To be so upset about losing second lot of funded IVF treatment through no fault of my own

[Mightbethehormones]

I am usually pretty unflappable but I am so upset tonight that I've had to post on here - and I've never posted on IABU before.

DH and I have been going through the infertility rigmarole for five years now. It has been a long and torturous process mainly because I had (non-fertility related) health issues that make everything more difficult before we started and then I was found to a benign pituitary tumour during the process that lead to us having to stop TTC while I was was treated and my condition stabilised.

I am now 39 and I have been very lucky in that my local authority grant women under 40 three funded cycles of IUI and two of IVF. I received most of the initial fertility assessments at my local hospital and then last year I was referred to a clinic that is about two hours' drive away for IUI & IVF. Every time I went to either my hospital or the clinic they would seem to have forgotten how old I was and when I brought it up they would seem surprised and say I looked young for my age - every BLOODY time. Usually this would be flattering but not in these circumstances as it seems to have affected my treatment.

It was agreed and written in my notes that I would initially try the less invasive treatment of IUI and would then progress to IVF. Sadly, IUI didn't work for me and when I brought up the subject of IVF before Christmas I was told it was 'too late' to go ahead with it now as I wasn't in the system and the clinic was fully booked up until after my birthday (which is in early June). This was despite me saying that I wanted to go ahead with IVF if IUI didn't work months back - and stating again that I would need to do this before June of this year when I was was forty. Then there was a cancellation and I was able to start IVF last month.

Today I went to the clinic and they couldn't find my ovaries (don't ask!) so I have to take six more days' worth of a higher dosage of Menopur and then they will scan me to see if there are any follicles. If not, the IVF will be cancelled and I was told very abruptly that I almost certainly won't get the second chance of IVF. I am so gutted as I had no idea that I wasn't on the list for IVF, I thought I would just progress to it after IUI - no-one told me that by continuing with the full three cycles of IUI I was putting my chances of IVF in jeopardy.

I just don't know what to do. Am I being unreasonable to put in a complaint. I'm not a whinger generally but I just feel so low that I have lost my final chance. I suppose I could be referred to another, larger clinic but it would be very short notice and I don't know if I would be any more likely to get treatment there either.

No you are not at all unreasonable im on your behalf appeal this to your pct these circumstances are not your fault and you deserve your shot just like everyone else!

really sorry to read your post. fraid' i can't offer much just support. i had two lots of iui, neither worked, i saved and paid for mine, no chance of me having at the time got any free treatments due to age i guess, don't regret it either as i at least tried. is there anyway you could save and have one pop at ivf yourself? i can't remember how much it costs, i know it is a few grand, at a guess £3,000? if i were in your shoes (if i worked and were able) i would try and save just to have one try although not good to get into debt. i have known people get into serious debt having try after try, i don't know anyone who had ivf for free. btw, i don't think you are too old. different fertility places say different things. some women ie 42 have ivf and even though there is a much lower success rate the fertility hospital will still do it, i guess if it is on the nhs that is totally different. would you consider trying to save up for one round paying yourself and using someone else's eggs? just a thought. i hope it all works out for you

You would definitely not be unreasonable to write a letter of complaint and probably explain how upset this has made you.

That sounds more than annoying - I can't imagine being in your situation. Could you get a referral to a different clinic which could fit you in before June for the second round if necessary?

I can absolutely understand how and why you are so upset.

Firstly, don't give up hope. Everything might work out so that your first round of IVF will go ahead and be successful. Failing that, you may well get a second shot, despite what was said today.

On the other hand, this is probably one of those situations where you need to pull every string, and kick up any sort of fuss that you feel is necessary. If you let stuff go, you'll be forever wondering 'what if'.

So you could push for a referral to another clinic, or make a complaint about the information you have not been given so far. Anything to keep yourself in the system, and your options open.

Good luck.

Thank you so much to everyone who has responded so quickly, I appreciate the support so much, it has just been such a long journey and I feel quite tearful.

