sooooo annoyed

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kas123
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Posted: Thu Jul 18, 2013 12:19 pm 
Post subject: sooooo annoyed
I have just been informed that the waiting list for a first appointment for IVF has increased from 6 months to 8 months. i then asked what the waiting was like after this and was told 19 months which will put me at 40 and too old for IVF. how can it take so long do they not see poeple in order of agency. Sorry to say but surely i am more of a priority than a 20 year old as my clock is tick and we have been trying for over 5 years now.

I have just put myself back on the pill as my gynea wiped his hands of me in december last year once he refered me. I ran out of all the drugs i was on in march and my doctor will not prescribe them for me as they were a bit controversial anyway.

I had 5 miscarriages in the first year of trying and nothing since the drugs are meant to dull down my imune resposes and stop my body attacking the baby. But since i have been on the drugs i have not yet got PG.

Sorry rant over.
DL05
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Posted: Thu Jul 18, 2013 1:42 pm 
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Rant away Kas, I'd be fuming and devastated Confused This came up before with someone else recently as well and I know someone who is 25 might think well I've been trying for x number of yrs so my need is as great as yours, but as you say as you get older you don't have 2 more years to wait especially not if that will push you over the age limit, although i'm sure I remember reading it's been put up Question
When I was discussing IVF with a cons I had in Manchester he was saying that as far as the NHS goes often the times quoted are maximums and they find some women will come off the lists as they either get pregnant naturally while waiting or moves to a different PCT or decide to go private so the wait is often not as long as quoted, but I'm sure that's no consolation to you at the moment Sad
What is it that they say is causing this immune response ? Is it possible that there is something else you could try that perhaps your GP could prescribe Question I know there are some herbals as well that are supposed to be good tribuls terrestis for one, which some people with issues with anti sperm anti bodies (male and female) have had some success with Question
I fyou have no luck with the GP and the clinic you've been referred to I'd ring your gynae's secretary and let him know what they're saying as he might be willing to contact them and get things shifting for you xx
XXMrsSXX
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Posted: Fri Jul 19, 2013 3:06 pm 
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I actually agree with u Kas i had ivf at 25 and to be fair i think it should be taken into account biological clock as like you say, you may not get much more opportunity... i feel for you, but my understanding was as soon as they recieve the refferal i thought targets were 18weeks or so (may take longer with signing of consent forms etc). Also, i would change gps and seek help from another gp (may or may not help if u are having the refferal already but worth a shot).
Also, havent they raised the age to 42 now? xxx i hope it gets sorts, but i would maybe ring the clinic and ask for advice re timings and explain your situation and see what they can do to get resolved, for me the refferal was started in may... and had my first cycle in january of this year... so almost 8 months but they dragged their feet with me, and i went to leeds xxx good luck xx
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charleelou
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Posted: Fri Jul 19, 2013 4:45 pm 
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Oh no Sad

This has totally just p'eed all over my parade!! We got referred 3 weeks ago and was told we would get a letter through the post!!

Do you mind me asking what area you are in? I have to admit iv seen a lot ofbout the 18 weeks before treatment so 8 months just for an appointment seems quite a long time. I asked the Dr when they referred us and she said its you meet the criteria quickly and they are happy with everything it can be quote a quick process.

I think you need to call and find out cause i know if your like me it will play on your mind x
KazM
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Posted: Fri Jul 19, 2013 5:36 pm 
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Waiting times in different places vary so much though. Wait is 6-8 weeks in my area so completely different so I'd check in your area charleelou.

Kas - NICE guidelines have changed so you should be entitled to a round of IVF even at 40 as the cut-off is now 42. If you get no joy exploring other avenues and feel you're being treated unfairly there's always PALS to speak to who may be able to help.
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kas123
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Posted: Mon Jul 22, 2013 12:56 pm 
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the age thing has changed in our area it has gone from 38 to 40. I am in Wales and they only have two clinics to cover the whole of wales although the new clinic that opened in April still doesnt have a licence to do IVF so can not do anything and the Doctors that work there also work at the Cardiff IVF clinic so only on a part time basis. I have an appointment on saturday at a private clinic but think it will cost too much. hoping that i may be able to get the NHS to pay for the drugs which will at least bring the cost down to £6000 for three goes.

can not even change doctors as there is only one practice in my area.

Nat:- i have a form of lupus that is causing the auto immune problems. the drugs that i am on are experimental and my doctor has aready said that she will not prescribe them.
DL05
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Posted: Mon Jul 22, 2013 3:02 pm 
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Ahh I see, I'm sure that if they can't provide the services within the time limits they are supposed to pay for you to be seen at a private clinic ?
I'd have a look on the web for the NICE guidelines for IVF as it's amazing how they can change their tune when you quote those, really if they can't stick to the waiting times in their own guidelines they should pay for you to have the treatment at a suitable clinic .
I have to admit that I don't know much about Lupus even though I have a cousin who has it except that it is auto immune but during research to try and ease my FM symptoms I have read that some things that help with that can also help with Lupus , one surprising one is DHEA which is also used for fertility its a sort of steroidal pre hormone and a lot of women who are undergoing IVF take it to give their eggs a boost, you make more of it naturally when young so a lot of peoples levels drop with age, I've been taking it being 43 now Rolling Eyes but i'm switching to pregnenolone which is a pre cursor of the DHEA even , they're both like a more natural form of the steroids they use to treat some conditions but of course I'd always say do your own research before trying anything .
DHEA on it's own though has been shown in studies to reduce the number of chromosomally abnormal embryo's produced and reduced the miscarriage risk Question
This whole postcode lottery thing is a joke though isn't it , if it's available on the NHS then everyone should get the same treatments or be referred to somewhere that can do them, Good luck getting it sorted out xx
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