Assisted Conception and the bits inbetween

[soosy]

Welcome to the new thread I only hope I can link it to the old one

Hi Lottie,

Thanks for your message - I have had a look on FF, but there is such a strong community there that the info is often hidden amongst lots of general chat. Good idea to post a thread though, and see what comes.

My consultant said he thought that Barts might not be happy with me going private whilst on the waiting list - but I would have thought that would be down to my PCT, rather than the individual hospital.

It is possible that he was using this as an excuse to deter me from insisting on being treated at Bart's, though!

Hi ChoChoSan,

I am at Homerton (as a NHS patient). Although at times the NHS 'attitude' can be annoying, I have found the Dr's to be very good, and the nurses are generally okay. Also, the 'waiting times' between appointments are quite long - but this may be different if you are a private patient.

Hi Sooty,

Thanks for your post, and good luck with your treatment.

So far I too have found the hospital staff to be friendly and pretty efficient, although I was a bit bemused as to why I felt I was being deterred from Bart's.

The reason I may want to have some treatment privately is because I have been ttc for 3 years, with IVF as my only remaining option, having done my 6 months of Clomid etc. The chances of me conceiving will diminish significantly as I am lolling around on the NHS waiting list, so at least I will feel as though I am doing something positive by having private treatment in the meantime, rather than just waiting for anything from 1.5 - 3 years, by all accounts, to get on the waiting list, by which time I will be that much older!

Hi ChoCho - sorry to hear you are stuck in this position. I'd second the advice you've been given - my old PCT would not fund IVF if you had paid for treatment privately, successful or not. In the event, we decided to go ahead privately as we felt that every month counted and were very lucky in that the first cycle worked. The referral for the NHS treatment came through when I was 19 weeks pregnant, so we would have been at least 8 or 9 months later in trying if we had waited for the NHS.

We got the best information from the consultant's secretary regarding waiting lists etc - they are usually easier to get hold of than the consultant and know all the basics anyway - how many couples get to go on the waiting list each year, when the funding is allocated so that people can start being treated etc. Maybe worth a few calls to see how long the waiting time could actually be for?

And Swerve so very very pleased for you, delighted in fact. Wishing you a relaxed and happy pregnancy!

I'm just back from a holiday in Scotland, hence the silence on my part. Came back to the invoice for my current cycle from my clinic, looked at it and thought it was a bit high as I was expecting them to deduct the freezing fee I'd paid last time (but had nothing to freeze so it should have been refunded to my account). Such a bonus, not only had they not deducted it, but they had overlooked it last time too, so I get £800 off the current round of costs! Very happy about that, trust me.

Anyway, in midst of downregging on the pill. Baseline scan is mid Oct, so no news until then I suppose. The thing about downregging on the pill is that I forget I'm doing it and so IVF doesn't start in my mind till I start stimulating.

ChoChoSan you may be able to self fund on NHS, I am at Chelsea and Westminster and you can pay for NHS treatment, slightly less than private, whilst waiting for funding.

Congrats Swerve, really pleased to hear your news!

Appointment on Fri ....

OAP, glad to hear you actually got some money back from them! Good luck with everything.

Love to everyone else.

S x

Hi Lottie,

I posted a copy of my original question on Ff website, and have had a good response from the folks at FF - so to me!

I have also had a very good response from my consultant's secretary. She said I will not be disqualified from NHS treatment, and that the waiting list at Barts is only 12 - 14 weeks long, so hooray! With a waiting list like that, I think I'll save my private IVF savings until I've used up all my NHS gos!

Hi all

Hope everyone is well.

Just a quick question. I have got my consultants appointment tomorrow at my clinic. There has been some discussion with my GP that steroids might be a good way forward. They are widely used in the USA, in fact my SIL sister is on them for M/C and she is now 22 weeks.
Does anyone else have steroids on their treatment plan for when they conceive? Apparently you need to take them from ovulation. Anyone got any feedback on their use?

Thanks guys... XX

rahrah, I'm on steroids. and IVIGs. There was some new research published - www.timesonline.co.uk/tol/news/uk/science/article4720133.ece

Hello everyone

Well, I was CD1 on Monday, so started taking the pill yesterday. I guess i have officially begun my first IVF cycle!! Now i have, i feel that i can start hanging out with you lot "properly" now. So i'm off to read the past few days / weeks posts, to hopefully catch up with what everyone is up to.

