NHS IVF waiting list time in Glasgow, Scotland - what should I expect?

[foxlife]

Hi,

I'm just wondering what other people have experienced in terms of IVF waiting times in Glasgow?

• In September 2022 my partner and I officially started trying for a baby. I was told by my GP I'd be eligible for IVF one year from then.
• In September 2023 I was put on the IVF waiting list and had initial hormone/sperm tests through the GP.
• On June 2024 we had our first phone consultation with Glasgow Royal Infirmary - I was told that things would move forwards from September 2024, but that I would be put on the waiting list for a hycosy test, which should come through in the meantime (I was told to expect a letter within 2 months).
• Today (Sept 6 2024) I rang the Royal Infirmary to see if there had been any developments, and I was told I might receive a hycosy test by December 2024, and that nothing would go forwards before then.

If I had known that everything was on hold until this test and that the test was a 6 month wait then I might have considered going private. I can't afford to do IVF privately, but spending 400-500 pound to save 6 months I would have done.

I am worried that every step of the way will have another hidden 6 month waiting list, and I'll hit menopause before I get to treatment. Its very difficult to make informed decisions about the process if its not clear how long it will take.

I see that I was really stupid in 2022 when my GP said the waiting list was 1 year, to assume that treatment would start in 1 year - if it turns out to be 3 years until things get started, and I could have paid 800 quid to fast track away that time, then I will be really upset.

Any experiences/advice much appreciated!

hi!

The lack of proper info around waiting times absolutely killed me. Felt like I couldn’t plan anything.

I’m with Forth Valley over in Dundee rather than Glasgow. We are unexplained infertility, my timeline was roughy as below:

Went and saw my gp October 2022 ( I came off the pill in 2019, so they deemed me as TTC for 4 years). Gp referred me to Forth Valley gynaecologist.

05/23 had my first appointment with the gynaecologist, had an ultrasound

10/23 I had a hycosy scan (to check blocked tubes)

02/24 referred from Forth Valley to Ninewells

07/24 amh test then results came 2 weeks later

08/24 appointment with consultant

10/24 IVF starting 🤞

I was told 1 year from referral (from forth valley to ninewells) but it’s only been 7. At each stage the waiting list has been much shorter than I was told. However, it’s been a long process and a long time to feel like your life is in limbo.

If I knew what I know now, I’d get a blood test to check for immunisation for Measles/ Rubella, I couldn’t get my referral until I’d had it, which was over Xmas and it pushed everything back a wee bit.

Also, I had issues booking my HyCoSy scan in. There was staff on holiday, so it was pushed back an extra month.

I hope that’s helpful and let me know if there’s anything else you want to know. 💛

Hi @Hep1989,

Thank you, that is so useful to know!!!!! I can't believe how naive I was going into this process, but that feels like what you say here is by far the clearest information I have got from anyone!

So far things I regret definitely include not being more explicit about when I came off the pill with my GP - I had already been off it (just not trying like rabbits 😂) for at least a year, so I just I could have skipped that whole first year of waiting entirely.

If I follow your time scale then it looks like I could expect my hycosy around this Christmas/new year, and expect to start treatment a year from then. So time scale wise from officially trying = roughly 3.5 years until beginning of treatment. Definitely not the 1 year I thought it was.

So MMR test to get in advance - do you reckon theres any point in getting an AMH test privately too? Maybe its something that the NHS will recognise. (I guess I should ask my GP)

Huge congratulations on getting this far on the list - I really hope it goes well for you! ❤

Thanks so much again, I realise appreciate your clarity and it brings the whole timeline into perspective.

xxx

I was the same, the endless waiting for the next thing without being told how long the whole process will actually take. Messed with my head so much! I guess the issue is if they find something wrong it may push you into different treatments and timelines. So I understand the vagueness, but it doesn’t make it easier when everyone around you seems to get pregnant so easily.

How old are you? If you are <38ish you should be offered 3 rounds (I’ve got a friend who is 39 and was only offered 1 because chances are once she’s had the round she will be over 40). I’m 34 so for me it’s worth just waiting to get the 3 rounds.

The Amh test is a tricky one. A friend did one a few years ago and it was basically a marketing tool to try and get her to freeze her eggs. And I’ve seen stuff on here saying the ones you do at home aren’t necessarily the best. Also, if the results come back low would that make the wait more stressful? Amh does change and it doesn’t reflect the quality of the eggs.

I went to my GP and had a blood test and Mot. My iron levels and vitamin d was a bit low, so I’ve added some supplements. That was helpful to feel like I was doing something! I’d also recommend reading (or reading a ChatGPT summary) of it starts with the egg. However, it’s a mental tightrope of doing things to feel like you’re giving yourself the best chance and actually living your life. I didn’t book holidays/ buy clothes/ apply for jobs because I thought I might be pregnant, I wish I’d just got on with it and not lived in limbo. But maybe that’s easier said than done! 💛

Just had my hycosy today which went well. Here's hoping that a year from now things will be happening. Im 37 so have fingers crossed for 3 rounds.

Hope you have started treatment without a hitch and things are going okay

xxx

Hey @foxlife , just to say, I'm with Glasgow royal and wow, there were so many delays en route to first treatment. I thought the same about the waiting time and when I expected treatment. A lot longer than they said. The waiting itself but unexpected things (a bad smear that led to an op that led to severe haemorrhage, and a 6 month wait for a "test of cure".

