Infertility investigations/IVF in Scotland - thread 2

[Kitekat81]

A thread for those who are undergoing infertility investigations / IVF in Scotland 🙂

@LabradorMum I used to take them both one after the other, both at the same side 😶 I did get itchy a lot so that might be why. Almost every night I forgot to take it out of the fridge before I had to do it.

Thanks @pixelflower, I know she said different sides but didn’t say whether to take together, it’s all a bit rushed eh. Would be easier if the injections were just made up and ready to go too eh lol!

@LabradorMum I felt so bad for the nurse at my baseline. She was obviously stressed and under time pressure but trying to hide it. Must be hard for them knowing people are waiting outside. I do wish they gave out instructions with the medication.

@pixelflower that’s a shame I didn’t have that at all my appointment was really chilled the nurse was lovely. Yeah I agree I got a card to go to a website for full tutorial videos did you?

@LabradorMum no, I don't think I did. Glad your appointment was really chilled 😊

@LabradorMum I did both injections at the same time when it came to it. I also did them both on the same side, just not in the exact same spot of course. I alternated sides each day, although I wasn't told to do that I just did it.

First night of cetrolix I had a little raised bump and a rash that lasted about 30/40 minutes then went away. Same next night but not as long as it stopped being as bad after each night. Very itchy the first two nights too ha.

I did mine at 7pm each night. One after the other. I know I said earlier I did gonal f last but I looked back at my video and I did gonal first when it came to doing both and then cetrolix second.

How is everyone today?
I got a letter in today for a follow up appointment with the clinic on 24th a March. I'm a bit confused as to what it's about/why because I'm technically still doing my first round and just waiting to start FET. Does anyone else know if this is normal?
I'm gonna phone on Monday just to check

@willithappen That's confusing. Is it in the clinic? Do you have meds that you'd need for FET?

I saw my my mum today and she was obviously a little on edge until I told her I don't know if it's worked yet 🤦🤣 I should have lied and given her a date rather than just not telling her the test date. Keep telling myself there's a reason that the clinic say to wait to test so need to wait.

Hi @willithappen, maybe it will be a video consultation just to see how things are progressing and that you are ok with everything or maybe a scan 🤷🏼‍♀️. It’s nerve wracking not knowing though eh.

@pixelflower lol, I deliberately never told my mum, she has no grandkids and I don’t want to get her hopes up.

First injection done at 8, it was totally fine think you just build it up in your head to be worse than it is eh!! Although I think mixing the powder etc will be a mare!!

@LabradorMum well done ☺️Keep saying this but.... exciting!

Thanks @pixelflower a little stingy think I stabbed my self a bit too much but apart from that it was ok 😁 Just have to keep going and grow those follicles lol!!

@pixelflower @LabradorMum it's a video one yeah. Just strange as no one mentioned it at all and I have been told all the next steps.
It says in the letter it's to discuss our treatment. Sort of sounds like a letter you get after a failed round.
It says if we don't make the appointment or cancel with less than ten days until it then we lose our place on NHS waiting list. Really confusing :/

The mixing of the needle was really daunting to me but it's actually not bad. Get a YouTube video up before and watch it all. Hardest bit for me sometimes was getting the larger needle back off ha

Morning ladies.

Well done @Labradormum

Just wondering- does anyone have experience of having acupuncture during treatment and if so did it help?

Thought I'd post here in case anyone can advise...

We had some investigations done privately with GCRM. But now the NHS clinic is refusing to accept the results and say we need to have the tests repeated with their clinic. They wouldn't even look at the results. The tests were all done within the last 2-3 months, so it's not like they're out of date. I work in healthcare and I've never encountered a specialty refusing to accept investigations from other clinics before - I accept privately done investigations regularly.

The "acceptable" paperwork also seems really confusing - eg copies of lab-verified antibody titres are given less weight that the wording of one line in a GP record (one of my childhood vaccinations was recorded incorrectly on the GP system, and despite antibody titres, Occupational Health clearances and copies of the original vaccination record, the only thing that was considered acceptable was for me to get re-vaccinated so that a new entry could be added to the GP electronic summary).

