# Betrayed by the promise of IVF?



## recorder (Jun 14, 2009)

IVF success rates are around 30%.  This means that quite often it is normal to need multiple treatments - potentially at massive expense - to achieve a live birth.  As many will know, even when a BFP is achieved, it is not uncommon to achieve only a chemical pregnancy, or for the pregnancy to miscarry before 12 weeks.

It also means that in any one year in the life of an IVF clinic, around 70% of patients that seek treatment do not bring home a baby.
In the media often IVF is rerported as 'a miracle cure' and often people are not frank about using it, about using donor egg IVF, or about multiple attempts needed.  (Sometimes they are though).  Often IVF clinics themselves tend to speak only in positive terms (despite the statistics they publish) - giving couples hope so that when it does not work they feel isolated and as if they - rather than the treatment - have failed.

Remember that when an IVF clinic advertises '5,000 babies born since we set up in 1998' .... almost certainly means 'and 10,000 babies not born since the same time .... '


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## cosmicgirl (Oct 2, 2009)

Could you add another voting option as neither applies to me?  I didn't feel betrayed or misled about my chances, my clinic told us the chances at the info day and even my GP knew it was about 30% when I discussed it with her so although my tx didn't work I went into it with my eyes completely open to the odds.


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## suitcase of dreams (Oct 7, 2007)

I agree that another option is needed for the voting - it's not as black and white as the two options would suggest

I did plenty of research myself (plenty of good online sources for this) before embarking on IVF and I knew the odds were against me. My clinics/consultants were also honest (at times brutally) about my chances of success so I can't say I feel betrayed in any way - I knew what I was doing 

That said, I agree the mass media can often portray IVF in a misleading way - but then again, we all know you can't believe everything you read in the papers    And similarly you can't believe the clinic's advertisements either...much like you would remain sceptical about any advert until you checked the details/small print

Suitcase
x


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## cosmicgirl (Oct 2, 2009)

suitcase of dreams said:


> That said, I agree the mass media can often portray IVF in a misleading way - but then again, we all know you can't believe everything you read in the papers


I went into IVF with my eyes fully open and like W1NSOME was happy with a 30% chance compared with practically diddley squat otherwise, however other people's expectations were harder to deal with. The mass media tends to only print celeb success stories and I suppose if you're not going through it yourself you might believe having IVF = baby as simply as that. My DH's brother kept going on about how excited he was about becoming an uncle and even talked about us having twins or triplets - I made DH have a word with him


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## joeyrella (May 13, 2009)

i think your perspective depends on why you need assistance in the first place.  If its because you have a condition which prevents you conceiving no matter what age you start trying to have a baby then IVF opens up a whole new world to you, where there is a chance of having a baby, even if its only a 30% chance.  without fertility treatment i would never have conceived, i much preferred the small 10% success rate IUI offered than having to accept a life without children, as i would have had to have done before fertility treatments became widespread.
i think if you start trying to conceive later on in life with the idea that you always have IVF as a back-up plan to help you overcome the natural decline in fertility then perhaps you would feel more inclined to be angry that the media seems every day to have stories of celebrities who have babies in their late 30s/40s via IVF and makes it sound as if they strolled in off the street and back out with their twins a few weeks later.
i don't think i have ever felt misled about the chances of fertility treatment working.  if anything the clinic erred on the side of negativity.  i was amazed to find myself within the 10% who conceived as we went into it expecting/fearing that we would never have a baby.


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## livity k (May 19, 2009)

Hi 
I would agree with the other posters, even though it took us 4 attempts (1 fresh, and 3 frozen) without ICSI- we would have had no chance of conceiving, I just think it is amazing that the technology and expertise is out there! 

It was hard but worth it, I was never misled- 

Livity


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## recorder (Jun 14, 2009)

each cycle will cost about £3,000 - £4,000 cash; £8,000 for a donor egg

which is 4 x £3,000 = £12,000+ or possibly 3 x £8,000 = £24,000+ cash for a baby ... with some early miscarriages and possibly a fetal death or two on the way. That is the stark reality.

- unless one gets free treatment on the NHS.

Some people will be ruled out immediately upon diagnosis because there is no money available. 
Is this still an equitable system for all, with predictable, guaranteed positive results for all patients?

Although I do hear what everyone is saying - after all, that is precisely why the man from Bourn Hall got awarded the NObel Prize last year (or at least that was how it was reported in the Press - ie that his science allowed couples with compromised fertility to get the 'same' chance as the normally fertile) it does boil down to how much funding is available.

if you need a donor egg, you need £8,000 per cycle in the UK for each time you are given the 'same' chance as the normally fertile.

I am not sure how ethical this is because success is dependent on funding availability - whether from your own pocket or the NHS and even that varies from county to county. So many of us do not have the 'same chance' as the normally fertile - we have a desperate one-off shot at pregnancy compared to the normally fertile who can keep trying month after month. Many patients drop off along the way _and the vast majority are unsuccessful._


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## kitten77 (Nov 15, 2006)

i ticked the YES button, due to the fact when we went for ISCI (fought to get funding as i was classed as 'too young') - so when we had our first cycle, we were told i was 'perfect', embroys 10out of 10, i was young at 27 and could only have 1 transferred as very very high chance of it working due to all the factors listed above..........

