So upset, apparently my referral doesn't meet the criteria :-(

(25 Posts)
ILiveInAPineappleCoveredInSnow Mon 31-Dec-12 15:35:17

I've finally hit the lowest and most depressing point in my life :-(
I have lost almost 3 stones since may this year, not a lot compared to others, I know, but I have PCOS and it has been a huge struggle for me. I still have about 3 more stone to lose. I lose almost every week, but usually 1/2 or 1 lb, and that is with eating fruit for breakfast, salad for lunch and a really healthy dinner with at least half being vegetables (Slimming World).

I haven't been to class since the start of December, firstly because my son was ill, and then just because Christmas got in the way, and according to my scales, I have put on 5 lbs since then, including all the overindulgences over Christmas.

I saw my GP back in May as I had been TTC for a rather long time, and wasn't even having periods, and after I lost some weight, she referred me to the fertility clinic back in September. This morning, I got a letter through from my GP to say that the hospital wouldn't accept my referral, one of the issues being my weight :-( My BMI is just over 30, so not massive, and so many others I know with PCOS have had Clomid (which is what the GP says I need) at higher BMIs, so I am just devastated and don't understand. In fact a good friend of mine (also with PCOS) who lives 15 miles away, which takes her just into the next county, who has a BMI higher than mine, has just started Clomid after a recent referral.

I am also angry with the hospital that it has taken them from September until now to decide that I don't fit the criteria. I feel like my hopes have been raised letting my think I was getting close to being seen and then it has all just been snatched away. If I didn't fit the criteria, surely they could have written to my GP to say that in September :-(

I am now getting to the point where I feel that the gap between my son and a future baby will be too large if it doesn't happen now. I desperately didn't want him to be an only child, but he will be 6 this October, so it is getting to the point that even if I do manage to get pregnant, it will be like having two only children. It has taken me 9 months to lose these 3 stones, so I guess it will take the same amount of time again, in which case I am looking at a seven year gap between my DS and any future child.

I am just so depressed and feel like there is no point any more, even though they can see I have lost a load of weight, they wont even see me at the clinic :-( Not a great way to start 2013 :-(

nextphase Mon 31-Dec-12 20:14:04

Thats a fab weight loss. Congrats!
If clomid is what you need, could you afford a private script for a couple of months to see if the weight loss combined with a little boost would work? Don't know if you'd have to pay for the consultation also, but the clomid itself isn't bank breaking.
Fingers crossed your putting on weight for all the right reasons later this year grin

thinkfast Mon 31-Dec-12 20:15:56

A big age gap doesn't matter- there's 9 years between me and my sister and we are really close

RubyrooUK Mon 31-Dec-12 20:29:54

Don't feel depressed! Your weight loss is a great success and makes it far more likely that any attempts to conceive from now on will meet more success.

I went private for Clomid with DS1 (multiple reasons including it being close to my work so the clinic could track my follicles without trips to the hospital). Is that at all possible for you? It wasn't enormously expensive - nothing like IVF.

On the recommendation of the private doctor and the NHS, I stayed in the NHS system too in case I needed far more extensive or unaffordable tests in future. Then you would have that there as backup too.

And don't feel downhearted; stick with the weight loss. I had the opposite problem - got stressed and very thin which didn't help my fertility issues and I'm convinced that being able to maintain a healthy weight did help when I took Clomid so I was able to conceive DS1.

ILiveInAPineappleCoveredInSnow Tue 01-Jan-13 09:41:58

Thanks for the replies. I will ask gp about private script and see what she says. We can afford it, but probably couldn't stretch to ivf. We have about £10k saved so I can have a yr on maternity leave but I would go back earlier if we had to use the money.
Just got to keep on with the weight loss then :-(

Welovecouscous Tue 01-Jan-13 09:49:18

I live that is rubbish treatment - so angry for you.

Your weight loss is absolutely amazing and as a fellow PCOS sufferer I know how challenging weight loss can be with PCOS. You have upped your chances of conceiving massively!

Are you in London? In which case pm me and I can tell you the name of the private Gynae I saw with my pcos.

Can you ask gp if they will consider prescribing metformin? That can help with weight loss for people with pcos and my colleague has just started on it for that reason.

Un MN hugs to you.

xx

UnexpectedItemInShaggingArea Tue 01-Jan-13 09:49:27

Hello Pineapple (I love your name BTW).

Really sorry you've had rubbish news but don't get disheartened. Go back to your GP and ask them to explain.

