# Anyone had this sort of trouble with IVF...?!



## Red66 (Apr 11, 2006)

Hi all

Haven't been the boards for a while as I've had long delays waiting for treatment. I just wondered if anyone has been through similar trials as me. I'm now 41, first approached my doctor 4 years ago to get help then had 6 months here, 6 months there waiting for tests, treatment, to see the doctor. Finally got 6 months of clomid on the NHS last year with no result. So then saw the same doctor privately last August who said yes, no problem start IVF next period, all your test results are fine! When I contacted the nurses they said he was mad as building work was about to start on new labs and there would be no treatments going on (Brentwood Nuffield). Try calling again in 4 months....

So we hummed and ha'd about moving somewhere else but felt this was best option for us as regards location and when contacting nearest other hospital they said they couldn't treat me till February 2007 anyway. SO called hospital again in the October to see how work was going, funnily enough it had been put off till November! And they had 'called everyone in' who had been waiting! Well they didn't call me!
Heartbreaking, and now there was another 4 months wait...

Then I reached 41! Finally got to go in and have the nurses discussion last month so all was on, hurrah! Went out and bought all the drugs as I had short notice before AF was due. On first day of period, went for 1st scan. As it had been so long since my last FHL tests and they couldn't see a result for my rubella (which I had had in October 2005) they sent me for more blood tests and off I went to work, ready to start injections the next day.

Of course then I got a phone call that afternoon - my FSH was too high AND I was anaemic! No way could I start. First punch.. So waiting my two weeks to see my GP about the anaemia at the moment, just had another call - oh, they've just noticed as well that my rubella antibodies are very negative and I've got to get another vaccination and then wait ANOTHER THREE MONTHS!!!!

Aaaarrrgghghghghgh!!! Why has no-one seen any of this before. I've been under 2 different hospitals now, both have said I could go ahead with IVF. Has no-one noticed before that I've been anaemic and that my rubella didn't take in October 2005? When I asked the nurse today why the doctor said my results were all OK in August 06 she said the doctors don't look at things like that! And the nurse would have done but of course the building work stopped all that.

It's so disheartening, time just flies by. Why don't they fast-track us older ladies more. We're unexplained so it's no like I can even blame anything. It's so UNFAIR!

I've got 14 nephews and nieces and even 2 great-nieces now. My sisters offer me their eggs but even their too old now! And I don't think DH is keen on that route anyway.

Anyone got a good hopeful story to tell me that my life as a mum isn't just wasting away? I'm getting so stressed and sad. Sorry it's such a long tale!


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## Kitty kat (Mar 21, 2006)

Hey Red

That sounds so bloody frustrating.

I approached my GP about 6 weeks after my 40th birthday, only to be told that my local assisted conception wouldn't see me as I was too old - the cut off was 40.  I told her, but I've only just turned 40 and she replied 'no, the cut off is your 40th birthday, sorry we can't help you.'  Her hands were tied but she was sympathetic and offered to get me a scan, which I waited 5.5 and months and to have some blood tests - that showed I was ovulating and my FHS was low and my husband got a SA - these also took months to come through but then we were on our own.  

After a few false starts we decided to go abroad and pay for treatment.  Anyway, I'm now 42 and 27 weeks pregnant with twins.  Weirdly, for them not helping me to get pregnant, they can't do enough for now I am pregnant, I'm being scanned every 4 weeks, I've got a obstetrician, the midwife is seeing me every two weeks and my GP every week and all could not have been nicer.

Is there anyway you can go privately?  I know its expensive but at least you feel you have some sort of control and once you hit the big 40 you really can't afford to hang around.  As annoying as it is, I regret waiting all those months for scans and tests on the NHS when I could have had them done in a within a week at a clinic.

Good luck

K


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## minttuw (Jan 22, 2007)

Hello Red66,

Sorry to hear about your troubles with starting treatment. I do feel for you.   

