Starting our private IVF journey - Unsure of process

(34 Posts)
Rememberallball Thu 20-Oct-16 13:05:20

This is my first time posting on this group. I've posted on the conception group before but stopped when I was getting disheartened with our failure to conceive naturally.

So we've been told that our only hope of a family together is donor egg IVF and that the issue is my age (will be 45 in a few weeks). Because of my age we have also been told our only avenue for treatment is down the private route with no assistance to pay for our treatment.

I had a pregnancy in 1998 and another 2007 but have no children as both pregnancies failed (first was anencephalic and second miscarried). Neither pregnancy were with DH. DH has 2 adult children with his first wife.

I have had bloods taken last year with the following results
March 2015
Progesterone <1 nmol/L -- non ovulatory cycle
Prolactin levels 142 miu/L (range 59.00-620.00 miu/L)
FSH 4.0 iu/L (range 2.5-10.2 iu/L)
LH 3.9 iu/L (range 1.9-12.5 iu/L)
Oestradiol. 572 pmol/L (range 72-530 pmol/L)
Testosterone <0.35 nmol/L (range 0.50-3.0 nmol/L)
Sex Hormone Binding Globulin 119.6 nmol/L (range 27.6-146 nmol/L)

GP decided they should be repeated just before my appointment with the gynaecologist and on cd2 and these were done in the July with the following results

FSH 6.4 iu/L
LH 7.1 iu/L
Oestradiol 255 pmol/L
Progesterone taken on cd21 was 26 nmol/L (range 20-30 nmol/L)

DH had SA done which was very good according to the GP.

Consultant requested AMH level which came back as 1.85 pmol/L which is not good and, according to her letter to our GP, indicated "very low fertility potential".

I have since noticed that, according to her letter to our GP, she had my blood results wrong (FSH as 11iu/L; LH as 8.4iu/L and oestradiol as 76 pmol/L) these are really very different to my results as taken by GP surgery but processed at the same laboratory so with the same equipment and same reference ranges and, apart from the AMH, I don't recall having any additional bloods done for their clinic.

Anyway, that's by the by.

Where I am now is at we have decided we are going to pay for 1 cycle of IVF and are looking into where we get information on clinics (UK and international), success rates (especially for older mothers), and cost of treatment. We also need to find out, if we do go abroad for treatment, what happens about pre treatment testing, medications and the like.

So I'm turning to you lovely ladies on this part of the site who have been there before me and can hold my hand and guide me through the process.

Thank you all in advance

SparrowSG Fri 21-Oct-16 10:16:39

Hi Rememberallball, I think you used to post in the same 40+ thread as me in the Conception boards. You may want to try to message Daisy from there as she (any time now I think) is having twins from a clinic in Cyprus with DE. I know she was very positive about her treatment there.

I can also highly recommend the clinic DH & I used in Athens earlier this year, AKESO. If you would like more information on that then please message me.

For UK clinics you can get all the stats from the HEFA site here: www.hfea.gov.uk/ for abroad it is best to do the usual Googling and also email/call/skype with the clinic. For me I wanted to visit after all the self research and as we went in January for a consultation it wasn't over expensive.

Pre-treatment abroad you can do quite easily, either you have private scans here, buy medications here and send results back to the clinic there and just go for collection/transfer or you could go for the whole duration (which I did as I am lucky enough to be able to work from anywhere).

For me, personally, I would never pay private to have IVF here. After going abroad and comparing this to my friends private treatment here I had a far superior experience for a lot less cost. Having said that I know many people have been happy and successful with clinics here in the UK, so I don't want to be too negative!

Please ask me anything you want, happy to tell you what I know.

Rememberallball Fri 21-Oct-16 15:31:07

Hi Sparrow, yes I did post on the 40+ threads on the Conception board. Thank you for taking the time to reply to me. If you could give me more information about the clinic you used that would be really useful; through extended family we have connections to Athens and I think they would be willing to help us out with things if we do go there. Also, if you could give me pointers to sites where I can compare clinics, that would be fabulous.

I will head over and look for Daisy and ask her about the Cyprus clinic she used.

It would be nice to join you folks on the success story pages of the group.

tonsiltennis Fri 21-Oct-16 16:11:27

Re private in the UK, there are a couple of clinics with excellent results with older women - ARGC and Lister in London.

If you're intending on using your own eggs then don't wait about obviously, but at 45, I'd be tempted to look at donor egg or donor embryo.

Good luck X

tonsiltennis Fri 21-Oct-16 16:12:15

Also FertilityFriends.co.uk was invaluable. X

Rememberallball Fri 21-Oct-16 17:01:36

Thanks Tonsiltennis, we have been advised to go for donor eggs; not sure how my DH would be about donor embryo as it took in time to reconcile to a donor egg success still being our baby without being mine genetically!

Thanks for advice on uk clinics to look at and also for recommending the fertility friends website. I used their cycle plotting facilities but never really looked at their forum!!