Just feeling really frustrated and confused. Streamlining this process could save so much time and resources...

How's everyone doing today?

@Kamiros I haven't had during treatment but did have before. Stopped because of the cost and having to do an 80 mile round trip to go.

@Scirocco that's incredibly frustrating! Who at the clinic isn't accepting the results? Is the the possibility of talking to someone else about them?

Apparently it's "clinic policy". Has anyone else had this happen?

Hi @Scirocco, is it blood test results they're refusing to take from GCRM? I'm having NHS cycles at EFREC, but I did look at GCRM before we started our treatment 2 years ago. I noticed that some of their lab tests aren't accredited by something called UKAS, which all NHS clinics insist upon (the department of health makes them - it's not them being awkward!). It put me off using them because if some tests aren't UKAS accredited then that means they aren't meeting a set quality standard for that test. Doesn't stop them from selling them to us though (which makes me mad!). It could be why your NHS clinic might not take the results. Sorry to hear you might have to repeat some investigations 😔

@BambiOnIce80, all the tests I've asked them to look at have met the same accreditation standards as the NHS clinics use, so it's not that.

@Scirocco

Thought I'd post here in case anyone can advise...

We had some investigations done privately with GCRM. But now the NHS clinic is refusing to accept the results and say we need to have the tests repeated with their clinic. They wouldn't even look at the results. The tests were all done within the last 2-3 months, so it's not like they're out of date. I work in healthcare and I've never encountered a specialty refusing to accept investigations from other clinics before - I accept privately done investigations regularly.

The "acceptable" paperwork also seems really confusing - eg copies of lab-verified antibody titres are given less weight that the wording of one line in a GP record (one of my childhood vaccinations was recorded incorrectly on the GP system, and despite antibody titres, Occupational Health clearances and copies of the original vaccination record, the only thing that was considered acceptable was for me to get re-vaccinated so that a new entry could be added to the GP electronic summary).

Just feeling really frustrated and confused. Streamlining this process could save so much time and resources...

That seems absolutely mental and backwards! Yet I'm not altogether surprised...

We've just left GCRM as we're now at the top of NHS waiting list.

I took all my notes from our two failed rounds at GCRM to my NHS appointment. I explained about what we had had etc and that I didn't want to be put on the same protocol as before.

She stated "we just go by your amh blood test"

And I explained again about our two failed cycles.

She said we will be given a protocol and at that stage if it's the same as what I've done before I can ask for it to be changed.

Just seems like a waste of time if they initially give me a protocol ive used when I've already told them I'm not doing the same for my third cycle!

X

@unknownscot that sounds so frustrating; you really would think they'd take past history into consideration, particularly when (like it sounds for both of us) there's information in that history that's directly relevant to treatment planning!

@Scirocco that does sound so frustrating! So you'll need to go through all that again before being added to the waiting list?

Hello @PinkFlamingoGirl! Hopefully you'll get your appointment through soon. We started at Monklands too and when we got through tests etc we then got referred to the royal for more of the same, before being added to their waiting list. It all takes so much time! Monklands only offer IUI I think and not IVF or ICSI.

@itsmschanandlerbong I'm already on the waiting list, but they're wanting to do these tests again before any treatment. While they helpfully ignore the results which already tell them an issue exists. I really hope they listen to me/read the results before expecting me to use up one of my NHS cycles - the chances of success are about 50% of the usual success rates without intervention/support, so it feels like it would be a waste of NHS resources to plough ahead blindly.

@Scirocco aaah that's so frustrating! Are you nearing the top of the list? Have they said how long the results will take?

Their estimate of when treatment could start is still "October-ish". So over 18 months since the appointment where they said they'd add me to the list...

None of the tests they want to do should be too lengthy, but I think they're missing the information right in front of them. The next steps should probably be looking at immune response and facilitating implantation, rather than the kind of "one size fits all" approach they seem to be using. But they haven't given any credence to the investigations that highlight those areas and insist we're still "unexplained".

I'm tempted to go back to GCRM or to look into one of the immunology specialists in England. Sorry for being so negative today, just feeling really frustrated and powerless.