I am also 41 and have been TTC'd for 4 years. When I went to see my GP for the first time about infertility she did refer me to an IVF clinic at the local hospital straight away. But at the hospital I saw a really unsympathetic doctor who didn't explain anything to me just took down a few pieces of information and booked me in for a laparoscopy to check the tubes. I was quite ignorant at that time about everything reg. infertility but I started to do a lot of research. In my home country laparoscopy is never used to check the tubes anymore unless they suspect a problem, instead they use a more modern ultrasound technology called HyCoSy (Hysterosalpingo-Contrast Sonography) which is a non-invasive procedure. Therefore I wanted to have this instead of laparoscopy but the clinic didn't have the technology or expertise so I went to see my GP so that she could refer me to somewhere else. I was prepared to have to explain to her about this procedure (she had never heard about it) so I had printed out some information for her, which she took and agreed to check which clinics offered this. I got the phone call from her later and, when I contacted the clinic she had suggested, it turned out that she had been asking about Hysterosalpingography instead of HyCoSy!!! So I decided it's best to do the research myself and eventually I found a private clinic in London (Create Health) which does this procedure. 

However, I went back to my GP to get some blood tests done, which the clinic required and which had been mentioned in Marilyn Glenille's book Natural Solutions to Infertility. She did agree to these but after a few tests, when I called to get the results and she was not available and I had to speak to the "head doctor" of the surgery, I was told by him that I am not allowed to have all these expensive blood tests done via NHS and he is going to remind my GP not refer me to any more blood tests.

Also my DH had a couple of SAs though NHS but at some point they lost the results and when they eventually found them it showed a very low quality/motility (very different to other SAs he'd had previously and later on) so we think they probably got them mixed up with someone else's test results.

I have completely lost my faith in NHS and have accepted that in order to get proper treatment by competent doctors without too much delay (which we over 40's can't afford) I have to pay for it.

Since then, as you can see from my signature, I have had 3 IUIs (Create Health) and an ICSI (ARGC), all of which have been unsuccessful. But I have 100% trust in my doctors and the clinic staff competence. Many clinics (incl. mine) won't start the treatment if your FSH is over 10. I had a raised FSH level (12.5) but it has come down with acupuncture. I had two monitoring cycles at ARGC when I couldn't start the treatment because of my levels before I could finally start the treatment. They do the monitoring in order to pick the best cycle and to avoid wasting your time and money as the treatment would not work if the levels are not right from the start.

I wish you all the best for what ever you decide to do. 
minttuw


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## Red66 (Apr 11, 2006)

Thanks Kitty kat and Minttuw. Don't we all suffer! Some good ideas though, talked to my DH about looking elsewhere in Europe for further treatment, not sure yet but it's an idea! 

Kitty kat - I am private now and these last problems are all through the hospital that I'm paying for!! 

I wonder if anyone has ever complained about their treatment by a hospital? I think my hospital have behaved badly in that they didn't check my results back in August last year when I could have been dealing with all these problems and be fit and ready to go again now. And because of them I might have missed chances.

Red


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## Kitty kat (Mar 21, 2006)

Hi Red

If you are paying for the treatment that is outrageous.  I would complain but I don't know how far it will get you.  

When we were knocked back by my GP, we were as green as grapes and knew not very much.  We originally went to the London Women's Clinic for advice treatment and basically they recommended  3 or 4 IUI's with a success rate of 22% before moving on to IVF.  We paid to go through one when we discovered the actual success rate for a woman of my age (41 at the time) was less than 5%.  I was furious and flet emotionally and financially ripped off.  I complained to the clinic and reported them to the **** who were tantamount to useless and didn't even both replying to my last letter.  But at least my complaint against the clinic was registered.  

This is one of the major reasons we decided to go abroad.  Another thing is that when I went abroad, they wanted to do a hysterscopy to check me properly and I was diagnosed with a thin lining that would have caused implantation problems.  This was not picked up by my NHS scan nor when having the stimulated IUI at London Women's Clinic

There is a great yahoo group called conceiving abroad where women are travelling all over Europe for treatment.

Good luck

K


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## onelasttime (Feb 9, 2007)

Hi Red,

Whilst my exeperience of the NHS/UK Clinics hasn't been as disappointing as yours, I can sympathise with your situation and frustration. I first went to me GP in August last year after approx 8-12 months ttc (I was 39 at the time, 40 now). He advised me that if I was expecting a referral to try and find out why we were having difficulty, I'd be disappointed and that basically, everyone is 'pushed down the IVF route these days'. At 39 I was still 'young' enough to qualify for NHS treatment, but because the waiting list is 2 years for IVF and you have to be under 41 before you start I wouldn't qualify. So we decided to go private, which still had a 6 month waiting list. We also had a very upsetting appointment with a doctor who told me (unprompted) that whilst I might look younger than 40, my eggs weren't! She also told me we only  had a small chance of success with IVF and I really felt that her attitude suggested that we'd left it too late and had no one to blame but ourselves. All this for £4,500 (incl drugs). 

