all, I hope you don’t mind me adding here - I’m in the NHS catchment area for Guys but also for Kings Fertility. I chose Kings and was seen really quickly. Our time line was end of June had initial tests at Kings (off the back of GP referral, but I could have chosen Guys at this point) and found out we need ivf, Kings applied for our funding, it was agreed in August, started Stims in Sept and had our transfer last week.

Not sure if it helps but if you do have a chance to choose Kings my experience is there is less of a wait list.

Best of luck everyone

Hi all!
Hope everyone's doing okay.
Just an update that I have just had a call and been booked for my initial consultation on 21st December. Referral got sent off in July xxx

@JadeS174 hello, I'm being referred here too. My referral was put through 25th September and only heard it was guys as I chased up my Gp. I emailed guys and they said I need an initial convo first and then would be referred to acu after that. Is your consultation in dec with the acu? It does sound like such a long process doesn't it! I'm tempted with private now..

@notyetamumbuttrying
Yes, this appointment is with the ACU.
I've enquired about private too xx

@JadeS174 did you have the initial chat before you got the date for the acu? If so, how long did it take to get your date through after that chat? X

@notyetamumbuttrying no I haven't had any initial chat or anything? Strange. Don't know what that's about xx

@JadeS174 ok thanks. I was referred from the queen Elizabeth hospital so maybe it's something they do. Either way, looks like it's going to take a long time and I feel like I'm running out! 35 in March and we wanted two when we first started all this. Think we'll make a decision next month over going private. Good luck with your appointment and treatment xx

@notyetamumbuttrying oh you will get there! I wish you all the best too. I have everything crossed for you xx

Thank you 😊 @JadeS174 xx

Hi all, hope you're all doing well and everything is ok. Sorry long post but I have a couple questions about timeline as I am a bit confused reading everything.

Background: I have just moved to the UK a few weeks ago. My partner and I are looking to start IVF asap. I am 28 so still ok with age but have a complicated history - burst appendix when I was 10 which was not cleaned out well, then four more open surgeries in past 12 years for ovarian cysts, ectopic etc. Recently in August I had my second tube removed and my first bowel resection. Unfortunately due to extensive bowel adhesions, after many hours the surgeons couldn't locate my uterus or ovaries, even though they appear on scans. I had a wonderful doctor in Sydney who was going to look to set up a surgery to start removing the bowel from around my ovaries to expose them so we could retrieve some eggs. Unfortunately due to my partner moving back to his home in the UK that was cut short and now I am here.

I called a GP two weeks ago and she referred me straight away to GSTT without any need for tests given I have no tubes. They sent me this email last week on timeline:

"We have received the referral

Once referral is received it is vetted to ensure the necessary information is available, if this is missing it will be rejected and sent back to the GP
If referral is accepted you are added to a waiting list and the tem will book the initial appointment in date order this may be face 2 Face or telephone, after this consultation it is decided if you qualify for IVF funding
A funding application is made and this takes up to 8 weeks after which you are put on another waiting list for a New Patient Appointment
At the New patient appointment you sign the necessary consents, have baseline scans and blood done and then you are added to the treatment list.

Treatment waiting list is managed by the nurses and this step takes up to 3 months to complete.

All together the whole process takes up to 9 months for completion, hope this gives you a rough idea of waiting times."

What I am wondering is what the wait is from referral to the first conversation? I am hoping not too long as they will then need to organise a surgery after first conversation so I am keen to get a move on. I was wondering if anyone has had some experience recently with wait time from referral to first call? I am a bit overwhelmed trying to make sense of it all.

Thank you so much in advance

Hi @Vparisi! Sorry you’ve had such a tough journey already, it sounds really hard. Also welcome to London!
I’m sure you’ll be in good hands with the team at GSTT, once you get to the Assisted Conception Unit they’re really great.
It was nearly a year ago for me now, but between being referred from the GP and our initial conversation with GSTT, I think it was about 8 weeks. If I remember correctly, you just get an appointment through the post.
I hope this helps and that the time goes quickly for you. Keeping my fingers crossed for you!

@WaitingToExpect20

Hi *@Vparisi*! Sorry you’ve had such a tough journey already, it sounds really hard. Also welcome to London! I’m sure you’ll be in good hands with the team at GSTT, once you get to the Assisted Conception Unit they’re really great. It was nearly a year ago for me now, but between being referred from the GP and our initial conversation with GSTT, I think it was about 8 weeks. If I remember correctly, you just get an appointment through the post. I hope this helps and that the time goes quickly for you. Keeping my fingers crossed for you!

Thank you so much! Super helpful :)

Hi All,

Our treatment was on hold due to the pandemic.

This year has been a stressful year. I am absolutely terrified of the procedure. The needles, medication, side effects . For someone my age the success rate is very low and I have low follicles.

Any tips and advice would be much appreciated.

How did you cope with unsuccessful ivf?

Staff at this hospital are very supportive.

Thank you in advance.

Hi everyone, hope you don’t mind me jumping in on this post. This is my first time on here. Don’t know all of the abbreviations as yet so bear with me!!

We had our first consultation with Guys ACU yesterday. We’ve been TTC for nearly 3 years with miscarriages at early stages and loads of chemical pregnancies. I had all the tests you can imagine, all clear, but the last blood test that was done for my husband showed he has a translocated reciprocal gene arrangement which could be causing our miscarriages. Therefore we’ve been offered PGD at Guys ACU.

We were seen by Cambridge hospital first who were said they’d referred us to Guys on 1st March but our referral somehow went missing (for a second time in this long process by different hospitals) and ended up being sent 5th May. We complained about this and asked to have our initial consultation sooner but Guys said no so we were given the date of 10th Dec.

Feeling incredibly down and hopeless after yesterday, don’t want to put too much on here about our experience yesterday as don’t want to upset or put others off as I’m sure there are more good experiences than bad but it wasn’t what I expected, I don’t know maybe I was expecting too much, I hoped to feel excited that the ball was rolling but left feeling worse than when i went in.

I was originally told the wait to start treatment from our initial appointment would be 3-4 months so in my mind I thought March at latest which is fine as we’ve just moved house and need to do a few bits to get it how we want so can occupy ourselves whilst we wait and it will soon whizz by. However, we were told yesterday 6-8 month wait, just feel so upset. I’m 39 in July and was told although we are entitled to 3 rounds I’ll probably only get 1, 2 if we’re lucky. Not sure the extra wait is because we’re having PGD on top of IVF.

Anyone else going through this?

Sorry to hear this @Kit82 what's pgd? I'm not actually with guys yet. Our first appointment is 22nd feb and we were referred by urology and were told we'd get a repeat SA, my AMH checked and to sign for the forms for funding...I bloody hope that's the case as I was expecting a sooner appointment. I'll be livid if that doesn't happen!

Hi,
I think the waiting time is not that long hopefully they should call you in sooner than that.

I hope everything works out for everyone.

Just be positive and patient. Good things comes to those who wait

Kit82 I am very sorry to hear about your struggles. Hopefully there will be some good news to come.

Thanks ladies,

@notyetamumbuttrying PGD is Pre-implantation Genetic Diagnosis. Cells from the embryos are tested to check they don't have unbalanced chromosomes, so it's yet another stage they have to survive before implantation. The consultant said I have a lower than average number of follicles so that's really upset and worried me too.

Hopefully by your appointment in Feb they will have caught up with everything after Covid delays and your treatment will start in good time.

Best of luck to you too @Muslim82, I wish I could be more positive like you, perhaps
I'll feel brighter tomorrow, thanks for your kind words xxx