Blondeshavemorefun Sun 23-Oct-16 08:57:36

Def go abroad.
1) cheaper even with flights
2)their technology is far superior (I think) then U.K.
3) depending if you are telling anyone/your child about using de - in U.K. The child can find the donor when 18 - abroad 99% is totally annoymous and don't even need to have on medical notes

I'm 43 tho used own eggs as always told very good for my age. Had 2 private cycles in U.K. At the time I thought were good but hindsight didn't know any better

Once went abroad then reliese how crap uk was and df and I feel we wasted £12k

Took another 3 attempts and 5th private ivf hit the jackpot - now 17w preg

From what I've read on these boards for de abroad serum in Athens and ivi Barcelona and reprofit in think Prague /chez republic very good

bananafish81 Sun 23-Oct-16 16:55:46

Blondes I'm curious what technology you got with your clinic abroad that was superior to that available in the UK?

Can't disagree with the first point, and on the third with DE if you want ID release then UK is really the only viable option as DE overseas is anonymous - depends on your preference

But on the second I think as with anything it varies from clinic to clinic - maybe some clinics in the UK haven't got as advanced technology as some abroad, but presumably the opposite is also true?

My UK clinic offers the latest PGS techniques (next generation sequencing), IMSI, reproductive immunology treatment, EAVA time lapse embryoscope with algorithm to analyse embryo development, ERA biopsy, embryogen and blastgen culture medium, embryo glue as well as all the usual stuff.

My treatment in the UK may not be as cheap as overseas but surely it depends on the clinic as to what technology they offer?

bananafish81 Sun 23-Oct-16 16:56:37

Message withdrawn at poster's request.

Blondeshavemorefun Sun 23-Oct-16 17:15:21

Guess it does depend on clinic in uk

Mine didn't offer the time lapse special camera /watch grow - but told me it could be done at another clinic 3hrs drive away

We chose the clinic as local to us / assumed it would be high tec and up to date iyswim

Also didn't do era

Tho had glue on cycle 2

Their freezing technique is different

And TBH the actual transfer

U.K. Walked from room to theatre e in bare feet - df with me - wasn't even asked to wash hands - then when transferred I walked back to room and sat in chair for 10m and clinic said I could go home

I didn't know any diff

Abroad. Df all in blue scrubs - walked to theatre me in throw away shoes. Once embryo transfered I was slid gently over to trolley. Pushed back to room. Slid gently in bed. Told to have knees up. Rest for an hour keeping still and offered drink and then could go home

I know their freezing technology much better then uk. Read both their reports

Blondeshavemorefun Sun 23-Oct-16 17:16:07

Plus uk didn't even offer icsi to us tho now know they do it

bananafish81 Sun 23-Oct-16 17:21:04

Sounds like it was your particular clinic in the UK that didn't have superior technology, than abroad clinics being better than UK clinics across the board

A clinic that doesn't offer vitrification in the UK sounds VERY out of date tbh

Moral of the story being to ask all these questions when choosing a clinic - UK or overseas!

tonsiltennis Sun 23-Oct-16 17:34:16

Good god Blondeshavemorefun, where the hell was that???

bananafish81 Sun 23-Oct-16 17:43:07

They didn't offer ICSI?! Jesus - that's horrific!!!

eurochick Sun 23-Oct-16 17:57:13

I'm not sure there's any research showing that being slid gently works. I got pregnant twice from 4 natural/mild IVF rounds in the uk. On all 4 rounds I walked out of theatre after transfer, rested for a few minutes then went back to work. The actual technology available sounds like an issue at that particular clinic.

Blondeshavemorefun Sun 23-Oct-16 18:29:10

A clinic in kent

I know people who have got preg there so they do have success

Guess we Should have researched more but TBH I was naive to ivf. Didn't know many people who had had it - think 2 - - and one of those was 11yrs ago so totally different

I've learnt a lot in the past 4yrs !!!

I don't know why we weren't offered icsi (at additional cost)

Yes agree bRing slid doesn't mean it will succeed tho surely Laying down with knees bent must be better then sitting in a chair for 10mins but it's all the little factors that made my abroad clinic more professional then uk

bananafish81 Sun 23-Oct-16 18:36:55

You'd be horrified by ARGC where you're brought out of EC or your hysteroscopy and essentially left in a broom cupboard

No computerised records

The money doesn't go on slick decor

It goes on the monitoring and the lab

It's probably one of the superficially least professional-seeming clinics in the UK

But with the best results

(I'm not an ARGC patient but going off what friends who've cycled there have told me)

There's absolutely no evidence whatsoever that lying down makes any difference to the transfer

The embryo can't fall out

It might be a nicer experience to be slid gently off and lie down but it won't make any difference to the outcome

Blondeshavemorefun Sun 23-Oct-16 19:27:40

I know what you mean

And a broom cupboard 😱😱😱😱

Same as no scientific proof that eating pineapple boiled eggs Brazil nuts keeping feet warm etc works

But we try it just incaSe .....

tho did none of that on 5th attempt and bubs was created

bananafish81 Sun 23-Oct-16 19:32:15

Choosing a clinic with superior success rates and the best technology will do more than Brazil nuts - no point doing any of these if you're not doing the proper research about your clinic

ARGC has the best results in the country. A broom cupboard doesn't make any difference to the outcome. Superior monitoring and innovative treatments do

How do you get scanned by a Dr if you're cycling abroad? Do you have to go abroad for the entire cycle?