The good news is, once you get going, you get going. I was 37 when we started waiting. I'm 39 now, and on round 2 currently. I only made three eggs on max drugs (the cutoff for funding is anything less than three) so this will very likely be my last round. Just got to try despite low hopes, and trying to keep my chin up.

Have you had your consultation yet? You're apparently way more fertile after hycosy (anecdotal) because the tubes are all clear 🤷 Good luck :)

@Nosejug Sorry I don't know how I missed your post! How did your second round go in the end? A friend of mine just had an unsuccessful round of IVF privately, and I think they are pretty stressed about what to do from there. It's really confusing too if each partner has a different view on other options. I'm thinking of you!

This is how my timeline has worked out so far (for anyone else interested in the Glasgow Royal Infirmary wait times):

• Sept 22 - officially started trying
• Sept 23 - put on IVF waiting list by GP
• June 24 - first phone consultation with Glasgow Royal Infirmary & put on waiting list for hycosy test
• Nov 24 - hycosy test
• Dec 24 - went for second MMR jab (booked in by myself)
• Jan 25 - phone call doctors appointment (was offered Feb but rang up and got a cancelled one)
• June 25 - link to online consent forms sent
• July 25 - Nurse appointment at Glasgow Royal Infirmary, including bloods taken to decide on treatment
• Aug 25 - upcoming online appointment to discuss the treatment offered

It seems after this next appointment there will be a little delay again, so I am assuming that the first round might take place sometime between October-Christmas... but who knows! Sometimes it feels like you are literally going infertile while waiting - maybe this is the modern equivalent of watching paint dry

Oh wow. When it’s written out like that… I felt dread reading the months go by. Funny, I think we started trying around Jan 22 (at age 36) so our timelines are similar. Did you get your amh result? One positive about having low amh was that unlike other protocols, being on the highest doses meant less competition for a treatment spot, so I always got my cycle booked in first time. Well done on calling them back for a cancelled appointment. I didn’t realise that was a thing till round 2. I’ve had another spontaneous pregnancy (and another miscarriage) since last writing, and another round of ivf. Which is quite a lot for 6 months! That round I was in before I only got one egg, so my third round was self funded and different protocol, and I got 5 eggs. So weird how the numbers can change so dramatically. (From 1-5 is dramatic to me but I realise others get 30 hah). Sorry to hear about the further delays. So you get your protocol in August?

some of the nurses at gr were so nice, I wish I had them with me in every treatment. We’d have a laugh when I wasn’t crying hah.

I’m pretty sure once you get your treatment plan you can call in for treatment at next cycle?

@Nosejug No I think 1-5 sounds like a big difference! Do you have any idea what caused the change, like doing anything different?

On my appointment on 25 Aug I found out I had an amh of 4.5, and will be on long-protocol 9. Ironically I started my period that day too but they didn't have space for me. I am now booked in for the injection on 22 September. I totally didn't think about the long-protocols having less competition though! To be honest I'm not feeling hugely positive about it working so I think I have to find a way to somehow have to get myself in the zone.

I'm sorry you had to go self funded last time. Did you find the experience different? Sounds like you've been on quite a ride, especially in such a short time. That's pretty cool that you had a spontaneous pregnancy though. I'm so sorry the little one didn't make it.

@Nosejug I just had my first round on NHS and I only had four follicles, and one egg, which made it to an 8c 4/4 embryo on day 3, but didn't make the 2 week wait.

I think I will have to look into going private now, as with just one egg there's not much hope. Did you stick with Royal Infirmary when you did? I heard that people who don't respond well to high doses of IVF stims sometimes get on better with IUI - do you have any experience with that?

I hope your journey is going okay xxx

Hey @foxlife sorry I didn’t reply to your message before this one. It feels like years ago somehow that that round was underway. Unfortunately none of the 5 made it to blast, though I consistently get good quality day 3s, I have very poor blast conversion. It’s been suggested by some that can be due to male dna fragmentation but the blame seems to rest more strongly on my age (now 39).
We went for a 3 cycle package at create. We ended up having two cancelled cycles within that so it ended up being 5 rounds, just two were cancelled before egg collection (one on the day of!) luckily you don’t get charged for a round unless egg collection takes place.

anyway, round 2 was 4 eggs, again great day threes no blasts. I had a day 3 put back (considering the previous round I wanted to give one a shot) but it failed. The last round we’d actually started contacting other clinics to start the donor egg process as I had very low faith in my eggs by that point. In our last round we tried a low stim cycle just to do something differently and got a high grade blast (4AB) that’s now an 8 week pregnancy, scan on Thursday so I’m keeping my feelings as neutral as I can to avoid being crushed (again). I dont know for sure if the low stims helped or if it just so happened to be a good sperm and a good egg (we both started eating meat again to vastly increase protein intake as it turned out I had a deficiency despite eating balanced veggie diet, so I’ll always wonder if that helped too, as we began 3 months before that round and as I’m sure you know if takes three months to make the egg and sperm.

so high stims ivf gave me the fewest eggs, mild stims gave me the most but poorest quality (one nhs round made a blast but I was also 2 years younger) and low stims gave me one egg, which made a pregnancy.

god sorry I’ve rambled on! I’d edit down but I need to go to sleep!

Oh wow what a journey - I'm sorry the high stims weren't getting much for you, and the 3 cycle package sounds wild, but absolutely amazing that the lower stims might be working. I'm crossing everything for you! Yes definitely sleep, lots of love 💜😴 xxx