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.

I agree due to you age if paying for it yourself go for the one with the absolute best results ideally near you but don't discount one further away.

I had my boys at Care Nottingham and they had women flying in from abroad as I recall. If you're spending £3K it's foolish to try and save a few hundred if it's likely to be more successful elsewhere.

Care had fantastic frozen transfer rates when I had mine and it was only just becoming more widely used.FET will save you money so if the clinic has good FET rates it's another tick in the box.

Care have a good online forum.

Good luck!

I couldn't get any funded IVF at all .
We had to pay for 2 full cycles at a cost of nearly £10,000 ouch .
Out of those 2 separate attempts we got ...
2 children . A boy and a girl .
Very expensive little people indeed!
I would never advise IVF to anyone .
It has a huge financial , emotional and physical cost .
It also places horrendous strain on your relationship and your finances .
If you feel however that you can both bear that strain , then words can't describe how worth it is .
What's happened to you is a set back .
Think of it in terms as purely that .
A setback .
You could now start researching the HFEAs rates of successful births in different clinics closest to you if you feel you can start taking some positive action .
I hope all works out well for you .

sugarpaste Care Notts is where I had my treatment - 2 separate cycles , the first cycle a DD, the second cycle a DS .

OP, yes you should complain. it wasn't explained fully. I have had 2 rounds of successful IVF (privately) but had an awful battle when I finally became pregnant and asked my dr for the drugs to sustain the pregnancy. I had my treatment in Ireland and the 2 rounds cost me £20k.

I then came back here and got my BFP only for my dr (who knew I was undergoing IVF) to refuse me the drugs I needed HcG, Progesterone and something else to support the pregnancy.

I literally collapsed and had to call the PCT to explain and seek their approval (bloody joke!) and more importantly I was willing to pay, but couldnt find a private dr. I was so upset I burst into tears at the dr, had a panic attack and refused to leave until it was sorted.

it was a stress. I sometimes feel we are treated as non people going through fertility treatment/

GOod luck, it can happen xxx

Re ARGC they were about £8k each. They are v pricey as they pretty much routinely test for all sorts of stuff (immune related usually) and then treat that as well as doing the IVF. But they get consistently good results despite being the last hope for many people - most who go there have tried and failed elsewhere.
It is expensive. But the most expensive cycle is the one that doesn't work. You also have to factor in that they want to see you every day for St least 3 weeks so you have accommodation and travel on the top. But at a 40% success rate for your age group is still your best shot. As I say other alternatives are UCH CRM and The Lister, but I don't know about their pricing.
Re tests you've already had done, assume that you'll have to have them all repeated as each clinic likes to do things their own way and will look at different parameters.
There's lots of info and experiences on www.fertilityfriends.co.uk
Also we didn't have to wait for our notes from our GP as Argc start from scratch. There's a LONG waiting list, so ring today if you want to be seen in the next few months.

By way of hope, I've posted on FF and another board about ttc/IVF for about 6 years now and in all that time, and the hundreds of women I came across, only 2 haven't made it to motherhood yet. One had insurmountable cervical problems and the other is adopting. Every single other girl got there in the end. (Even me - still surprises me daily after years of waking up almost vomiting with fear about childlessness!) Hang in there!

mightbethehormones I would advise you to not make a bit of a fuss but to raise merry hell. If you don't know the name already, find out who the fertility funding manager for your pct is and call them. I was on first name terms with mine. Don't rely on your GP for help, I was educating mine on the process. All that said, I would if you can at all manage it see if you can get some private advice or assessment. The NHS has great protocols for people with blocked tubes but for those of us with immune or blood issues, they're not so great in my humble and limited experience. Oh and if I had a pound for every time my ovaries couldn't be found, I'd have funded a cycle. I ended up at the lister which is about 6k for a fresh cycle including all tests and I was on 300 of menopur so a big drugs bill. I'm 28 weeks today so another (fingers crossed) success here.

Great advice and happy news Beginnings! x

I'd definitely kick up a stink Mightbe as I think you have been treated very poorly - your clinic were aware that you wanted to use your IVF 'tries', so given your age and the cutoff age for treatment I would have expected them to forego the IUI altogether. We didn't even try IUI as my consultant (a very senior person in assisted conception in the UK) didn't think much to it at all, despite me being supposedly an 'ideal' candidate (26 at time of treatment).

