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Infertility

Our Infertility Support forum is a space to connect with others in the same position, discuss causes, treatment and IVF, and share infertility stories of hope and success.

IVF at Guy's & St. Thomas' & general process/timeline

999 replies

Lill02 · 14/01/2020 16:24

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!

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Elouera · 07/03/2020 21:15

I found them overall to be good, but I'm only at the beginning- day 5 of injections.

I suggest anyone starting to process to check what the IVF requirements are in your area. Some areas won't cover any cycles at all, no matter what age. Some cover 3 if under 40, and only 1 age 40-41. Most have BMI requirements too.

I had testing done aboard, so GP referred me straight away, but I think the initial appointment was 2-3mths. Initial appointment went through our history, checked requirements for our area and checked BMI. Mine was too high to qualify, so was advised to lose weight, and request a fast track referral from GP when I had lost the weight.

I wrongly assumed a 'fast track' referral back would be quick, at least within a month. My GP had difficulty finding details of how to refer back using the paperwork St Thomas had sent them! GP had someone that deals with such referrals chase it. Unfortunately, this person had no idea, and told me wrong information about IVF requirements in my area. I had to advise HER and insist that it was very time limited, as my birthday was approaching which would mean I was no longer allowed any cycles at all.

It was now Nov 2019. I finally got a call from someone at St Thomas advising that the clinic would be closed all of Dec, and I might not get seen till Feb. I again reiterated my age and my concerns. I was given an appointment in early Jan. From then, things have been fairly quick. Initially they said I'd start in Apr, but again, I advised of my age/birthday, and I started the injections last week.

So far I've only had a few minor issues The actual injection process was rushed through rather quickly, and I can easily see that someone might get things confused. Reception told me to wait in the waiting room. So I waited and waited. 40min later, when most others have gone, someone asks me what I'm waiting for. Turns out that if you are having a blood test, you press a button on a machine for a number. There is nothing telling you this, nor did reception or the nurse the day before say anything about this. Its a minor thing, but an annoyance I don't need.

In hindsight, I wish I'd checked the BMI requirements for my area and starting losing weight much sooner. I wish I'd asked to be referred back to the hospital before I reached my goal weight, as it was a further 4mths from asking GP for a referral back, to actually seeing someone at St Thomas again. Best of luck everyone and keep us updated x

Westnorwood · 08/03/2020 12:48

If it helps anyone here is a photo of the long protocol process Guys ACU gave me

IVF at Guy's & St. Thomas' & general process/timeline
Lill02 · 15/05/2020 14:09

Hi everyone, how have you all been? I guess we’ve all struggled over the last couple of months with delayed/cancelled cycles and appointments...
I felt a first but of hope return this week when I saw on the HFEA website that Guys Hospital has been approved to reopen the ACU. Has anyone had any communication from them yet?
Hope you’re all as well as could be given the circumstances!

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Westnorwood · 15/05/2020 15:48

I spoke to the unit on Monday. At that point they haven’t applied. Honestly they have been dreadful with communicating with me over my FET or the closures.
They can’t tell me where are am on the waiting list or when they are restarting. I’ll try and give them another call on Monday.

Lill02 · 15/05/2020 16:44

Oh, that’s so shit, sorry to hear that! They definitely should be able to tell you. We were still waiting for our initial consultation after being referred up from the gynecology unit after all the tests, so I can imagine we might fall between the cracks a bit and it will take ages to get our foot in the door now...
Keep us updated, good to hear others’ experiences and if we can support each other somehow. X

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Leala20 · 15/05/2020 17:37

Hi ladies, hope you’re good. I emailed them a week or so and still haven’t heard back. I was meant to be on the waiting list for September before covid so not sure this means there’s a 2 month delay? I am really thinking to go private as cannot stand the uncertainty with the longer waiting. If you hear anything thank you for sharing

Westnorwood · 03/06/2020 10:50

How is everyone getting on? I spoke to the unit this morning. They are currently seeing people put on the waiting list in Feb. I was put on in March so they think it will be another 2/3 weeks. This FET by the way not sure if the new cycles are the same.

Lill02 · 03/06/2020 13:29

Hi @Westnorwood!

I got a call last week and they’ve booked us in for a new patient appointment next week. They said once that’s done there will probably be a bit of a wait till we actually get to start treatment though. I’ll let you know if there’s news next week.
I’ve felt so relieved that things are moving forward, even if it’s just slowly.
Hope you all have a good week!

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Leala20 · 03/06/2020 16:37

That’s great news. How do you manage to get hold of them? Which phone number do you use? I have not heard anything and sent two emails and still no reply. Thank you and hope we get some news too.

Westnorwood · 03/06/2020 17:58

Call 0207188230 someone will take a message and they call you back. Mention you have tried to email with no response.

