ACU Ninewells

[RRk1469]

Hello,

Just wondering if anyone has been for a first appointment at the ACU in Dundee. My husband and I have our first appointment together at the end of January and just wondering what to expect.

We completed the first of our online consent forms in February 2022, we then had to go to the clinic (about 1.5hrs away) to have more bloods taken. In April we had a telephone appointment with the consultant who basically confirmed everything we already knew and said that we had been added to the waiting list to start treatment and they expected it would be in august, fast forward to last month and we got a letter to say that I was to contact the clinic on the first day of my august cycle to begin my treatment however I’m not due til the end of the month (typical 🙄)

Hello! I hope you don't mind me jumping on this thread?! My husband & I have been TTC for almost 2 years (will be 2 in September) after coming off the Depo injection. We have had all the standard tests done through our GP/ACU Ninewells and finally got a letter in June to say unexplained infertility and to contact the clinic when we reach 2 years. I've found the communication from the ACU very slow and frustrating (waiting 12 weeks for a letter to confirm my AMH level that I was told would have a full explanation of age ranges and typical values etc for it to be a single sentence)! I also find it very difficult to get through to the clinic by phone. We haven't been directed to any online forms or portal as yet...does this happen after you're on the waiting list?

Hey I’m sorry your having such a 💩time with the clinic, we have defo found everything to be done at a snails pace 🙄 we filled out our online consent forms around April this year and we are still waiting to start treatment x

@FSF85 welcome welcome! Our online portal access came through around 6 weeks after it was confirmed we were on the wait list for support.

I've also found their comms very slow and conflicting, never been able to speak with anyone on the phone and only had answers via email when I've instigated contact.

We've got our first appt on the 6th sept however awaiting confirmation if it's virtual or in clinic as we've had 2 letters through one saying virtual the other saying I've got tests to be done 🤨. Have emailed them today asking for clarification.

I can't comment on the 'normal' timelines as our home health board 💩 up our initial referral.

🤞🏻 you hear something soon ✨

@MrsMacttc hiya would you be able to tell me how long your virtual consult was? Trying to juggle work and TTC journey 🥰

Thank you for your message. It's good to know others are in the same boat (although sad as well) and it's not just me being paranoid that they've forgotten about me! I should be able to phone on 1st September to go on the IVF waiting list finger crossed!

@mrsmacmc thank you for your timeline, that's really helpful. Hopefully you've had some confirmation of when you'll be starting treatment by now?

@FSF85 we had an in person appointment last week with the midwife which involved going through our consent forms and me having bloods along with an ECG. They also gave us a whistle stop tour of the clinic which was good. Next step is a Near me video call on the 6th Sept with the consultant so 🤞🏻 we get a timeline from them along with treatment plan ❤️

I emailed & phoned the clinic this morning and have just received an email back to confirm we have been added to the waiting list. I asked about waiting times etc. and received the following response:

"The waiting time for IVF treatment is around 6-9 months to your first consultation, following this we expect treatment to start around 12 months following the date that your names are added to the waiting list.
Please note that this can change depending on patients circumstances, and if any further tests are required."

A little conflicting to what I've been told before but just crossing our fingers that we get to start a little sooner! 🙏

@FSF85

Oh no! They told me 6-9 months to start treatment. So if it's around 12 months that's now 3 months longer than expected!
I got added on in July this year so was expecting after New Year the ball would slowly start moving!
But...change my mindset...more time to save/get holidays in 🤣

Hi everyone

Hope it's ok to join here, it's good to read everyones experience so far and find out what to expect. We've had all our tests carried out at the Vic in Kirkcaldy. All came back fine, but in a same sex relationship so we will be using donor sperm and were referred to Ninewells in April once all our results came back.
Happy to answer questions about the tests.

Just received all our consent forms and have our first appointment at Ninewells (via phone) at the end of the month.
@mrsmacmc sounds like we are at a similar point? Although we havent had an in person appt yet.
How did your virtual appointment go?

@TTC86 welcome welcome 🥰 ✨ video appointment is on Tuesday coming for us 🤞🏻just watch as we got the appointment through and then another appointment through for the same day but in person which turned out to be an earlier one in person for bloods came through after the video consult one 🤦‍♀️ when I queried it with them they came back and said oh mrsmacmc your in person one is actually with a different date which was before our video appointment this coming Tuesday. Excitedly nervous / anxious about our consult on Tuesday 😬 at least it's video call rather than having to orchestrate time off work to attend in person.

Let's hope your timescales are more accurate and it is 6-9 months. When I spoke to one of the secrataries previously they told me 6-9 months but would hopefully be sooner so I think it's either constantly changing or it depends who you speak to! 🙏

Had our consult today to discuss protocol and a massive curveball threw us for the appointment. We had prepped questions and didn't ask them all as were a bit thrown about the below but were told to email it anything came into our heads.

My AMH has dropped from 7.1 to 1.9 in 18 months.

