# Leeds funded - how many goes? *



## ♥AngelBumps♥ (Jan 19, 2008)

Hello,

Please don't any of you take this the wrong way, and please also understand that I am not bitter or twisted...

When I was 22/23 I went to my GP for about a year complainging about serious period pains and abdominal cramps that rendered me incapable of leading a normal life. He arranged for me to have 2 ultrasound scans at THE WRONG TIME of month and nothing more than the odd small cyst was ever noticed.

However, I continued to go back and 'pester' him as I was in AGONY. Eventually, one day; he just turned around to me and shouted - 'You are a perfectly healthy young woman and are more likely to leave this surgery and get knocked down by a bus!' This was after a year of going to see him...

...the next day, I went to work, felt dreadful and had to go back home. My boyfriend called the emergency doctor and she then called for an ambulance... it ended up that I was on an operating table for four and a half hours whilst surgeons tried to save my life and my reproductive organs...

I was found to have HUGE cysts that DID NOT show up on the ultrasounds, my tubes were contorted and full of a 'cup full' of puss each, I also had huge abcesses on my ovaries and had developed septosemia (is that how you spell it??!) - Anyway, suffice to say, I was not not a 'healthy young woman' and was in a pretty bad way. I nearly died.

The surgeons removed all the abcesses and the cysts and then sucked out the puss from my fallopean tubes... they were so contorted that they had to snip them and twist them and sew the 'good bits' back together.

The surgeons came in to see me the next day and told me what they had done and asked me how I had coped with such awful pain for so long. Even they said I must've been in agony, but my own GP DID NOT listen to me. They told me then that I'd NEVER be able to have children without help.

Now, I cannot have children. This is down to an NHS doctor.

I have been accepted onto the IVF at Leeds ACU. I have had to have my tubes removed to increase the chances of the IVF working. I was told by two different people at Leeds ACU that, because my treatment is funded by Leeds, I will get '3' embryo transfers for '1' funding.

I have so far had just '1' transfer that unfortunately failed at Christmas. A third person/nurse told me on the day of my pregnancy test that the next time I will have to pay...

As I started out with this long story (sorry), I mentioned to you all - PLEASE - do not take this the wrong way, as I know I am lucky to have funded treatment, but my next appointment is ages away and I wouldn't have gone on holiday last year if I'd known that I would've had to pay for my 2nd and 3rd cycle 

PLEASE can someone shed any light on this for me... do you get 3 transfers from 1 funding, or do you just get 1? I wouldn't be in this situation if it wasn't for an NHS GP and yet again, the NHS seems to be failing me... what with 2 people telling me that I will have 3 goes and 3rd person telling me that that was it, that was my only 'free' go...

If I'd have sued the NHS GP, we probably could've afforded as many goes as we'd like, but unfortunately, we don't have that kind of money and now I'm wishing I hadn't gone on holiday, even though that was our first holiday together in all these years - we only went becuase TWO other people at St. James' had told us that we would get 3 tries including in one funding.

Does anybody know how many embryo transfers you get from 'one' Leeds funding?

Thank you so much. 

PS: For those people who do not agree with IVF and say that the money should be spent elsewhere on other services in the NHS; these 'blinkered'   people would do well to read my story... It's not always just 'nature' why couples can't have children naturally. Sometimes, it's down to GP malpractice. If my NHS GP had've listened to me in the first place, I probably wouldn't be even typing this email. He (my ex-GP) has cost the NHS for this IVF funding, not me.

...meant to say... I'm nearly 37 now.


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## MAL. (Mar 19, 2007)

Hiya hun

Firstly              I am so sorry your GP let you down  

It all depends on where you live as to what funding you get. What pct are you with? I am with East Lancs PCT and we get 3 funded cycles. 

I hope you get some answers soon
Take care xxx


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## ♥AngelBumps♥ (Jan 19, 2008)

Thanks for replying... and good luck with your cycles!  

My cycle went sooo wrong... I had a huge cyst (history of) and I was in constant pain at home and at work, I could hardly sit at my desk... Come the embryo transfer, I felt battered... they removed the cyst a few days before at the egg collection... I overstimulated; as they collected 23 eggs. 11 fertilised and they transfered 2 embryos. The day of the embryo transfer, after I went home, I was doubled-up in pain, I could not move my legs and wanted to call for an ambulance... in the evening, I called the nurse on the emergency number and she told me to take some painkillers... She was really good to me and helped me on the phone, but I was in such agony... I kinda knew that it wasn't going to work.

I came on my period 4 days before my pregnancy test... I was so devastated. 

The drugs I was on were supposed to supress my periods full stop, so I'm not even sure why I came on, but I just knew I would... my body was not in a good place and I'm sure the stimulation drugs were too strong for me, what with all my history of cysts... Maybe next time, they will take it all into consideration. I'm sure they know what they're doing...