In the meantime I'd think very seriously about self funding if you can afford it. We had one round of IVF (short protocol), which cost us around 4K and had treatment at Care Manchester which I can't rate highly enough. I was only eligible for a single egg transfer as I have cervical issues but was lucky enough to get my wonderful 10 mo DS as well as 6 frozen embryos to use at a future date. As it happens we have had a 'natural' surprise and I am almost 4 months pregnant with a second DC so miracles really can happen!

I hope you have success with your complaint. I found treatment itself to be a piece of cake (I know others found it very difficult, but just to give an alternative perspective), and could have done it 10 times over if the funds allowed. I really hope you get the child you are hoping for through some means. We had been thinking about adoption if the IVF didn't work as we know a couple with beautiful adopted toddlers who have had a brilliant experience.

Anyway, waffling now... but good luck to you!

Thanks BagofHolly :). Trying to enjoy it!

YANBU to be upset.

Don´t know about a complaint, though.

Unless you were coerced into the three tries at IUI.

Were you expecting/hoping to be booked in for IVF at the same time in case the IUI didn´t work?

Surely one thing has to be done at a time and it is sadly very unfortunate for you that the timings have worked out as they have?

I think there is a difference between making a complaint and not allowing oneself to fall victim to bureaucracy and waiting lists. Maybeitsthehormones is under 40 for at least another five months. I completed a failed fresh cycle, a successful fresh cycle (which sadly ended in miscarriage) and a frozen cycle between December 2010 and June 2011 so a lot could be achieved in her timeframe. I learned something new every time and thankfully the next one was the one that worked.

I'm suggesting not taking no for an answer. And it's not pushing to the top of the queue or denying anyone else treatment, it's about making sure the system works for all who need it. For instance, Guy's NHS clinic has no waiting list, but you do need to extremely actively stay on top of the process to make sure your letter isn't unnecessarily sitting in a pile for weeks and weeks.

Thanks to everyone for their advice. I'm feeling really unwell today (maybe as a result of the increase in the Menopur as it seems to aggravate my existing condition) so forgive me for not writing much more at the moment. I feel as if things are working as I feel very swollen and I am getting tons of EWCM so who knows what is going on. I am not giving up yet and will take everyone's advice on board.

In my opinion you should complain and make as much noise as you can. i have has three ICSIs. The first was an NHS shambolic experience and I wish I had complained (won't go into details) but we ended up going private as I couldn't face the thought of another NHS one!

Good luck - I know how you are feeling - I hope it all works out for you x x

Mightbethehormones. Good luck. I think you should complain and think about contacting your local MP. My OH did once about something and they were very helpful.

Good luck OP.

Just wanted to to update everyone who was kind enough to post on this thread when I was really down the other day.

Today I went back to the clinic and, at first, it was the same story - one missing ovary and hardly any response on the other, just two small follicles. And then, after a bit more scanning the missing ovary turned up and showed at least eight good size follicles. So it is all speed ahead for egg collection on Wednesday.

IVF is such a rollercoaster but I am one bit closer.

I would write a letter of complaint.
Ages ago I was told by the doctor that 2 cycles of IVF would be funded. So I waited three frigging years (long waiting list), first cycle didn't work and then they said, oh we only fund one cycle. I had nothing in writing and by then I was 34. It is the only time I have wept at the doctors surgery. I'd never have waited that long for one cycle. I really share your frustration but you have to look forward now and the best of British luck to you!

Mightbethehormones the very very best of luck for Wednesday. I'll be thinking of you and your DP! Let us know how you get on.

Thanks Fossil & beginnings and thanks to both of you for sharing your IVF stories, it helps to read about others' experiences - I can't believe some of the things some of us have had to go through. Was watching the One Show last night (I don't usually so it was weird I caught this) and they did a whole section on IVF and the postcode lottery. It's terrible to think that some people are given no funded treatment at all simply because of where they live.

Beginnings, so glad it worked out for you and best of luck with the rest of your pregnancy and the birth.

Fossil, did you go on to have private treatment? I hope you had some luck after all the stress. That must have been awful for you.

Oh bugger, had name changed but have now outed myself, spectacular fail!

Oops.
Wishing you the absolute best of luck with all your treatment this week.

Glad to hear this update and good luck OP, I so hope that you will get what you want.