At first the thought of going abroad for treatment scared me stiff, but after a couple of weeks getting my head round it and a visit to the clinic (plus many emails from the doctor), we are now going abroad for the same treatment, with better success rates, younger and more  dynamic staff and a much more hopeful outlook. The treatment, including drugs is costing us £1,700 and our expenses for both trips will be around £800 - so the overall cost is £2,000 cheaper than the UK. 

I know it's not for everyone, and I know that we're just at the beginning of our treatment, but I have more faith in european clinics than I do my local one - from my limited experience the experts abroad just seem more expert, somehow. 

Hope some of this helps

SJ


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## Lorri (Apr 17, 2005)

I first went to my GP at age 39, and wasted so much time with referrals, tests etc etc. At one point the NHS consultant admin "filed" my file instead of referring me (more months lost  ). The trouble is, when you start out, you are so naive and just expect to be told what to do, what is needed, what is the best treatment, where to go, and that you have no other option than to wait. Its all B****CKs really. Really we should be pushy, don't wait, make phone calls, do research, go where you want, as at 40+ we really cannot afford to hang about (if only I knew that when I was 39)  .


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## minttuw (Jan 22, 2007)

Red, I would complain if I were you. I've never done it myself but I think they should not get away with things like that! Good luck and stay positive!  

Lorri, completely agree with you. I think NHS and GPs are a waste space!!!  
BTW, I also got a big tom cat called Oscar who likes sleeping in similar positions as yours (as well as another neurotic ginger tabby Sofia who's now dribbling next to my keyboard!! ). 

minttuw


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## Empty2 (Aug 12, 2006)

Hi Red66 and girls,

Sorry to hear of your poor response with help.

Can I come on here for a moan also?  know exactly how you feel, I am totally rung out today!  
Next week we are supposed to be doing EC with our donor, but yesterday at our scans I mentioned to the clinic that my throat was swollen, likely to be my thyroid playing up again (slightly under-active yet specialist says OK and doesn't treat).  Was then informed by the clinic doctor this would stop me having the embies put back in as it would be 'unethical' to do so with an underactive thyroid!    Bloods were rushed through and done today and the clinic said about 6.30pm we would be able to continue treatment.....aaaarrggh!  All day I have been in termoil, the specialist says its ok to be slightly underactive and the clinic say not!   

After 10 years of failed IVF's and miscarriages I have been going crazy trying to get answers and tests done to find out why me?  Maybe this was the answer all along?


empty2

Ps sending you all


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## Red66 (Apr 11, 2006)

Thanks for all your great replies ladies. Always good to hear others feel the same way.

Empty2 that's horrible for you but I know it's all part of the same helplessness we all feel at being pushed and pulled around and told yes/no, stop/go. Why is there no fantastic Council who could look after all of this for us all, in particular to take notice of us older ladies. I know there are regs and boards but they're all strapped for cash, run by bureaucracy and just basically NOT GOOD ENOUGH!!

And SJ, thanks for the info on going abroad, that sounds v interesting and I told my DP that it ws bound to be cheaper than UK so I'll look into that.

love and guardian angels to us all!!

Red
xx


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## MrsBunny (Oct 2, 2006)

Red, my story is similar to yours (but not as bad) in that we spent over a year finding out that one of my tubes was blocked and that I didn't respond well to comid - basic things that we could have found out in a few months having gone private in the first place. By the time we did go private, we waited more time to find out my FSH was high and periods really irregular so decided (with advice) that IVF with my own eggs wasn't going to be the best option so are now waiting for DE treatment abroad. I'm now nearly 46. The other thing was that we only saw the actual consultant once on the NHS and he's been very accessable since going private, even giving us his personal e-mail address!!

As everyone has said, it would be good to know how long these things would take beforehand and maybe we could make more informed decisions about what to do next. That's why this site is so good!   Hopefully 'newbies' reading our stories will not just leave time to go by so much and be inspired to take control of the situation if they can (easier said than done I know).