One thought that struck me was that I wasn't eligible for NHS IVF because my DH already had a son, is this part of the criteria where you live?

Keep hope!

TWinklyLittleStar Tue 01-Jan-13 09:54:25

You've done brilliantly, and surely if your bmi is only a little over 30, you only need to lose a few more pounds to get into the range the clinic will accept?

I would challenge this, weight should not be barrier to accessing treatment.

SinkyMalinks Tue 01-Jan-13 20:39:18

Ditto what Winkly says - you've done brilliantly to lose the weight you have. A bmi of 30 is usually the limit, so you're so nearly there! Don't lose heart, do you think you could aim to get a referral resent in, say, feb, with your new bmi of 29.9?

Atilla - most (all?) units have a weight limit. I know you post a lot on PCOS so I'm sure you know that. There is evidence that hormonal treatment works better a lower weights (I presume because adipose tissue is hormonal).

God knows, OP, these fertility battles are crap. Good luck to you.

MadameJosephine Tue 01-Jan-13 20:45:04

Can you ask to be referred to a different hospital? My BMI was 31 and the unit I was referred to refused to treat me as it was over 30 so I asked my GP to refer me to a different unit where the criteria were different and they gave me 6 months of clomid treatment. Worth a try?

DomesticCEO Tue 01-Jan-13 20:51:42

I was going to say the same as Unexpected, I thought you couldn't have NHS fertility treatment if you already have a child?

I'm so sorry you're going through this though - I think secondary infertility is much misunderstood and my heart goes out to you x

RubyrooUK Tue 01-Jan-13 20:55:27

I was referred to the NHS infertility clinic at my local hospital after DC1.

Because I had a child, I would not have been offered IUI or IVF. It would, however, carry out investigations (and prescribe Clomid).

So I don't think it is true that they don't investigate fertility issues on the NHS at all if you have a child. But they made clear I wouldn't be offered any expensive interventions - IUI/IVF.

DomesticCEO Tue 01-Jan-13 21:04:39

Ah, ok, Ruby - that's where I was getting confused. I had IVF for my first DC and one of the criteria was that we had no children.

Can't remember much about the original referral as it was so long ago blush, all I do remember is that I didn't qualify for NHS IVF cos I was too young (at 33) angry.

Welovecouscous Tue 01-Jan-13 22:18:39

Where I was treated for pcos there was no clomid prescribed on the NHS if you had a child already - postcode lottery it seems.

RubyrooUK Tue 01-Jan-13 22:21:15

Yes, it does seem so random what you get and where. My doctor wouldn't prescribe Clomid (you had to get it at the hospital) but my friend could get it from her GP.

Which makes everything more confusing.

ILiveInAPineappleCoveredInSnow Wed 02-Jan-13 13:06:12

My GP wouldn't prescribe Clomid, but I am going to ask her if she will prescribe it privately.

I have an appointment with her tomorrow to discuss it, from her letter, it sounds like there is more than one issue, as she said "ONE of the issues is your weight" so I will have to wait and see what that is.

I had a Mirena coil after I had my DS, and I had it removed 2.5 yrs ago, and have only had about 4 periods since then. I can't believe that is solely down to my weight though, as when I conceived my DS, I was having regular periods, but my weight was about 4 stones more than it is now!

I am also going to ask her if she could refer me privately if she couldn't prescribe me Clomid on a private prescription, as I understand that Clomid is not that expensive and I have just had all the scans and blood tests, so I guess the consultation would be a few hundred? (Not in London by the way, but could you give me an idea of the costs?)

I know we are not eligible for IVF and IUI as we have a child already, and I am very grateful that we have a child, however it doesn't actually make it less painful that we are struggling to conceive this time. I feel like crying when a couple of my friends who clearly don't understand tell me I have one so I should be grateful (I am!!!) and stop feeling sorry for myself because some people can't even have one. I know all that, and I am so desperately sorry for people who can't have any children, but it doesn't take my pain away. That may well make me a selfish and horrible person, but it's how I feel.

My lovely hubby is on a mission today, dejunking the kitchen of anything unhealthy, so we are all back on it tomorrow. I had a lovely chat with my slimming world lady last night, who assures me 5lb on in a whole month off plan including Christmas is okay and I will shift it in a week or two! So here is hoping...... Don't know if I have to get my BMI under 30, or under 25 for a referral, as I have heard different things from friends who have been referred to other hospitals, but I don't know anyone who has ben referred to my hospital. Presumably the GP will know tomorrow, although she thought it would be fine when she referred me last time........ The receptionist who rang me said that the GP is cross that it has taken the hospital so long to even say this, and that she had referred people for Clomid before with a higher BMI than mine, so she was surprised it was an issue. Maybe they have changed the criteria sad

Anyway, thank you for the replies, hoping for some more clarity on the whole thing tomorrow.

