What should I do

[noggin-the-nog]

Hi All,

I am new so please be gentle with me.

I am due to start down regging tomorrow but have come across a bit of a problem.

We are going through IVF on the NHS and have been thrown in at the deep end a bit. I have been advised by several infertility clinics (inc the one we are to be harvested in) that because of my age we should have a PGD for Downs Syndrome, when I eventually managed get hold of a nurse at the at the NHS she said that they don't do them.

I don't know what to do now! Has/is anybody else having a PGD?

I am already panicking about having 3 injections a day (IM ) and I feel incredibley stressed without this extra worry.

Any advice PLEASE

[Caty]

Firstly, welcome aboard!!

I am sorry I really don't know about this but are you able to simply pay for the test (is it a straighforward test?) privately but still have the IVF on the NHS?

[noggin-the-nog]

I don't know either, we have not had any contact with the IVF clinic only the fertility unit in the hospital and they say everything has to go through them.

To be perfectly honest though the cost is mind blowing its £4700.00 just for the one test.

I'll wait for hubby to get home, have a cry, and see if he can get anywhere with them tomorrow. Unfortunately they are so hard to get hold of, the clinic is only open a couple of days a week and even then you only get through to an answer phone.


Sorry I sound like a whinger.

X

[Caty]

NOOOOOOOOOO way, really? That's more than the IVF itself!!!

I would get on the phone to them and find out some answers. You could do with any added stress. Please let us know what happens. Take care and I hope you get some decent answers and get this sorted.

May I ask how old you are?

Did nobody tell you? Whinging is one of the criteria for joining this board! We all have to whinge otherwise we would go completely loopy!

[noggin-the-nog]

I turned 40 in March. We were fast tracked (if you can call it that ) because we were meant to have gone through this 2 years ago but they kept loseing our notes (yeah!!) One time we didn't hear anything for 4 months (despite numerous messages left on their answer machine) and when I did eventually get a phone call it was because they said they had lost our telephone number (what!!!).

Any hoo, we actually manage to get to see the doctor in Feb this year (thanks to the intervention of the PCT) but because I was 40 in a couple of weeks we were turned away because the cut off limit with the NHS is 40 (I would not have been 40 of course if they had not kept loseing telephone numbers, sending us for the same blood tests 3 times, they kept loseing them as well etc) Again the PCT came to the rescue and said that we could go ahead because this was the Hospitals fault.

We have had no other tests or treatments apart from a HSG for me, which came back as both tubes patent, and a sperm test for DH which showed more than enough viable sperm.

I have been put on the Bursealin injections starting tomorrow, which I am not sure about on 2 fronts, the first being it is meant to be started 7 days before you are due to start your next period, I told the nurse on several occasions that I only have a 23 day cycle and I would start my period within 2 days of being on it, but she said it didn't matter (well they are the experts) and the 2nd point I am worried about is that I am down regging till June because they (doctor and nurse) are away on holiday!!!? so there is nobody to check my womb lining.

There are many other things that has really frightened me regarding our treatment so far. I know I should think myself lucky that I am entitled to anything on the NHS but I feel sooo vunerable at the moment and as this is the first sort of treatment we've had I don't know the protocols etc.

Love Helen XXX

P.s As for the PGD cost check out "The Bridge" clinic and their price list that's were we are going for egg retrival.

[Mitzy]

Hi, I am on a NHS IVF at the moment, and will be 40 in a couple of weeks, I also normally have a 23 day cycle, and they told me to ring the day I started my cylce, this I did, and was given the 20th of march, I came of the phone and thought that they never asked about my cycle and I rung them back, they then re-organised my date and I was seen on the 10th instead. I would ask if you could talk to someone more senior, no body as mentioned a test for downs, surely that would only happen if you are succesful.

You could also call your PCT and tell them of your worries, that way you might get some answers.

Don't worry too much, once the ball is rolling, it will all be fine.

Good luck, and join the rest of us on the busier general forum.

[Emma27]

Could you not be treated by another hospital as they sound a bit uncaring to be honest, luckily i am also recieving NHS treatment and the nurses and staff are lovely always happy to chat and go over any fears you may have, in the 2 years that i have known unit there has only been 1 nurse that i did not like, and she is not there anymore.