Use this site to look at peoples' stories of treatment abroad. As Meerkat says, you have good grounds to complain, but the best thing is to look forward and not get tangled up in stressful 'if only' situations. Even another clinic here may be a better option than the one you are at. I'm sure the stress of waiting for things to happen affects us older ladies more - our cycles are already getting more fragile as the years go by and the last thing we need is to be worrying unnecesarily. Taking control is the answer!!

Good luck to you and all the others who have written on this thread (hope your tx is going to plan now Empty2).

  

Mrs Bunny xxx


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## Empty2 (Aug 12, 2006)

Hi girls,

Thought you might like some good news

Yesterday (Mon) my wonderful donor went in for EC and today we have just been told there are 15 embies that survived!!!!!  7 will be frozen as 2pm embies and 8 will go on to blastocyst (hopefully).  ET will most likely now be Sunday.

My acupuncturist said the most likeliest reason for my thyroid is playing up is the trauma the clinic have caused all the way through this treatment!

Just got to get my self calm now for Sunday!


emps


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## MrsBunny (Oct 2, 2006)

15 embies!!!!! That's fantastic Emps. 

Sending you lots of      

And hope you're nice a calm (well on the outside anyway) for Sunday.

Good luck xxxx


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## moomi (Apr 5, 2007)

Hello 

This is the first time I've posted on this site.  I'm 40 next month and about to start NHS funded IVF at Queen Mary's Roehampton.  If I had not managed to squeeze in one NHS funded round I would have gone private.  I am already getting frustrated by endless delays and red tape with the NHS (although realise I'm very lucky to have this opportunity) and am intrigued by idea of going abroad should this cycle not work. 

I have no idea how to get started with finding a good clinic abroad.  Can anyone help direct me to a good source of information?  I'll also start trawling through the section on this message board.  Someone mentioned a Yahoo message board but I can't find the reference to it ...

Many thanks


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## MrsBunny (Oct 2, 2006)

Hello meadey

Welcome to FF.
You will find loads of information on the 'Treatment Outside the UK' board, there is a thread there with clinic reviews on it. Generally, although there's loads of info around, it is quite difficult to find information as unfortunately it's not all in the same place and there are now quite a few clinics in different countries that people go to, but this board is the best for getting started I think.
Try this - http://www.fertilityfriends.co.uk/forum/index.php?board=148.0

If you find a clinic you like the sound of it's often best to send a personal message to somebody that is using that clinic and has posted a reveiw.

Wishing you all the best with your NHS IVF treatment, good for you for getting it in before going private! I hope it works out for you. And whilst it's good to be thinking ahead if things don't work, try to stay positive about this treatment coming up!!



Mrs Bunny xx


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## onelasttime (Feb 9, 2007)

Hello Meadey,

In the space of 6 weeks I've gone from waiting for my first (privately - I just missed out on the age lottery) scheduled IVF/ICSI - for May 07 at my local clinic in the UK, to travelling to the Czech Republic for the same treatment in 4 weeks time. We've cancelled our UK treatment and are happy with our decision.

My experience was that I compiled a list of all European clinics (you'll find Spain, Russia, Ukraine, Poland, Cyprus, Czech Republic and Turkey to be well covered with clinics). I then contacted all clinics to find out their success rates for the type of treatment we need. I also factored in costs of treatment and also expenses (flights/hotels etc). I then made a kind of 'league table' - partly based on hard facts such as cost and travel, and partly based on gut feeling - ie the type and speed of emails I got back. I found that most clinics had good websites and you good get quite a lot of info on there. 

It was then that I found FF - and starting looking at the comments other people were making about my short list. You can never be sure - but I had narrowed my choice down to 2 clinics - I visisted 1 and made my choice after the first visit. I am a bit of a chancer, but even for me I think it was better to have that first visit. I liked the Doctor, the clinic is fab, like the city and I think we can relax there and feel positive about the treatment.

Good luck with your search, any questions please feel free to ask - plus - there's loads of really experienced and helpful people on these boards.

SJ66


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## moomi (Apr 5, 2007)

Thanks for all the advice and best of luck to everyone.


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## Empty2 (Aug 12, 2006)

Hi girls,
Just a quickie getting   looks from DH!

Am now in tomorrow Sat morning and cannot have sedation now (as it is a weekend!!!!!), only told me yesterday!  Trying to stay calm, but difficult.  Will let you know how it goes in a couple of days!

Meadey - Good look with finding something abroad, I went on the 'renew' website for CapeTown, if that helps? 

speak later, have a good weekend girls!
emps


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