Back to the drawing board! - Fertility Network UK

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Back to the drawing board!

Rach2585 profile image
13 Replies

Well after waiting weeks for a fsh result, it seems that I am back to the drawing board. This was my last hope of being offered funding through NHS and I've had no joy. My amh reading was 0.68 my fsh is 16.1 and when I had my hycosy they found 2 follicles on my left side and one on my right! According to the specialist, I have a minute chance. Has anyone had similar readings and got pregnant? I am currently looking into acupuncture and also going private. Myself and my partner can afford one try at ivf so I am pinning all my hopes that somehow this produces a positive. I'm trying to keep positive which is why I'm asking you ladies so as I can keep up hope!

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13 Replies
72cloud9 profile image
72cloud9

Oh Hun sorry that u are not getting support from NHS. I didn't get any help due to age (so low amh) so can't really comment on how they judge results. I'm currently on 2ww so can't tell u if there's a chance but I'm sure there will be plenty of ladies on here with different stories for u.

I know u may not be ready for that yet but have they told u that they could fund a donor egg cycle if they won't fund own egg cycle!? At least if you knew you had that in the back ground might make it easier for you to know whether to take a chance with your savings on trying once with a private clinic with your own eggs? X

Rach2585 profile image
Rach2585 in reply to 72cloud9

Hi,

Thanks so much for getting back to me. She did mention about donor eggs but (not that I'm dissing people who choose this) for me it just wouldn't seem right. They said that the baby would have a genetic right to know their parentage and plus it wouldn't look anything like me. I think if I had a choice, I'd rather go with my own eggs and then take it from there. They wouldn't find the donor cycle anyways, that again would have to be paid for privately due to my levels not being in tolerance xx

72cloud9 profile image
72cloud9 in reply to Rach2585

oh im sorry to hear they are not open to helping you with other options. The choice of donor (that may be one i still need to consider) is one I also struggle with - I dont think you can know til you know you have exhausted all your efforts to try with your own eggs and it doesnt sound like you have been given that. My chances are slim and I know this but at least my consultant said to me every woman deserves the chance to know they have had the opportunity to try with their own eggs before looking at other options but then I had to go to Greece to get that kind of empathy - u will never get that from the NHS. I think for your own peace of mind you need to know you tried.xxx

Rach2585 profile image
Rach2585 in reply to 72cloud9

I completely agree! Keep me updated how you are getting on. It would be nice to know someone is starting a similar journey to myself xx

72cloud9 profile image
72cloud9 in reply to Rach2585

will do and you to. if u dont have any luck with uk clinics when looking, I can pass you the details of who I used in greece- its a little more complicated going abroad for own egg treatment just because of never knowing exact timings to book time off work etc but doesnt really work out more expensive in my experience and I found the level of care and understanding much better. Also if you have all your blood results you may find they wont charge for initial consultation which I did thru a co-ordinator. I never paid anything for them to give me their opinion on what my options are x

Orla9298 profile image
Orla9298

Hi lovely, it's so upsetting finding you're not eligible for funding isn't it, it just seems so unfair. I had an fsh of 22.5 and my ccg want it below 8.7.

I just wanted to let you know the success I had with lowering my fsh, which will supposedly help my chances in ivf. I can't even believe it but I got it into the boundaries and even though I was all lined up ready to go with my chosen private clinic, I scraped into nhs funding.

Over a 6 month period I got my fsh down from 22.5, to 14.5, it then wavered up to to 17.5, then down to 11.7, 9.2 and now below 8.7. I think I mainly attribute this to the medical herbalist I am seeing, who makes a mix of all sorts and includes vitex, but also acupuncture. I believe it's the herbal blend that has done the most help, and you need 4 months minimum to get the max benefit from vitex. You can test your own fsh using the medichecks website and get the results within 2 days for about £30 so I found it reassuring to keep track.

Amh does also give different readings due to lab differences too, my consultant agreed to retest mine, I've had 2.2 at first, then retest was 4.56, and now 2.7. I know someone who's has fluctuated even more.

I really feel for you as you feel so let down when you aren't entitled to treatment just due to numbers. But I just wanted to give you some hope that you might be able to help yourself.