I just feel I'm never going to me someone's mummy... 

Thanks for hearing me moan... I am normally a very happy person.


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## Loubie101 (Aug 20, 2005)

Hi, just wanted to say hello and welcome to FF.  I'm really sorry to hear of everything you've been through, life seems so unfair at times 

Soeey I can't answer your question re funding, but I'm sure there'll be others who can xx


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## AmandaB1971 (Feb 19, 2006)

Welcome to Fertility Friends. I'm so sorry you've had such a rough time, you have been through a lot.  I'm afraid each PCT has different funding criteria so two patients being treated in the same hospital but paid for by two different PCTs could get a different number of cycles funded. Your best way of resolving this issue would be to contact your PCT for the area where you live, not where your hospital is situated. They will be able to tell you how many cycles of treatment they fund for couples, which will be your definitive answer.

It's a common problem that people generalise and word of mouth leads people to believe that they will get more or less than they actually will. Unfortunately the postcode lottery is still very much about where IVF is concerned and it really is down to your own PCT (primary care trust) to determine how much they will pay for, often it depends on what other priorities they have. For example, I live in Blackpool which is a densely populated area, almost completely urbanised, with the highest rates of male suicide and teenage pregnancy in the country. It's therefore not surprising they only fund 1 cycle per couple as they have so many other priorities.

As for the experience you went through years ago, you are not surprisingly, very angry about that. Have you had any counselling to help you come to terms with what you went through? It might help as anger is fine in some circumstances but left unchecked over a long time it can start to be destructive.  If you'd like help finding a counsellor in your area I've left you a link below.

I hope you are able to contact your PCT and get some more concrete information and that you find away to put the past behind you and look to your future, whatever that holds. You've found a great place for support and friendship here and no-one will ever tell you the NHS shouldn't pay for IVF on this site hun I promise! 

Take care

Amanda xxx

www.bacp.co.uk

http://www.nhs.uk/ServiceDirectories/Pages/PrimaryCareTrustListing.aspx

/links


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## levin (Jan 9, 2006)

Hiya hun,

So, so sorry to hear what you've been through, i really hope that the person who told you that you would only get one free go was wrong. It does very much depend on where you live as to how many free goes you get. As far as i know if you live in Leeds you get 2 free goes - i live in Wakefield just down the road and was referred to St James in Leeds but because of where i live im only entitled to 1 free go - i was told that the waiting list for people from Wakefield would be at least 4 years so as a result we decided to go private because there was no way i was going to waste another 4 years and only get 1 go at the end of it. Luckily for us it only took 2 attempts at Care in Sheffield - cost us an awful lot of money but when we have our twins it'll be more than worth it.
Good luck hunnie and as i say i really hope you do manage to get some more free goes.

Love Leanne x


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## Caz (Jul 21, 2002)

Hello GPfailedMe, welcome to Fertility Friends. 

So sorry to hear you have had a lot of pain and a terrible experience with your GP.  I guess, years ago, women were fairly easily dismissed for pains etc. Your story is by far from the only example of incompetence by a GP or medical professional, it is sad to say. Have you considered taking the matter further (i.e. making a formal complaint?) If this is something you are interested in doing, I can can have a look around and see if/what process you need to follow and provide you with some advice? 

You might find this thread interesting to read. You might also be able to contact some of the members who have posted there for information on what they did:

CLICK HERE

From the sounds of your post I think you have an awful lot of unresolved anger around your infertility here which, if you want me to be honest, you need to move past, so I think Amanda's suggestion of looking into counselling is a very good one. I am guessing your negative feelings are exacerbated by your recent BFN  Nothing you do or say now will change what has happened in the past, and it is entirely possible that, even if you had had the most excellent GP who had sent you for tests straight away, you might still find yourself facing fertility problems.  You now need to concentrate on what you can do to succeed in becoming a mummy - and I do believe you can do it! The first cycle is always a bit of a questionmark - nobody knows how you might respond to the drugs and what you will end up with but, I think you will find they have learnt loads from this and, next time you can go in armed with questions and make sure things go smoother. I would defintely ask about the early AF before test day and what could be done about that (possibly increase the dose of progesterone or use gestone instead of pessaries). Here's a link you might find useful. It says it's for ICSI but is actually appropraite for IVF too: 
*ICSI Follow up Questions ~ **CLICK HERE*

The NHS is one big postcode lottery when it comes to funded treatment - I think I can say with confidence that you are unlikely to find anyone on this site objecting to any sort of funded treatment, as we are all in the same boat and would all prefer not to shell out thousands to just be able to do the one basic thing we are biologically designed to do. Even though I did not qualify for NHS funding myself (DH has 2 grown up sons who "counted" as children despite being in their 20's when we first we found out we needed tx and who did not live with us) I don't have any ill feelings towards those for whom funding is available. If I lived elsewhere we would have been funded. 