I think I will kick up a bit of a fuss as, who knows, it might persuade the clinic to fit me in somehow. If not, then I will asked to be referred elsewhere to a bigger clinic that might get a cancellation. I am just soooo tired though and part of me just wants to crawl into bed and stay there for six months.

I know I am so lucky to have had funded treatment, I do appreciate that. There seems to be nothing wrong with DH and I fertility wise so I guess my body just isn't that well and maybe that is what is causing our problems.

DH is worried about paying for treatment in that he thinks that once we start it will be hard to stop and we could end up with no baby and thousands and thousands in debt. I could probably talk him into at least one round of paid treatment but I'm not sure it's right to pressure him - he is a fantastic husband and has been brilliant through everything but has often said he is just happy being with me and anything else is just a bonus.

Definitely complain to your PCT. Once you are in the system you should get your treatment.

YANBU. Complain, going through PALs, and threaten legal action. I know that seems extreme but they are hindering you in your chances to have a child.

I really feel for you.

It took us 7 years and we were advised against IUI at my clinic as being a waste of money due to us having to fund it all ourselves ie IVF more likely to work.

Whatever happens I'd do another IVF.Can you beg or borrow?We were told IVF even when it doesn't work is worth doing because you can find out so much more eg egg quality.

It might be worth asking for ICSI incase there is a fertilsation problem just to be on the safe side.We had had both just incase.Also you can have any left over embryos frozen.We did and a year after our fresh cycle failed had our last 2 very ropey frozen embryos who just survived the de-frost implanted and my 8 year old twin boys are now in bed reading as I type.

Don't give up,do whatever it takes.If you can stretch to 3 cycles do it now as you won't get the chance later and also the sooner you get on the adoption cycle the better. Sorry to be so hard but those are the facts.

I'd also complain and say you'll be naming names of people who dealt with you as they are to blame. However that ends let it go as you need to concentrate on getting pg not getting worked up over a battle.

I think they've let you down and need to give some answers so yanbu.

Hang in there.We have it in writing that it would be very unlikely I ever got pg and I had 3 in the end.

YANBU. You would be justified in complaining, but be careful how much time and energy you put into it, before perhaps thinking about moving on to paying for it yourself. I understand your husband's concerns but it doesn't have to be "endless". You could agree beforehand that you will try X number of cycles.

Paisley, I meant to say I'm so sorry your IUI didn't work, it's tough isn't it?

Mrs Heffley, so glad to hear you got there in the end, it's stories like yours that keep me going.

Exactly what popcornbuscuit said. This is a bit rushed but basically, IUI is crap, maternal age is the biggest factor in fertility and whilst you have every right to feel utterly let down by your local health service, unless they were referring you to a tip top clinic, they might have bizarrely actually done you a favour by forcing you to go for private treatment at a clinic with a great success rate.
All the success data is on the HFEA website. At 39, dont piss about with anything other than the best you can afford. Have a look at Lister, UCH and ARGC in London and Care in Nottingham.
Very best of luck.

BTW, we had 2 cycles of IVF, at 38 and 39. Got a singleton and twins. Three for two! Bargain! All from ARGC.

Thanks BagofHolly, that's great advice & great rates at ARGC. So lovely to hear about your DCs. Sorry if I'm being nosey but could you give me a rough idea how much it costs per IVF cycle with everything included, there are so many additions etc on the ARGC price list. For example, DH has had semen analysis and all was fine so I guess we wouldn't have to do it again?

Sorry you are going through this. It sounds as though your options were not well explained and you should get the IVF cycle.
I do think it is often the case that '(s)he who shouts loudest gets listened to' in these cases, so unfortunately the best way to go may be to kick up an almighty fuss and pull out all the stops in the hope that someone decides to let you take have the treatment.

Can you request a copy of your notes- might help in your complaint and will let them know you are very serious about complaining.

Wishing you lots and lots of luck with this, don't stop hoping.

Have you also looked at fertilityfriends web site, there will a huge amount of support n this area for you.

