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Shorty86

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  • "Shorty86" started this thread

Posts: 12

Reg: Jun 24th 2013

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Monday, June 24th 2013, 11:59pm

Woman with turners. Small uterus and uterus lining question, please help!

I am a woman with turners syndrome who is awaiting referral to the assisted fertility clinic for IVF. In short, my sister is very kindly donating her eggs for the treatment. After over 6 months of tests and discussions with doctors we have finally been given the ok for referral to the assisted fertility clinic today. However, a scan that I had today revealed that my uterus was small and my uterine lining thin (4mm) I know that this is a fairly common occurrence in turners women but it has worried me. The doctor referring us didn't seem to want to answer my questions on how likely it would be that this problem can be rectified or how long it is likely to take and it may take a further 5 months before I given my assisted fertility appointment and can get my questions answered. I am also upset that we have already had over 6 months of waiting and by the looks of it are going to have much longer and yet the doctor we saw today is 'unwilling to tread on the fertility drs toes' and prescribe me oestrogen to start the process of thickening the lining which, from what I understand, can take months to years. Can anyone who has any experience of this please tell me how long I might expect it to take and is treatment likely to be successful in improving my uterus size/thickness? Am I wasting time daring to hope that this will work??? Hope I'm not being too negative, I just feel really confused and disillusioned and just want some answers, :-( thanks x

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Location: Leuchars

Children: Our beautiful angel Evie and her new baby sister Isla, our wee rainbow.

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Tuesday, June 25th 2013, 11:24am

hi Shorty86

I'm sorry you've got all this stress and worry at the moment. Unfortunately, ivf is a long, drawn out process for most of us and causes a lot of frustration as we feel the clock ticking away. I think the quickest way to go through treatment is to go privately but obviously, if you are entitled to funded treatment on the NHS, of course you're going to go with that option first, it just always takes time.

I dont know anything about Turners syndrome but i know that thickening up the lining of the uterus is all part of an ivf cycle so i'd have thought it's not really an issue if it is a bit thin at the moment because when the time comes, you'll be given hormones to thicken it up anyway. Unless of course there are specific issues related to your condition which your referring doctor simply didn't know. Unfortunately, it sounds like you will probably have to wait for your appointment with the experts to get the answers you need but there may be some very knowledgable people on here who can give you some positive feedback.

Keep visiting for support in the meantime, this is a fab site.

Wishing you lots of luck. :goodluck:

xxx

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Tuesday, June 25th 2013, 3:02pm

Hi Shorty,

It can work!! Or at least I hope so. On my latest IVF cycle I chatted to a really nice lady and turned out she was doing the same as you, a woman with turners syndrome having treatment with her sister's eggs. I don't know the outcome but she was already doing the treatment at the time so it means thickening of lining must have been succesful.

Are you a member of a support group for poeple with turners syndrome? They might be able to help too and you should be able to find online resources (sorry if silly suggestion and you have already done that ages ago). In the mean time if you want to pm (private message) me I can let you know which clinic I was at but not sure how much info they can give out. But hopefully they can tell as much if it worked and they have exprecience with turners. However as far as I am concerned you have to choose a local clinic to have treatment at and we might live miles away from each other.

Best of luck on your journey.

On a side note could you see another friendlier doctor as well about the estrogen? Is it not something women with turners might take anyway?

xx Rianon

Shorty86

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  • "Shorty86" started this thread

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Reg: Jun 24th 2013

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Tuesday, June 25th 2013, 8:25pm

Thanks for the replies. I am quite involved with the turners support society and am seeking help from them but there is a limited number of women with the condition out there who are having ivf so finding them to talk to is quite tricky. I am going to call the af clinic tomorrow that I am being referred to and discuss the issue and potential for starting treatment before our appointment because I don't think it is unreasonable to at least expect answers before 18 weeks ^^. Rianon I will pm you, thanks :) x




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