I don't know specifically what the criteria for NHS funded treatment in your area but I do know that what you are often told by one, turns out to be innaccurate and, perhaps the best way to clarify your funding situation would be to go directly to your PCT PALS and ask outright for written confirmation. It's possible that your PCT would fund 1 complete tx, and 3 ETs (i.e. one cycle with EC etc. and another two FET cycles). You don't say if you have any frozen embryos but if you do then things might not be so bleak as they first seem. As I say, contact your PCT - you might even be able to make a special case for funding under your circumstances so all is not lost. You might want to speak to the other FFers who are at your clinic or in your PCT. You can meet them here:

*Yorkshire Locations Board ~ *CLICK HERE

And finally, please don't think you threw money away that could be better spent with your holiday. Although, infertility and fetility treatment can be all consuming, life does go on around you and, sometimes, you have to stop thinking about what you are going through and try and enjoy the good times while they are there. I went on a really expensive all inclusive holiday to Mexico right before my first IVF - I though my IVF would cost me nothing as we were egg sharing and all tx for the sharer was free but, in the end we needed ICSI too which set us back about £1200 that we didn't have and hadn't budgeted for. All in all, I think our tx has cost us about £10,000 over the years but, for 6 attempts in one of the more expensive London clinics, that is actually very reasonable and I know ladies on FF who have spent far more. In the interim I have still gone away on holiday where I could (and even when we couldn't really afford it) just to get back to being me for a couple of weeks. I am completely skint now but I don't regret any of it for one minute and, I like to think that even if I'd never been successful in the end, I would still have no regrets because I gave it my all. 

Here's a few more links you might want to check out:

*What Every New Member Needs To Know ~ *   CLICK HERE

*Words, Meanings & Jargon ~ *CLICK HERE

*IVF General ~ *CLICK HERE

*Negative cycle ~ *CLICK HERE

Wishing you lots of luck, I hope you can get your funding issues sorted out soon. 

C~x


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## Strawberries (Apr 6, 2005)

Hi GpfailedMe,

Just wanted to say hello and welcome to fertility friends 

Strawberries xx


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## ♥AngelBumps♥ (Jan 19, 2008)

Thanks to you all for your lovely comments... I know I sound 'angry', but honestly, it's just the way I type - very: to-the-point! At my age (36), it's hard to forget something that happened ages ago (I was 22), but that is affecting every aspect of my life right now... I was a young healthy woman who got ill, that's all. I love my partner and have a lot of good things in my life. The only thing that's missing for us both is a child. I'm not angry at what's gone, just frustrated  that I keep getting messed about with something that is so personal. Am I just not listening, or is it that we see different people everytime we go, so each person has a different perception of what we can and can't have...

When they explained about the procedures all those months ago, they did say we got 3 goes    from the one funding... it was only on the day that I went in to have my pregnancy test at Jimmys that I was told otherwise. It was all a bit too much... coming on my period, having to drag my unhappy self to the hospital and then being told; I'm not pregnant for sure and there is no more goes. That's it. Just been so unhappy since Christmas, that's all girls.

Anyway, because you have all been so helpful and informative, it's helped me to understand that it's not just me in this situation and I will stop being so selfish . Also, sorry - I meant to say... I am under Leeds PCT.

I will try all your links and hopefully get some great info and help .

Thanks for hitting on the fact that I 'came on' early - maybe that is a factor I would've just thought was a natural occurence - I never thought that it's because the drugs might not have been strong enough... I didn't have pessaries, I had Gestone. I also, didn't have any embryos frozen as they said they hadn't 'split' as many times as the others, but not sure why that was such a strong factor for them not to freeze, especially as those could've been the only embryos that I might have produced... Anyway, at least my eyes are open for next time around... oh, and we'll just have to get a loan! Or sell my shoes on EBay... much rather have a blue  and/or pink  baby than my silly stilettos anyway!

Thank you all so much, really.


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## MAL. (Mar 19, 2007)

Hiya hun

It sounds like you have had a tough time      I am also on gestone (ouch don't them jabs hurt  ) and did not get any frosties   and was given the same reason as you.

It sounds like you are on the mend though, have you had your follow up so you can ask them any questions?

You take care and always here if you need a chat    

xxx


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## AmandaB1971 (Feb 19, 2006)

Hi

It could be that your PCT has changed it's criteria since your intial appt at Jimmys and perhaps you did get 3 goes when they told you that and now you don't.  PCT's tend to change their criteria depending on the state of their budgets/other government demands to reduce certain illnesses/waiting lists.