MOB XX

Hello Madoldbird.... WELCOME to official..dom...

swerve - thanks for the info... which clinic do you go to? what are IVIGs?
Thanks XX

OMG - just read the article... I wonder if these killer cells are what makes you bleed so much? In all my pregnancies (had 3 so far) and spent 4 yrs conceiving) It talks about extra blood vessels etc... amazing...

Do you mind me asking why they have put you on steroids?

Rah Rah the theory is that your body overreacts to the embryo and tries to destroy it as it is does not recognise it, as it trying to protect itself. It is one of the things I want to discuss with my Consultant on Friday, as I have only 2 attempts left and I don't really want to change clinics. As I am sure it is not the clinic's fault that I am not getting pregnant. I'll let you know what he says!

Madoldbird LOL at being officially with us. I feel a fraud as I am taking so long between treatment and not entirely sure when (or even if somedays) I will next have treatment.

OAP Hope you are well

Swerve, Do you continue steroids until 12 weeks or the whole way through?

Love to everyone else

Sx

Hi all.

Welcome MadOldBird to the wonderful rollercoaster of IVF.

Had first scan today and the follicles are growing away which is good, mainly on the right though. It looks like a nice bunch of 7 are in the lead with another 4 a day or so behind, so we will not know until Friday when they want to collect. Fingers crossed for a good harvest.

Waves to all.

lottie hope consultation was good.

Welcome Madoldbird. It's a hard road but one worth travelling, I believe, whatever the outcome.

Rah Rah, I'm on steroids and ivig (IV immunoglobulin transfusions) to counteract my killer cell activity. I'm no scientist and this bit gets beyond me. I take steroids for the first trimester + 3 ivigs (one just at egg collection, one on friday and one towards the end of the trimester. It's controversial treatment but it's where lot of the research is going now. and it worked for me. I had it on my 4th harvest, 2 years ago (result dd). So, despite 2 failures earlier this year we are sticking with the regime and, well, fingers crossed. but I'm pregnant for the 2nd time in my life. Whether its this or the fact that both times I've got pregnant has been when I have not been working (or been able to take time off) - I can't say. I hope it's the science because giving up work is just not an option for most (me included) - the timing between changing jobs has worked out that way.

Nappy, glad to hear those follicles are growing. keep watering them!

LL, glad to hear Guy's were positive. It's important you feel your drs are supportive of you.

Lottie - I know it's wrong, but I'm so pleased to see you over here. Probably not the way you'd really want to have to go, but at least I feel more at home with someone I "know" so well. So pleased your consultation went well - is that an NHS cycle then? Shame you couldn't turn the Norway visit into a holiday, but my DH is self-employed so I understand the cost implications of leaving the business for any time.

Nappy - what day of stimms was your first scan? I'm going for my second (day 8) tomorrow. Are you feeling that there is much going on? Occasionally I feel like someone is gently poking me under the diaghram (sp?), but I'm not getting the much warned of bloating - so now I'm worried nothing is happening. I also have no idea of timescale - just agreed to a 9am meeting next Thursday, no idea if that will be possible. (Work don't know about treatment- I was going to call in sick on collection day and take a couple of days holiday for transfer).

MOB - It's only been a week since I rang the clinic to say AF had arrived (managed not to use mumsnet euphemisms though ). So I am still feeling the excitement of joining this thread for real. Best of luck.

Rah - can't believe what you've been through. I do hope there is answer out there for you - and if there is that you can find a clinic to use it.

Thought I was being very chilled about this - but yesterday screwed up a couple of things big time at work that I have done plenty times before, and my skin has gone crap - the last time I looked this bad was the morning of my wedding . Thankfully that day it cleared up in the 30min taxi ride to the registry office.

Hi everyone,
As Soosy says the steroids stop your body attacking an embryo as 'foreign'. They seem to have a good body of evidence that they work but they give me insomnia (3am onwards) which isnt v nice - but is very common.. The ivig is the next step up from the steriods, but is more controversial in this country. There are only a couple of clinics here that use it (ARGC and one in Nottingham (is it Care?).