Blondeshavemorefun Sun 23-Oct-16 20:44:23

No. had scans at a private scanning place 10mins from home. They were lovely and so helpful

Flew out to chat to them. Few months later after emails and chats etc got scanned at local place - they emailed abroad and started on ivf drugs (which brought there and again cheaper then uk)

Then scanned again Think day 7&10. All looked good. Flew over had ec and flew back (only as Xmas /ny ) and flew Back 5 days later to have transfer

Then 2ww and failed but had Think 6 frozen from that

So 4&5 try were both fet and much easier as no injections. Just tablets there pesseries - got scanned near me. They emailed abroad results who then contacted me and said fly over in 6/7days time for transfer

bananafish81 Sun 23-Oct-16 21:25:29

To the OP, would recommend considering monitoring as a top priority when thinking about a clinic

If you're doing DE then the monitoring will be for your lining which is more straightforward

If you're doing a fresh cycle then monitoring the response to stims is absolutely critical

IMO things that I would consider important:

- being scanned by a Dr rather than a nurse or sonographer - also important so you can have an informed discussion about your treatment at your appointments, rather than having to rely on emails or nurses passing your questions on

- frequency of scans & bloods. How often, and will they do scans at a weekend?

- are EC and ET 7 days a week? The clinic should fit around your cycle and not the other way around.

- can you get drugs at short notice if they need to modify your doses as the cycle progresses?

- will you have direct access to the embryology lab for updates and to be able to ask questions. How often will you get updates on your embryos?

Other stuff I'd ask:

- do they offer the latest technologies like IMSI (super duper ICSI - specialised and not all clinics offer this)

- what kind of testing do they do up front? Stuff that's very important to check before the cycle begins includes thyroid function, and assessment of the uterine cavity (if you've not had a lap or hysto then important to have a saline ultrasound to check for any uterine anomalies that might indicate the need for a hysteroscopy before beginning treatment)

- how advanced are they when it comes to protocols - do they do the basics only, or will they use additional medications if needed (eg oestrogen priming, human growth hormone, steroids, blood thinners, intralipids)

I would personally consider these kind of factors as much more important than small details like having a private room.

fabulous01 Sun 23-Oct-16 21:27:53

SERUM in Athens is amazing

And definitely recommend fertility friends

Good luck xx

tonsiltennis Sun 23-Oct-16 21:31:03

I am an Argc graduate. It's superficially chaos yet the results are consistently amazing, over huge numbers of women who have often had failed cycles elsewhere.

Dr. Sap a made me lie still post transfer for 30 mins. Huge success! And Dr Ghafoor dos the same and that worked too. So two cycles, both successful.

The level of personalisation is awesome. I was scanned daily, bloods daily, sometimes twice, towards the end to ensure perfect egg collection. Same with transfer, and crucially afterwards. My hcg stalled and I was whacked full of steroids, and the hcg shot up once my immune system was dampened.
It's crazy money, and they own you, body and soul, for 3 weeks but the most expensive cycle is the one that doesn't work.

It wasn't local to us. The stats from our local clinic were so tremendously crap by comparison that I discounted them immediately.

Blondeshavemorefun Sun 23-Oct-16 22:00:04

How mych is average cycle at argc?

And banana wish I knew you 4yrs ago 💐

bananafish81 Sun 23-Oct-16 22:19:59

I'm not with ARGC but by way of comparison, I'm with an independent consultant, who works with CARE London

I see him and only him for all my appointments - he does my scans personally, and he does my EC and ET.

A cycle with him is £4500 (additional £1000 to CARE for ICSI)
My third cycle I did PGS which was £3000
Plus embryo freezing which was £1000
I was on high stims for my first cycle which meant my meds bill was around £2000.
Third cycle was low stims so was only £1000

Bloods were additional but unlike ARGC my consultant went off scans rather than bloods during the cycle. We spent quite a bit on pre diagnostics like immunes testing.

I transferred in a FET because I did freeze all for PGS. We treated with immunes so the meds were higher than in an 'out the box' medicated FET. We did steroids, clexane, intralipids, G-CSF uterine washes, vaginal viagra pessaries and two types of progesterone

My hysteroscopies were covered by BUPA, and again these were both done by the same consultant (as was my ERPC)

The CARE lab were one of the first clinics in the UK to offer IMSI, and one of a handful who offer next generation sequencing (NGS) for PGS instead of the older (and less accurate) array CGH technique

My consultant's success rates last year were 68% clinical pregnancy rate across all age groups. I can't remember what his stats were for my age group (<35 but it was in the 70s I think).

I have felt very well monitored and supported throughout.

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