Lack of Information

bibby · Post by **bibby** » Tue Oct 29, 2002 8:49 pm

I'm going through my first ICSI/IVF cycle at the moment (on day 5 of stims) and I am getting absolutely no information about my progress at all - is this happening to anyone else? I go for daily blood tests, ring up in the afternoon to be told to reduce my dose every day but no reason why. No-one has ever during the course of my treatments/investigations mentioned my FSH levels, or a possible date for e/c, etc. I feel terrible asking as the nurses seem to give the impression of "do as your told" - maybe I need to be more foreceful? Any advice appreciated - am I a wimp? Bibby

pru · Post by **pru** » Tue Oct 29, 2002 9:23 pm

That is definitley not supposed to be like that. They are supposed to let you know every step of the way what is going on. If not make sure you ask enough questions. I don't know if this is a private clinic but if it is, that's even worse. I had to reduce my dose cos I was over respondinfg to the drugs which could be quite fatal. So my advice for you would be to ring the clinic and discuss any questions or doubts you have and don't take no for an answer, after all it is your body.

Alison · Post by **Alison** » Tue Oct 29, 2002 11:00 pm

Hi Bibby - like you I sometimes find it hard to get some information. I don't think either friends or colleagues would say I'm unassertive, but there's something quite tricky about trying to start a conversation while he's got his probe up, well you know...! and shouted questions from behind the screen when you're struggling back into your tights isn't always the easiest either! At my clinic they let you wait with your file and I think that's quite useful for looking at things. On your specifics, with FSH I'm sure they'd have tested that at the beginning (day 2ish?) and/or before you started on treatment, so if it was OK then they probably won't test it again and you needn't worry. On the day of e/c and e/t, if they're monitoring you every day they may not want to commit to an exact day as it'll depend on how you're responding to the drugs, but if you've been in a few times they should be able to give you a rough date. And I agree with Pru that they should explain why they are reducing the dose. I think though you said you started on a very high dose (450?) - so it is possible that as you've started responding they've reduced it. A couple of times when my dh has complained (to me) about lack of information I've asked him to come with me so he can ask the questions (at least he gets to keep his underwear on!) but he tends to be worse than me at asking things! Hope this helps. Keep in touch with your progress (I'm on day 2 of stims and go back on Thursday). Alison

fiona_lk · Post by **fiona_lk** » Wed Oct 30, 2002 9:43 am

Hi Bibby, Doesn't sound like MFS - so are you at Care or St Mary's? This was what was explained at MFS to me. When you start stims, your ovaries have completely packed in from the down-regging so the stim drugs are in control of your cycle. In the first few days of stimming, follicles are 'recruited'. On a normal cycle, this is usually only one follicle, but in IVF, it depends how you respond to the drugs. The number of recruited follicles then doesn't increase (although they could have missed a few on the first scan) and these all grow together - hopefully at the same rate, but not always. I ended up with 8 follicles ranging in size from 10mm to 20mm but only 5 eggs were collected (remember not every follicle may contain an egg or one which is suitable for IVF/ICSI - but most do). So, once the recruiting has happened, the drugs are continued to make sure that the follicles grow at a steady rate - the reason for reducing the dose is so that they don't grow enormous (it can get uncomfortable with just a few biggies). Also, (I think - and this is where I get a bit fuzzy) the more oestrogen you produce yourself, the less drugs you need and if they continue to give you too much stims, you would be at risk of OHSS. E/c is normally sheduled for when the 3 largest follicles are between 16 - 20mm in IVF, with ICSI they sometimes wait a bit longer. No one can predict when this will be. However, some clinics schedule people in and then have them 'coast' - so give little, if any, drugs to get them to the date they want the e/c to happen. This is turning into a real essay, so I'd better stop. Hope this helps some of your worries, but you shouldn't be afraid to ask your clinic anything. Lots of Love Fiona xx

Nic · Post by **Nic** » Wed Oct 30, 2002 10:30 am

You are right in saying that the more oestrogen you produce, the drugs need to be reduced so that your levels are at a safe level ready for ec, otherwise OHSS is a risk. I was coasted for a few days, and was told the night before that I would be going in for ec, as they were waiting on blood test results based on my oestrogen levels. You should ask your clinic anything you need to know, and get them to explain everything until you are happy that you understand it - it's really important that you're kept in the picture, and don't let them shrug you off as if it's not important, or that they know what they are doing.

bibby · Post by **bibby** » Wed Oct 30, 2002 9:52 pm

Thanks all for your replies. I'm going to start asking some questions!!! Fiona - it is St Mary's I am at, I just don't seem to be getting told anything. I'm sure my e/c must be next week but noone has given me even an estimated date - time to start getting assertive... luv bibby