help...time off work for ivf? your experience with nhs?

[frustratedchick]

hello hello,

I am starting a new job soon and also planning to do my first ivf (at the same time...) and keen to know from you how much time off work I will really need to take.

I have two options it seems - a long protocol with the argc (expensive, long, but more chance of success) and a short protocol with the NHS. Now, my decision will be influenced by different factors - which one can I do first (the quicker, the better - we have been ttcing for 2 yrs), one is free and one is ca 10k and how much time they will take out of work...Its already annoying that they ask me to do different protocols.

Have any of you done short protocol with the NHS? The hospital is Chelsea and Westminster. How many times do they ask you to come to the hospital and when? I know the ARGC is heavy on appointments - daily bloods, IVig drip, hysteroscopy etc.

THANK you. As you can probably tell, I am stressed.

(me -33, DH - 34. Unexplained infertility but high nk cells)

[FlipFantasia]

Hello

It seems really odd that there's such a difference in protocols between the two. Short protocol is generally only used where a poor ovarian response is suspected (or may have happened in an earlier cycle where long protocol was used). I'm assuming you've had things like FSH and AMH tested - what were the results like?

I had ICSI - long protocol - and during stims the clinic (the Lister) scheduled scans & bloodtests for first thing in the morning (was usually out of the clinic not long past 8am), so they had minimal impact on my working day. For egg collection, you do need to take that day off and, generally, a few days after (depending on how painful you find it). I ended up taking over a week from egg collection, until a couple of days after embryo transfer (blastocyst - so day 5) but my work knew I was doing IVF and were v understanding.

I have no experience of the NHS or the ARGC, other than knowing that the ARGC is full on but has tremendous success rates particularly with things like NK cells (I didn't know that NK cells were treated on the NHS as part of IVF!). But you could check out the Assisted Conception thread - there are several women who's had successful treatment at ARGC or are embarking on treatment there at the moment who would be much better placed to tell you about it.

When we were looking at clinics I didn't want to wait for the NHS, as I felt we had waited long enough (also 2+ years ttc but our issue was male factor - low sperm count) so didn't look at any NHS clinics. Success rates were one of my biggest influencing factors, as I really wanted to do all I could to maximise our chance of success. Then it was the feel for the clinic, how comfortable we felt there, as well as ease of getting there/to work via the tube.

Good luck with your decision - it's stressful, but I found it a lot less stressful than relentlessly ttc without success!

[frustratedchick]

Thank you flip. Thats very helpful. I was so puzzled by the difference in protocols. I have very high antimullerian hormone - that means I am more prone to overstimulation. The NHS says that it would be best for me to do the short protocol to avoid this - but the ARCG says that they are only doing this because they dont want to take any responsibility (they wont monitor me as well as the ARGC and would prefer risking failure than overstimulation).

So I am in two minds really...the NHS has the benefit of being shorter and free.. but...

Were you successful with your ivf - if you dont mind me asking? how many eggs did they retrieve?

[BagofHolly]

GO TO ARGC. it's the fastest way to have a baby, because their success rates are soooo high. Your NHS cycle might work but who is going to manage your NKs? I can't imagine many things more heartbreaking than getting pregnant and then losing it because your NKs have gone wild during pregnancy. Argc manage your pregnancy till 12 weeks whereas I'm almost sure youre just waved off once you're pregnant, at most NHS places.

The treatment at Argc is full on - you'll need to write off about three weeks' worth of mornings at the very least but with such a high success rate it's worth it IMO! As for time off, at my company they give paid sick leave for IVF after a colleague complained that it was discriminatory not to, because a man would not be in the same position.

We bypassed our NHS goes for Argc by the way, because we knew we wanted more than one child (I was 37 when we started) and by bringing in the big guns early, it gave us time for a second cycle after our son was born. So I had 2 cycles there in 2 years and have three children - second pregnancy was twins!
Good luck!

[FlipFantasia]

That sounds quite odd (not to second guess doctors or anything!). I thought OHSS was due to the level of stimulating drugs given, or rather your individual response to the stim drugs, rather than the length of protocol - the short protocol doesn't "switch off" the ovaries during down-regulation (which kind of induces a false, temporary menopause) so it avoids the risk that the ovaries don't switch back on during stimulation, hence why it's better for women with low AMH/poor ovarian response...

Certainly, monitoring is vital to make sure OHSS is avoided and if you think there may be too little monitoring then that would definitely have influenced me.

I was successful with my first round - they collected 11 eggs after about 9 days of stimulation - I egg shared, so I got 6 and the donee got 5. Of my 6, 5 fertilised but one fertilsed poorly. Of the 4 left, we got to blastocyst and I had two blasts transferred (I was very blase about the risk of twins - i think if we were to do it again I'd only have one blast transferred!). I was 31 btw and had good hormone levels - AMH was about 22, so not massively high but about right for my age - very high antral follicle count (which put me at a higher risk of OHSS), and low sperm count seemed to be our only issue.

