# Should I be more assertive?



## Clare1004 (Apr 2, 2014)

I have been reading all the posts on this website for months so thank you to everyone for the comfort that you do not realise you have provided to me.

I am 34 and have been diagnosed with premature menopause. My partner and I do not have any children. I saw a consultant on 1st November who arranged for some tests and on 17th December, I was told I had a AMH of less than 4 and an FSH of 22. He said that I needed to receive HRT as soon as possible as I have many menopausal symptoms. He said that he was referring me for IVF and I would be eligible for NHS funding. In effect, I would be killing two birds with one stone as I would be getting the hormones that I needed and at the same time trying to conceive. However. I may need to have an egg donor if the IVF failed but I would have a chance in the first instance with my own eggs. He did not offer me Clomid, etc. as I would be referred for IVF soon.

About a fortnight ago, I was copied into a letter to the exceptional treatment panel asking that I receive funding for egg donation even though 'the cut off was an FSH of 15'. It would seem that NHS funding may not be available to me as my FSH is too high. The panel have asked for more information and the medical secretary will call me back when she hears something. I asked her if I have actually been referred to an IVF clinic to which she said I had not because the funding has not been secured. I feel like I have been abandoned and that I eventually will be in the menopause and my chance for a child will be lost. My menopausal symptoms have increased and I am also worried about my health and am keen for HRT. 

Has anyone else had a similar experience? I cannot understand how there are women on here with higher FSH and lower AMH to mine and are undergoing IVF. Am I missing something? If anyone has any advice for me I would be very grateful. Should I be more pushy and insist I am referred as soon as possible or does the referral take a long time? I feel like the Dr has gone back on what he said at the appointment. I read about women on here offered all manner of tests and medications, I have had some blood tests and a scan. I just really do not know what to do next or am I worrying over nothing that just needs to run its course and I will get my referral soon. If anyone hS any suggestions, please do say.


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## goldbunny (Mar 26, 2012)

sadly getting nhs funding is a total minefield/lottery.... some get it, some don't. many many people (myself included) just have to pay privately to get ivf. i hope you get help, but it might be worth investigating whether you could pay for treatment if the nhs let you down. it's easy to say 'yes be more assertive' but the reality is they can waste your time...unless you get help/answers soon it may get too late . it's certainly not impossible to get pregnant with quite low amh, if you want a shot with your own eggs go for it. really hoping you achieve your dream, good luck


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## Surfergirl (Apr 30, 2010)

Hi,

As gold bunny says, it's unfortunately a postcode lottery. I too have POF and had IVF with donor eggs. My FSH was 23 and AMH less than 1. We were not eligible for funding initially, due to our local pct rules, as my DH has a daughter already. However, the rules changed and we were granted 1 cycle. They never considered IVF with my own eggs as my chances of success were considered to be less than 10%, which ruled me out of funding for that.

Good luck x


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## Cloudy (Jan 26, 2012)

Often once the funding is in place the referral happens quite quickly (if there isn't a waiting list - but in my experience there wasn't any waiting): though there may be a wait if you do need donor eggs to get a match you are happy with. Basically what I'm saying is I think it's ok to push the PCT (especially if they decline you) but at the minute the doctor can't refer you for IVF as they haven't got the funding in place, if that makes sense!

I would have thought your GP could help you with HRT in the meantime.

It may be an idea to start looking at clinics and prices etc if you do need to appeal or go privately. However, you could also see if you can find out when a decision is expected, they probably meet to a set timetable of meetings so if you can find out when that will happen you will have an idea of when you can expect an answer.

Good luck honey, hope it gets sorted soon for you xxx


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## coweyes (Sep 4, 2008)

I may be wrong with this but basically when you apply for ivf/icsi its not done under exceptionality funding.  Yes applying for ivf/icis is a mind field as all different pcts grant different funding.  But thats the only reason why its a mind field (so to speak).  When ivf/icis is applied for you on your behalf you either meet the criteria or you dont, end of.  Ivf/icsi is not seen as exceptionality funding and does not go to a bord of people to discuss your individual case.  


Exceptionality funding is totally different then normal fertility funding, its judged by a board of people who look at your individual case and make a judgement on you and your situation.  My case went to exceptionality funding board when it was found out that i would need pgd, i was granted one go.  


It sounds to me as if you don't meet the regular criteria so your case is now being looked into by the exceptionality funding board.  I know that i was able to sign a piece of paper to say that i would pay for treatment if i wasn't granted any help there for i was referred to the fertility clinic.  They just want to ensure that someone is going to pick up the bill.


With exceptionality funding if you are refused treatment your be able to apply twice more.  The fertility clinics don't actually know that much about funding, they generally only know what each pct offers, so if your case is a little different their not the best people to seek advise from.  


Hope my post hasn't confused you further.  xx


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## Lilly83 (Jan 19, 2012)

Hello

I am funded for 3 cycles of ivf (I'm very lucky I know) my partner has a child, we used 1 go for own eggs but it didn't work, my FSH then jumped to 23, the cut off is 10 for own egg treatment, my AMH is 2, I had to apply to my CCG to transfer me to a private clinic as my NHS clinic could only do a donor cycle if I provided a known donor, the private clinic had unknown donors available, I didn't think there was a cut off for FSH for donor eggs I thought that was the whole point. 

As for HRT I haven't bothered, I'm unsure if its wise when you are hormones tests and fertility treatment, I had HRT when I was treated with the chemical menopause for endo (Prostap) and my god I needed it then, but as I am now I don't think I do
X


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## Clare1004 (Apr 2, 2014)

Thank you to everyone who has offered me advice and support. It is a really nice feeling.   
When I met my consultant in November he told me I was eligible for NHS funding for IVF. During my December appointment, he had the results of some blood tests and my AMH test and that was when he said that I had a very small number of eggs left. He said he would refer me for IVF but at the same time I had to consider over Christmas whether I wanted to try IVF with my own eggs and if this did not work to move on to egg donation or would I prefer to avoid the trauma of IVF, which has a very slim chance of success, and move straight on to egg donation. We obviously decided we would try IVF first. 

It was only when I received the letter about the panel that I became really confused and worried. However, I have not considered that I may have already been referred for IVF and this is my Dr being assertive on my behalf and putting the funding in place for if/when the IVF does not work. However, I have a feeling from the all the posts I have read on here that that this would be a little too good to be true. Therefore, your posts have made me realise that I actually need to check this first and go from there. I had never thought of seeing the IVF as something different. I want to contact the secretary again but have no idea what I am actually asking! Have I been referred for IVF will be my first question and then go from there. My mind was just working overtime and getting nowhere fast! 

To everyone who responded and, indeed to everyone on this site, many best wishes and lots of luck for your own journeys wherever you may be in them. To everyone on here who responded you have given me some different pathways which at 11pm last night I did not realise existed. Thank you xxx I will be back and looking for any questions I might be able to answer.


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