We will be on the flame protocol for November 🩸.

Not gonna lie it's fried my brain tonight as trying to work out what time off I need from work (deliberately been saving leave) and when as there are 3 variables in play and it depends on when my a minimum of 2 follicles develop to 18mm 🤯 which could be day 8,12 or 12.

That should be the flare protocol 😆

@mrsmacmc Sorry to hear your AMH has dropped, but at least you now know what treatment you will be starting, and you're in the right hands for the best outcome.

Try not to stress about the time off work, I'm sure your employer will be as flexible as they can. Have you told them about the treatment yet?

Thanks for the info about the bloods appointment, we still haven't had one through yet. All we have is the telephone appt with the clinic - Not even a video one so I'm now thinking it might not even be with the consultant.....

@CuriousAries @FSF85 I was also given a timescale of 6-9 months from referral in April to starting treatment. That's us now at 4 months and got our first phone appt for the 5 months mark so will hopefully know more at the end of the month after the phone appt.

Hi guys sorry I've not been getting notifications 🙈 we are STILL waiting to start our first round, I was due to call the clinic on the 1st day of my august period which never arrived so I'm due to start provera tablets on 10/9 (Saturday) and then wait for a bleed and then contact the clinic 🤞🏼

I've been struggling with my mental health a lot recently mostly due to the waiting and uncertainty, I just feel totally out of control over everything 😫 tea and cakes have been my only comfort which means my weight has yet again crept up so I'm preparing myself that I might not even get to start with this cycle if my bmi is back over the 30 mark 😭 I know I've waited years for this and I'm sabotaging my chances by stuffing my face but I'm literally in such a bad place just now I can't seem to get my finger out and get myself together 😩

Has anyone had some positive news lately? What are your next steps?

xx

@MrsMacttc and @mrsmacmc
Sending my love to you both! ❤️

That's us just got the app log in and consent forms done. Took my by surprise when I got the text at work!

@mrsmacmc
Can I ask where/when your first AMH was taken?
Just thought I don't think I've had mine checked? Only my GP has taken bloods to check day 21 back at the 12 month mark and check for Deficiencies etc. Nothing been mentioned about AMH...but actually if they have diagnosed me with unexplained infertility by letter already does that mean they must know the AMH?

Thanks you @CuriousAries , my AMH levels were checked in April/may time at our first ever appointment in the actual clinic at ninewells.

I found it odd that we had to travel to Dundee to hve bloods taken which were then to be sent to Glasgow for processing, the results fed back to Dundee then onto us - we live about 20 mins from Glasgow and 1.5hr from Dundee 🙄🙈

@MrsMacttc
You may have explained this on a previous post...but how come you aren't going through the Glasgow clinic if that's closer?

My first appointment in the clinic was to go over information forms, take bmi etc..then I have been back for ultrasound and hycosy etc in the clinic. All before being added to the waiting list.

I'm part of the Glasgow FB page and they seem to do it so differently....is it monklands and other places for all the tests then referred onto the clinic in Glasgow? And they talk about ART appointments etc. Whereas Dundee seem to do it all under the one roof.

@TTC86
You mentioned having your tests done at the Vic. I'm actually closer to there than Ninewells. However my address doesn't come under Fife.
Can I ask why you weren't sent to ninewells for the tests?- if you know!
Curious by name...curious by nature 😉
I like to know everything 🤣

@CuriousAries thank you, its definitely a rollercoaster with unexpected twists and turns! Take your time with the forms on the portal and 🤞🏻 it means you will move to the next stage soon! For my AMH I paid for a test privately April 2021 after reading about it and after checking with GP / local hospital team that the NHS wouldn't do it until we were on the IVF pathway.

We aren't local to Ninewells either it's a 120 mile round trip for us and had all our initial tests done locally at the GP / hospital. We're closer to Glasgow but apparently there's a partnership working agreement between our healthboard and ninewells so can't go to Glasgow. It blew my mind that blood 🩸 I had taken in Dundee was couriered down to Glasgow for testing and the results then shared back to Dundee.

Trying not to stress and hoping my work will be understanding (deliberately been saving leave) that my a/l days could change quickly depending on how my ovaries behave!

@CuriousAries we were referred from our local hospital and when we queried they had just said that it's probably because of wait times / availability.

That sounds so different to the way in which our investigations have been carried out, I have only set foot in ninewells once so far and that was for bmi and AMH blood test (same appointment).

My hycosy and ultrasounds etc were all carried out at my local hospital months ago before I had even had an appointment through for Ninewells.

Im scared to ask what an ART appointment is because I'm pretty sure I haven't had one? 🙈

@MrsMacttc
Apparently it's for bloods, swabs and BMI, then consents come after, then you get protocol.
Think when you get the ART appointment your at the top of the list. Don't know what it stands for though.
Different to Ninewells! Why can't they all just be the same so women across Scotland know clearly what happens at each stage.