If you're unsure I'd speak to them and challenge what they've told you until you get an answer which fully explains the situation to you.  Alternatively contact the PALS Dept at your Hospital.

Axxx


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## ♥AngelBumps♥ (Jan 19, 2008)

WTBAM said:


> Hiya hun
> 
> It sounds like you have had a tough time     I am also on gestone (ouch don't them jabs hurt ) and did not get any frosties  and was given the same reason as you.
> 
> ...


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## Caz (Jul 21, 2002)

GPFailedMe said:


> It was all a bit too much... coming on my period, having to drag my unhappy self to the hospital and then being told; I'm not pregnant for sure and there is no more goes. That's it. Just been so unhappy since Christmas, that's all girls.
> 
> Anyway, because you have all been so helpful and informative, it's helped me to understand that it's not just me in this situation and I will stop being so selfish . Also, sorry - I meant to say... I am under Leeds PCT.


Ah bless you hun  You are not being selfish. Maybe feeling a bit sorry for yourself but, hey, find me someone on here who hasn't had a moment like that from time to time, especially after such a devastating negative and being told no more funded goes. 
I am very lucky to have finally succeeded on my last cycle and now have a little man just under a year old, but if you read my profile biography, you will see how close we came to not getting there and you can imagine the frustration, fear and anguish I went through. I *do* understand and, I think, that's the great thing about FF here is that you can express those feelings on here and know that those who are reading know exactly where you are coming from. 



> Thanks for hitting on the fact that I 'came on' early - maybe that is a factor I would've just thought was a natural occurence - I never thought that it's because the drugs might not have been strong enough... I didn't have pessaries, I had Gestone. I also, didn't have any embryos frozen as they said they hadn't 'split' as many times as the others, but not sure why that was such a strong factor for them not to freeze, especially as those could've been the only embryos that I might have produced... Anyway, at least my eyes are open for next time around... oh, and we'll just have to get a loan! Or sell my shoes on EBay... much rather have a blue  and/or pink  baby than my silly stilettos anyway!


Hmm, ask them about increasing the dose of gestone or, perhaps gestone _and_ cyclogest? Some ladies do bleed early after ET though, regardless, so you might just be one of them. You might want to ask them to do a progesterone test to see if yours is naturally low. 
As for the frozen embryos - generally, unless you have really good top grade embryos that are at the right cellular stage for their age (day 2 usually about 4 cells, day 3 about 8, day 5 blastocysts) then there is little point in freezing them as the chances of them surviving the thaw are slim. To give you an idea, on my third cycle I had two top grade 4 cell day 2 embryos thawed and although they thawed ok, they did not go on to divide. The next time I had FET I had 4 thawed (again top grade all 7/8 cell day 3) and only two survived but were quite slow dividing too but we put them back and I got a BFN.

From what I can tell, you have a fairly normal fertilisation rate (11/23) but if you had none from the 11 good enough to freeze you might want to ask questions about the quality of your eggs / embryos, particularly the two you had put back. Do some research here to find out whether yours were up to scratch (it wasn't until after my first cycle failed that I discovered my embryos were actually not that great anyway but it would have been nice to know that and not get my hopes up too much before). Having said that, sometimes the dodgiest looking embie can go on to become the most gorgeous baby so try not to assume the worst just because it's not a top grade super-douper olympic standard embryo. Also, 23 is a lot of eggs and, if you were in a lot of discomfort afterwards, you might have overstimulated a bit. It sounds great having so many eggs but not if it makes you ill - anyway, you can only have 2 upt back and if you can't freeze the rest there's little point having them!

Try having a look at these links for ideas about improving egg quality / quantity:

*Complimentary Therapies ~ *CLICK HERE 

*What can improve egg quality and quantity ~ * CLICK HERE

Most important of all, *THINK POSITIVE!* PMA  It's about the only thing we can really affect during tx and I honestly think it makes a difference. You may now have to fund your own tx but, look at it this way - as a private patient you will get a lot more say in the whole thing as it's your money you are using - you can go to another clinic of your chosing with, maybe better success rates or a more flexible approach if you like. Self funding is not all bad.  Who needs shoes anyway! 

When do you go back for your follow up review appointment? If you have not made one yet then please do so and start thinking about Round 2! )

C~x

P.S. Please don't take this the wrong way but why don't you start the new positive you by changing you user name to something positive that looks to a hopeful future and not something that dwells on a painful past?


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## emsy25 (Mar 18, 2005)

Hi,

Just wanted to say hello and welcome.

Emma
x x x x


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## Kamac80 (Nov 24, 2005)

Hi and welcome to the site 

You have come to a fantastic place full of advice and support and i wish you loads of luck with everything.

Kate xx​


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