Happy New Year everyone.

RubyrooUK Wed 02-Jan-13 20:18:42

Hello again Pineapple.

Glad to hear you are focusing on the post-Xmas health kick. You've done an amazing job losing so much weight already and anything that helps you conceive is a good thing.

My doctor wouldn't prescribe Clomid because she couldn't do the follicle tracking each month to check how it was working. Which makes sense as without follicle tracking, it's hard to tell how successful Clomid is being at stimulating ovulation.

The private clinic I visited charged something like £100-150ish for the initial 30 minute consultation. I brought copies of every single blood test/internal scan done on the NHS over the last three years. I asked my own GP for these and then pestered the receptionists endlessly and refused to leave the surgery (charmingly, of course) until I got photocopies of everything I needed.

This meant that the clinic didn't need to repeat the same tests (except to check ovulation etc) so saved a lot of money. Then I think a blood test was around £80 but I only had a few of these. Each follicle tracking session following Clomid was a couple of hundred quid, I think. I had three of these. Clomid was on prescription so very cheap.

It probably came to around £500 or a bit more, I think but that was with very few tests (as I had those three years of NHS tests/scans behind me). My consultant who was very kind explained every single test he was doing and what it could tell him, so I understood why any extra tests needed to be done.

And I conceived DS1 on my third cycle of Clomid at 100mg - the very first time I ovulated in three years.

So then the consultant saw me one last time for a scan at 7-8 weeks (that was probably another £100) and then the consultant suggested that unless I had a very complex pregnancy, it would be worth me proceeding with the NHS as private care for pregnancy/birth is expensive.

So that was my experience. Good luck at the doctor tomorrow. Try not to feel too down. All the things you are doing - losing weight and seeing the doctor - are steps in the right direction.

Welovecouscous Wed 02-Jan-13 21:44:04

I was told by my private Gynae that clomid should only be prescribed where there is both:

- regular follicle tracking (as this ups chances of conception and reduces the likelihood of multiple births because they can tell you how many follicles are developing. My clinic was aiming to reduce triplets born due to clomid.)

- regular blood tests etc to check you are ok on it

You can only take a certain number of months of clomid due to the health risks of taking it, so you don't want to 'waste' any of your months by not having the tracking which makes it more likely to work.

So because of the above the cost is more than a few consultations.

I am so sorry you are having such a worrying time sad People who think secondary infertility isn't upsetting are very ignorant.

RubyrooUK Wed 02-Jan-13 22:11:46

Just to add that CousCous is quite right.

The follicle tracking part is vital (hence why my doctor couldn't do it) to make sure Clomid is effective and of course to reduce the risk of multiple births. (I'd forgotten that bit!)

So it definitely isn't something you should shortcut. You can indeed only take it for a certain time, so want to make sure it is as effective as possible.

Just to be clear, I had all the tests associated with follicle tracking. I was just pointing out that bringing three years of blood test data with me to my private consultant did mean that he didn't have to retest thyroid function etc as I'd already had a lot of that done. Which was good in terms of cost, when I was anxious about the expense.

Welovecouscous Wed 02-Jan-13 22:14:30

Ruby I think your suggestion about getting as many blood tests as possible done on the NHS is very sensible.

AuntieMaggie Wed 02-Jan-13 22:28:29

From what my gynae explained to me the bmi limit is about success rate - as someone already said you can only take clomid for a certain amount of time which is why they are so strict about it and also associated health risks.

If your bmi is just over 30 I would try to get it under 30 as soon as you can to give yourself the best chance possible.

Good luck.

RubyrooUK Wed 02-Jan-13 22:35:20

Thanks CousCous - just didn't want Pineapple to think I was saying "get it all done cheap" without caring properly about it being done right.

Also I forgot the piece of paper I had to sign saying I understood the risk of multiples in using Clomid and would not be suing the clinic.....!

Good luck at the doctor Pineapple.

RubyrooUK Thu 03-Jan-13 21:32:58

How did it go at the doctor Pineapple? Hope you are alright - thinking of you.

Welovecouscous Thu 03-Jan-13 22:56:09

Also wondering and wishing you well.

x

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