I would say do everything in your power to take control of the situation. If you can self fund do it now don't wait. You have been let down but you haven't got the luxury of time to sit around waiting for someone else to do something - you need to get on with it and drag your DH with you. You will regret it if you don't grasp the nettle now. Money is just money if you get into debt and you get pregnant you will never regret it and if you don't get pregnant you will never regret trying your hardest Set a reasonable amount of attempts and just go for it.

In my area, any fertility tests are good for two years. You can also get some routine tests done at the GP which can save a few hundred quid - stuff like rubella and hiv. Your GP might not do it but its worth asking.

You'll need a copy of your notes anyway if you're going private - this takes a while to get, so you might be best putting in the request now.

And remember all is not lost for this cycle - have plenty of fluids and protein, fertility friends has loads of tips for stimming.

I ended up going private even though we had NHS goes left because the unit was such a nightmare - we never knew what was going on from week to week, they'd promise us we were booked in and then we'd phone up to confirm dates and they would say they were actually full. This made a bad situation a thousand times worse - I'd had depression after a miscarriage and started getting all the symptons again because of all the uncertainty, so we moved. I found I coped much better after that, and it took me several goes but I'm now 25 weeks pg.

Good luck - one shit clinic doesn't meant the end of all hope.

Please hang in there, i had one round of ivf treatment at the age of 38 and was incredibly lucky that it worked first time. You should definitely formally complain

Yanbu and sorry you are going through this. Iui is sadly a real waste of time in most cases. Did you produce good follicles with it? Your ivf experience sounds like you could be a poor responder. (i was in my three attempts and first cycle was cancelled.)
whatever happens with the public funding, it is hard not to give it every shot you can afford, or you might want to consider donor eggs if yours aren't cooperating.
best wishes.

Thanks again everyone. You've all made me feel better and given me lots to think about.

Panda, that's very helpful, thanks. Sorry to hear you had such a nightmare experience at that clinic.

Chandellina, the IUIs were done without drugs, I thought this was odd at the time because when I read online most people seemed to have drug-assisted IUI. This is the first time I've taken any kind of fertility drug. I did have a problem with ovulating when I had the pituitary problem but since that has been controlled I ovulate regularly (I take cabergoline & hydrocortisone for the pituitary problem).

What area are you in? It's my understanding that the fertility units have to 'win' contracts from the PCT to carry out the NHS cycles. I would contact the PCT and explain your situation to them, they should be able to tell you which other units you could go to and be funded and that don't have a waiting list.

Obviously before you move units you need to wait and see what happens with this cycle. If they can't 'find' your ovaries because you haven't grown any follicles then increasing the dose and waiting a week is all you can do. Hopefully the follicles will start growing and at least you will have a chance. However if your ovaries aren't working so well and you have to self-fund your next cycle then I would think carefully about using donated eggs. Your success rate with donor eggs would be around 50% per cycle compared to around 15% for the average 40 year old...... Fertility friends has a lot of info about having this treatment abroad - no waiting lists and often less expensive than treatment here.

OP, I understand your frustration. 6 rounds of IVF (none funded) and I swear the hardest part was trying to organise getting onto the clinics calendar!

With an IVF attempt on the radar though, I'd strongly advise you to stay focussed and as relaxed as you can. I know that I got quite crusadey at cycle 3/4 and looking back I'm certain that helped at all.

I agree that you should ready yourself for a future attempt. Channel your frustration by diarising the events to date in writing and submit it to the head of your PCT.

Meantime, I truly hope your current treatment is a success.

Shelby, I am in Cumbria.

The thing is I can feel a lot of pressure around my ovaries and the lining of the womb has definitely thickened so I don't know what's going on. The nurse just seemed to really struggle with the internal scanner (haven't had any problems having ovaries found before) and said that if there are similar probs on Monday they will use the 'big' scanner to see exactly what's going on.

To be honest, I feel a little like I am going to OV and have had what looks like the beginning of EWCM so I am very confused!