Usually I call and it is only when I call back chasing why nobody has responded that I actually get to speak to someone.

Leala20 · 03/06/2020 18:58

Thank you so much!

Lill02 · 09/06/2020 16:05

Hi all, bit of an update from today. We have been put on the waiting list and they said it could be about 6 months.
I feel like we’re one step closer, but also really down and deflated as it’s still so far away. :( I was hoping they would say 3-4 months...
I hope it’s worst case scenario and it moves forward for all of us quickly. X

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Westnorwood · 09/06/2020 17:41

That’s crap. The waiting is the hardest part. I found that even going through it you are always waiting for a scan or test.

You never know, some of the privately funded patients may go elsewhere to get immediate treatment bumping you up the list. I am not quite sure how the lists work.

Lill02 · 15/07/2020 17:32

Hi ladies, it’s only been a month but I’m having a really impatient day... 😞
How are you all doing? I’m curious to find out how far the waiting list has moved on. Has anyone started their treatment yet and when did you join the list?
I might give the clinic a call at the end of the month for a bit of an updated idea.
Thanks! Lots of love x

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Westnorwood · 15/07/2020 18:04

I am down regging for FET at the moment.

It is a bit odd as I’ll only visit the clinic twice, on my own. With the full cycle there were sooo many appointment.

The just sent me the treatment plan and the drugs and I’m pretty much just getting on with it. When ever I have had a question about the actual treatment I have emailed and got a prompt response.

I should be doing the transfer some time around 10th August depending on linings etc.

I went on the waiting list early March. There was some confusion their side on when I was put on the list so I ended up complaining and showing them the emails from when they confirmed this.

Lill02 · 22/07/2020 12:24

Hi @Westnorwood!

Thanks for your update. I’m hoping for treatment some time in October then, by the sound of your experiences.

Got my fingers crossed for your FET! Good luck!

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JadeS174 · 14/08/2020 23:14

"We continue to work hard to increase our cycle numbers as safely as possible and are currently in the process of contacting patients in order to start treatment. Subject to any further potential interruptions to our service, we hope that all patients currently waiting for treatment (those that have a treatment plan and have signed consent as of 1 August 2020) will be able to commence their treatment by the end of this year".

This is the latest on the Guys ACU website.
My referral was only sent off 5 weeks ago. Looks like I'm going to be in for a looooong wait 😔 x

Lill02 · 15/08/2020 09:38

@JadeS174 Welcome to our thread! Sorry to hear about your experience.

The latest for me was an email saying it would be about 13 weeks until I got a phone call to discuss the dates of my treatment and run through a COVID questionnaire, not yet to start treatment though. So having joined the waiting list in June, I think we might start in December if we’re lucky. 😔

At which stage of referral are you? Is there possibly another clinic that you could get referral to instead? x

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JadeS174 · 16/08/2020 11:13

@Lill02 I have been TTC for 2 years. I was given 7 months worth of clomid/letrazole to no success so my consultant made our IVF referral to Guys ACU 5 weeks ago- he told us that's where we would be referred as that's the clinic our CCG uses. I don't know about other clinics.

I hope you get started soon. X

ThePurpleFairy · 16/08/2020 12:41

Sorry to hear you’re having such a hard time waiting. I know this feeling very well and Guy’s leave a lot to be desired with their communication. We are doing PGD with them and had our egg collection in June cancelled. It’s been rebooked for October now but the waiting is just excruciating isn’t it, it’s taken us 2 years to get to this stage and it feels never ending! Assuming we get any embryos at all then god knows where the FET waiting list is at (with PGD they freeze all day 5 embryos and then have to carry out genetic tests to see if any are suitable, that alone can take 6 months before I even get put on the FET wait list Sad)

Lill02 · 11/09/2020 15:58

Hi ladies, how’s everyone doing? Any news or updates? I’m still waiting for that call... no surprise I guess, we’re only 5 weeks into the 13 week wait they predicted.
Hope you’re well!

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JadeS174 · 11/09/2020 20:48

@Lill02 it's been 9 weeks today since our referral was sent. Haven't heard anything. Don't know how long others had to wait between referral and first appointment? I feel due to Covid I'm going to be waiting a while xxx

ThePurpleFairy · 11/09/2020 21:10

I’m waiting to start injections on 26 September. I’m counting down the days and desperately hoping I don’t get a second dreaded Covid cancellation

Lill02 · 11/09/2020 21:30

@JadeS174 Hope you hear back soon. Hang in there!

@ThePurpleFairy that’s fab! Fingers crossed for you. I’m sure it’ll be fine and you’ll be able to go ahead.

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JadeS174 · 22/09/2020 14:22

Hi all,

I was informed last week that the waiting list is now 2-3 months despite last month being told it was 1 year.
Anyone heard anything?
Hope you are all okay.
XxX