I know that time/convenience can seem appealing, but also think about what it will be like to have to do it again. I really wanted to avoid having to do it again, even though I was egg sharing altruistically (I'd wanted to donate eggs altruistically since I was at uni but hadn't expected to have had problems having our family), so was more prepared than most probably. I decided that the embryologists were really important, and often over-looked part of the process, so rates of blastocyst were one of the things I considered too.

NK cells will make your treatment trickier, as you'll need the relevant drugs for longer than most, so it may be worth going for the expertise of the ARGC over the apparent convenience of the NHS...or you could decide to try the NHS one, see how it goes and use the ARGC as a fall-back! The money is definitely a factor too!

[frustratedchick]

Wow, bagofholly. Thats amazing! Congratulations on your three kids!

Yes my NK cells seem to be high but I keep hearing that there is no evidence that they are really a massive factor in infertility (I have never been pregnant - doesnt implant for some reason). But I am 90% convinced that I should just go for ARGC - as you say, to maximise the chances.

When you say you write off three weeks...They told me that 7 days will be nasal spray (dont need to see them for that), then on day 5-6 I need to start blood tests (every morning for two weeks but I can be out by 8.30am) and scans (every other morning - does that take long?). I will then need a day off for hysteroscopy and ivig drip if I need it. But I was under the impression that those two weeks were broadly manageable without work finding out?

Then injection, one day off and then ER (at least 2 days off) followed by ET 2-5 days after. I suspect I will need quite a few days off there.

What do you think? Does that relate to your experience? I cant really tell my boss because its a new job I havent started yet!

[BagofHolly]

www.argc.co.uk/statistics.html

Check our Chelsea and Westminster stats - they're half what argc's are.

Re ohss - they scan your ovaries daily during stims and then titrate your drugs dose that day, and ring you each evening. They have hardly any issues with ohss as a result - you're watched like a hawk. In both cycles of mine they scanned me twice daily the last few days to make sure my ovaries were optimally stimulated, and then rang me to tell me when to trigger. That's why they're open 365 days a year. Whereas my NHS place started by saying "well we do egg collection on a Thursday..." One size fits all! Yuk!

[frustratedchick]

Thanks Flip. Congrats on your success with ivf. encouraging!

To be honest, I think the NHS is worried that if they put me on a long protocol they wouldnt be able to monitor me properly and I may end up with OHSS. hence their suggestion to go for the short one. My AMH is 46!

9 days of stimulation is not very long - wow, I thought it would be about 2 weeks. But I suspect it depends on how you respond.

aRGC told me they would need to repeat some of my immune tests while doing treatment to find the best way to lower some of the values - some are borderline and one very high, which could possibly explain lack of implantation for 2 years...

Thank you

[frustratedchick]

BagofHolly... Yes I have seen the stats, they are pretty low for Chelsea and Westminster. I assume ARGC do EC and ET also on Sundays if thats needed?

[BagofHolly]

I think you'll need a lot of flexibility. I wrote off the time because I had to commute from near Cambridge. If you work nearby I suppose it's doable. Most days I was all done for 10am Inc scans but it's the ivig which can be unpredictable. So so worth it though! They ask you to come in every other day for 10 days post BFP to make sure your HCG rises well. That was invaluable - mine was a v v v low start (29) but they whacked me full of steroids on the spot (literally, the nurse was standing in reception with them in her hand, with a glass of water, have rang me to say come in NOW!) and my HCG shot up. I'd already started spotting! The result is shouting "bottom burp" upstairs at me!

[FlipFantasia]

BOH am glad you appeared - I often think of you when I see people asking about ARGC as you're like the poster girl for its success!

Frustrated I know practically nothing, but I think NK cells are definitely a factor in implantation & MC. If you check out some of the repeat MC ttc threads on here and you'll find women being treated for high NK cells due to previous MCs, I think there's one called "ttc on prednisolene or similar".

[BagofHolly]

Yes, theyre open every single day, sun, rain or snow!

[BagofHolly]

"postergirl"

[FlipFantasia]

Frustrated, ARGC would definitely do EC and ET on a sunday - the lister did and I had my own ET on a Sunday. I'd be v suspicious of any clinic that didn't (which is certainly a downside of the NHS).

[FlipFantasia]

BOH

[BagofHolly]

Have you read "is my body baby friendly?" by Alan Beer? It's v good for explaining it all and is good to refer to if you want to obsess over your results, as I did!

[frustratedchick]

I will order it straight away. I have been trying not to obsess too much about pregnancy in the last few months (the first year and a half was awful and all i could think about). But now that we are approaching ivf I am a lot more anxious! sounds like my kind of book! Thanks both