I know my ccg will still offer you 2 nhs funded goes if you have had one private, if you have 2 private they will then only fund one, and if you do 3 or more they won't fund any. It might be worth you finding out your ccgs stance on this? As you may get your fsh down enough to qualify but could try private in the meantime.

I'm just starting my ivf now, I had 4 follicles one side and 3 the other when I had the scans that you refer to. I have it in the back of my head that if my own cycles don't work, we will move to donor egg and I'm ok with that. My egg collection is scheduled for w/c 13th march if this cycle gives a response.

Just to tell you something else we were doing when we were oringinally going private, we had registered as a sperm donor with our private clinic - you donate sperm and they will do your ivf for free, you just pay for the drugs. That may be of interest if you can only afford one private. This would mean you could afford two as you'd be looking at each cycle costing half as much as the drugs you'd need would be quite high dose like me. Feel free to message me if you want to know more.

It does only take one egg, people keep telling me, so don't lose hope!xx

Rach2585 profile image
Rach2585 in reply to Orla9298

Thanks so much for getting back to me. It really is disheartening when you hear that they won't fund you because of numbers. I'm currently looking into acupuncture and reflexology as I've heard some good things about them. Thanks for the heads up on the fsh testing, this will probably come to some good use when I have to start payin hundreds for tests! I didn't know anything about the sperm donation so that is something I will need to speak to my partner about. It's seems like a good idea though.

I hope all goes well with your next appt on 13th x

DianeArnold profile image
DianeArnoldPartnerNurseFertility Network UK

Hi Rach2585. So sorry to read that your AMH and FSH are rubbish at the moment. Obviously you are looking to try privately. It might be worth enquiring about using the drug DHEA prior to commencing any treatment. It can help with releasing a few more eggs during stimulation. Regarding your cysts, they may need to be drained prior to any treatment, to avoid the risk of them growing and causing further problems. I think that the post "Orla9298" has written has a lot of good pointers in it too. Just wanted to wish you well with whatever is decided and of course for success. Diane

Rach2585 profile image
Rach2585 in reply to DianeArnold

Thanks Diane. Not sure what you mean by 'cysts' as far as I know, I don't have any. I'm dubious about taking dhea simply because I have had alopecia arearta in the past and one of the side effects of dhea can be the loss or thinning of hair. Other than this, I am happy to try anything. I'm waiting for my gp to refer me and dhea will be something that I will ask the consultant before taking anything (due to the side effects). Thanks so much for getting back to me xx

DianeArnold profile image
DianeArnoldPartnerNurseFertility Network UK in reply to Rach2585

Hi Rach2585. So sorry I read it wrong - they are follicles! Good luck with your GP. Diane

skatty profile image
skatty

I'm so sorry to hear this. Hope you find a grt clinic for you. Just a thought as I have just had my first ultimately unsuccessful cycle - we tried to make sure we could stretch to 3 to give it a good go. Otherwise just one feels like one roll of the dice. Could you maybe chat to clinics abroad where treatment is cheaper. I know it's difficult to organise but I think they do packages which are 2 cycles for between 3 and 5000 euros eg in Czech Republic and Greece. Moving to donor if you were to be advised of that route would be very easy and cheaper there too. How ever I've heard they generally do all they can to give you your best shot with your own eggs first. Alternatively, a few uk clinics specialise in mini or mild ivf which works with your natural cycle more to just utilise a few follicles. Doing a package of three of these can work out cheaper but still prob around or over 10k. Alternatively access fertility work with a number of clinics and offer a multi cycle plan I'm considering which would be about 7k for 2 cycles but before drugs so might not be much of a saving. Women in your situation have gotten pregnant. I'm not in a similar situation but on fertility friends forum there is a low amh/high fsh dedicated thread. Hope you can find it. Otherwise message me x

Rach2585 profile image
Rach2585 in reply to skatty

Thanks for getting back to me. Some great pieces of advice and will definitely look in to some of those. A couple of people have mentioned about going abroad but it is difficult as in a teacher; I can't get time off unless it's in school holidays. Plus, people say try not to stress which is also really difficult with the job I am in xxx

skatty profile image
skatty in reply to Rach2585

Snap - except I do supply now - less stress! I know a lot of teachers time treatment for the summer hols successfully. If you go private then you should be able to do the same. Mind you, my employer for my one regular school was really great and she said two other members of staff had had time off for it. You might be surprised when it comes to it. Good luck x

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