Ive been lurking for a while, and not quite sure what we are doing treatment-wise but I thought this is the best place for me ... not the 'Im planning a June/July baby threads' etc. We have just had another failed cycle - our 5th. Perhaps we will do one 'last one' in Nov/Dec. All unexplained infertility but likely to be a genetic incompatability between me and DH. We are thinking of donor and adoption options. A lot of difficult decisions. We have to wait 6 weeks for our followup consultation (despite being private) so not happy about that.

Good luck to you all!

LLottie - Am impressed with Guys (despite the wait). Hope it goes well.

Soosy - How has your house move gone? Has ds settled in his new school? What happened about the house in the end - I think you are renting? Are you happy to be out of London?

Swerve - Congrats! Great news. Fingers crossed for you in the coming weeks.

lottie so glad appointment went well. Our initial appointment was on 8 August and then when my next period came we booked in for our Day19 set up which was 8 Sept, which is the day I started injections. It all happens so fast after 2 years of wandering the wilderness it can seem a bit of a shock to the system. Glad you get some NHS help though.

So now we are looking at next week as egg recovery and transfer. I am having the whole week off, even though self-employed so that I don't let people down by cancelling at the last minute. And have booked DS into preschool all day, all week too!!!

rattling scan on wed was Day 8 on their timetable, but I had to take 1st stim injection the night before day 1!! I am a bit bloated, slightly tender breasts and very tired on the first 5 days. Will find out tomorrow if egg collection will be monday or not. So we are going to be 2ww together it looks like. Nice not to be alone!

sorry rattling - that being a little over optimistic, and is assuming there are eggs, that they do fertilise and then grow big enough to go back in. I don't like to get too far ahead of myself.

Hi all

sorry swerve but more questions

Which clinic do you attend?

How did they diagnose you had killer cells?

I just want to rule it out for us or obviously rule it in. I went to my clinic yesterday and he was inclined not to give steroids as he said the treatment and diagnose is controversial. However he has prescribed heprin in my next pregnant from a positive test. I have PCO, bleeding in all pregnancies and no live children, have low platlets and abnormal IGa results which is an immune problem and yesterday was told have a below normal level of
Von Willebrand's, so my consultant is talking to a specialist. Just looked it up on the internet:

Symptoms

• Easy bruising
• Frequent nose bleeds
• Bleeding from wounds that takes longer than normal to stop
• Excessive bleeding when teeth fall out
• Heavy or prolonged periods
• Bleeding from the gut or bowel
• Bleeding into muscles and joints in more severe cases

No mention of pregnancy??? Anybody got any ideas. Anyone know of any of these drugs?

If medical treatment is necessary it may include:

• Desmopressin - a synthetic version of a natural hormone, which releases VWF from the lining of blood vessels
• Tranexamic acid and similar drugs - these drugs help to prevent clots being broken down once they've formed
• Thrombin - a natural clotting agent
• Concentrate of VWF and factor VIII - these compounds, derived from blood, are used in more serious VWD

(from the BBC website)

So to sum up I have now been prescribed IVF for next month, will start after have my period on day 21... Aspirin from now and Heparin from when I have a positive pregnancy test.

Anyone got any ideas?

Thanks Guys

Had my day 8 scan today - everything looks great. But like you Nappy, I'm trying to not get too excited. I have lots of follicles growing well and my lining (which for no reason at all I'd decided would be rubbish) is okay. But follicles don't mean eggs, or quality or fertilisation or implantation. As I keep trying to remind myself.

Looks like I'm going for egg collection on Wednesday. I have an important meeting on Thursday at 9am - how likely is it I'll feel up to it?

I'm on the Sep/Oct cycle buddies thread on FF - there is someone there doing ivig treatment, but think they may have gone to the States for that. She mentioned a horribly large amount of money she spent to get through her last pregnancy (though successful, so worth it). Hopefully if the treatment is now available over here it wouldn't be quite so pricey.

rahrah
They diagnose killer cells from a blood test.
I got a v good book from amazon that covers the immune stuff in detail - 'Is your body baby friendly' by Alan Beer.
Sorry but havent heard about von willebrand or the drugs you mention.
Prescribing heparin is good, but I would have thought that from transfer (or collection) would be best to give the embryo a chance. (This is what 2 clinics (UCH and ARGC) have given me in last 4 cycles). Aspirin is good.
HTH