.........ive just started our 6th ISCI.........


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## recorder (Jun 14, 2009)

i am sorry to hear about what you are going through.  I think your experience is perhaps more representative of what many women are experiencing.  

I used a twenty five year old donor egg; I had a perfect uterus (proved by laparoscopy), a perfect lining (the 'triple line') because I was using synthetic hormones; the blastocyst was 'textbook' and obviously v young; it did implant and steamed away with fantastic HCG values which the clinic said indicated a 'strong' result ... but miscarried 10 days later and left me with a lot of bleeding and a D&C operation.

I had two frozen blastocysts from 25 yr old eggs - 'the best blastocysts we've seen in a long time'; great uterine lining (the triple line again) and perfect hormones as a result of medication .... this was nothing more than a chemical pregnancy.

In IVF there are no guarantees; little is predictable and the most perfect candidates end up with miscarriages and the most bedraggled, seemingly no-hope embryos work in the most 'challenging' uterine environments full of fibroids or with poor linings.  That is the problem with this treatment.  And I was denied funding  - whilst my cousin who lives in another county was given two free attempts.


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## recorder (Jun 14, 2009)

I am sure i am wrong, but i suppose i am saying that I do not think that a treatment that is random, unpredictable, prohibitively expensive with often unfathomable failure and success, and not administered to every citizen on an equal basis, is 'a good treatment'.
I think it is merely a _shadow of possibility_ with consequent loss, terrible stress and waste. However, I guess that some hope is better than nothing at all.


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## joeyrella (May 13, 2009)

I understand that you are naturally devastated by your lack of success and your losses, but if you knew this was how it would turn out would it have been enough to prevent you walking through the fertility clinic door?  In all honesty it wouldn't have made any difference to me, whilst there was still a sliver of a chance of having a baby I would still have had to do it no matter the costs, financial, physical and emotional.
There are lots of procedures and treatments where the outcome is not guaranteed - what about chemotherapy for example?  Just because the outcome of IVF is not guaranteed, and is often unpredictable does not mean its not a good treatment in my opinion.
The funding issue is another matter.  It does seem very unfair that people in one area will get X amount of cycles funded and people living a few miles down the road will get fewer cycles or no treatment at all.  However, as infertile people we are only concerned with fertility treatments, what your health trust doesn't spend on IVF it probably spends on other treatments people in the next county will not get.


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## kitten77 (Nov 15, 2006)

dont get me wrong, i will take any chance of isci working ANY as its more hope than i would have normally, the question was 'betrayed by the promise of ivf?' and in my case they had built my hopes up as i was perfect, perfect everything etc etc etc as explained above, and so therefore i do feel slighty betrayed by the promise of ivf.

but please please dont think i am moaning as i am very very grateful for the chances we have had to have a baby....and will take any chance even if it slight.....but i was just answering the question......


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## L_ouise (Sep 23, 2010)

I'm sorry that you are so upset right now - i assume you had a failed cycle?

Are you trying to imply that if you had known the success rates that you wouldn't have had it done?

I haven't had a cycle yet but i have been made more than aware. Admittedly, the clinic i am going to are saying their success rates for my age group etc are 70% but just from google i am more than aware that it is commonly 20-30% success rate - but as long as they aren't lying about their rates then you can't say fairer than that.

Something is either 100% or not and if it isn't then there is always a very real risk that it isn't going to work.

Even if i had been told the success rates were as little as 5% i would still try - you just have to try when it comes to wanting children. You just have to do everything possible.

i hope you still have options open to you xx


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## kitten77 (Nov 15, 2006)

louise - im not sure if you are talking to me or not?

as about the chances.....yes even if i had 1% i would still try (im on my 6th tx at the momnet so i think that tells you something about the fact that i still try). but i was answering the question of did you feel betrayed by the promise of ivf, and the answer was yes from my PERSONAL view and CLINIC. they built my hopes up, i KNOW that it wasnt 100% but i was anwering the question.

i answered this question well over a year after my 5th failed tx in jan, so no emotion was involved in my answer.  

i was given my % from my clinic but was made to feel that it would work.  granted now they take a different view in my circumstances ha ha ha. 

just hoping this tx has a different outcome.


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## coweyes (Sep 4, 2008)

Hi all


I probably have felt a bit betrayed tbh.  I was lucky enough to be offered 2 x icsi and any frozen cycles from that free on the nhs.  After using up all my nhs funding and receiving 2 bfn and one early miscarriage i went to a private clinic to do egg sharing.  During that time i was tested for chromazone abnormalities only to find out that i have a chromazone problem which means that i have a very high risk of miscarriage and problems implanting and that the nhs treatment that i received was not the correct treatment for me and offered very if any hope of working!

I understand the condition i have is rare and because if it its not ruteenly tested but i wasted all my nhs treatment on something that was not going to work.  The fact that i was given a 47% success rate when it was more like 0 is really hard to take.  I believed in something so strongly (because that was what i was told)  only to find out that it was not worth believing in. I feel as if i believed in a religion and that i lived it and breathed it for 2 3 years only to find out that its not real! So yes i do feel betrayed and let down.  Even though i am unsure if its really anyone's fault or just one of those things.  Its a very hard situation to pick yourself up from emotionally.


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