# Hello, I'm new...suffering from primary amenorrhoea.



## noperiods (Mar 14, 2009)

Hello Everyone,

I'm really glad I faced my fears and started properly investigating the world of infertility. I am 23 and desperate for a family but I never started my periods. I got to the age of 18 before being taken in by Prof Anderson at Edinburgh Royal Infirmary, who tells me that I don't produce enough hormones to make my ovaries work. Everything is fully formed, inside and out but my brain still thinks I am a child and nobody knows why. I am on Microgynon for an artificial cycle since I have already developed quite severe Osteoporosis.

Has anyone else got this? Has anyone else even heard of it? The older I get, the more this affects me with all my friends and older siblings settling down with children. I do not want to be the token Aunt spinster, and some days I cannot even look at babies without crying.

I'm so glad to have found you all.

Laura  Cry


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## towny22 (Feb 13, 2009)

Hello and Welcome im 37 carnt say have say as you
Had This temporaily due to over exercise and to low fat diet i was told.
now quite the oposite.
sure you will get lots response on here im fairly new ,sorry to hear of your conditon afraid havnt any knowledge of it.

Lots ot read on here finding way round here still lv Towny22


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## Bambam (Feb 14, 2008)

Hello Laura and welcome to Fertility Friends 

This infertility lark is so tough and we all have days when we just can't hold back the tears when we see pg ladies and babies  We all know how much it hurts and are all here to support and help you through your journey  I'm sorry but i personally don't know anything about amenorrhoea but if you use the search function in the menu you should find some information.

Here are some links you might find helpful at the moment. Please do have a look around and explore and start posting around the boards and making friends. FF is a wonderfully supportive community and you can only get the best out of it if you start posting and joining in so, please do so.

*What Every New Member Needs To Know (includes a list of common abbreviations) ~ *   CLICK HERE

*POF / Early Menopause ~ * CLICK HERE (I know this isn't primary amenorrhoea but may be of some help)

*Peer Support (for asking fertility and treatment related questions of your fellow FFers) ~ * CLICK HERE

*Questions for your first cycle consultation ~ (use the ones that apply) *CLICK HERE

You can have a bit of fun or just gossip while you are on FF too so check out the general chit chat / jokes / hobbies area:

*Girl & Boy talk - Community & Fun Board ~ *CLICK HERE

You can also chat live in our excellent chat room. We have a 4 newbie chat sessions in the chat room every week on (*Wednesday*), where you can meet other new members and get technical support with navigating the site and using all the functions available here.  CLICK HERE FOR INFO ON NEWBIE CHAT 

You can also "meet" and chat with people in your local area through the *Location boards*. This is especially useful to find people who may be using the same clinic and or in the same PCT area.

Wishing you lots of   

Amanda xx


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## noperiods (Mar 14, 2009)

Thank you both for your replies! I will definately check out those links. Coming on here has made me realise that maybe I should push for a more specific underlying problem as unfortunately the doctors know very little. Theres plenty of reasons why amenorrhoea happens, but not when its primary too! 

I'll be sticking around, thank you again.
Laura   xx


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## Bambam (Feb 14, 2008)

Hi Laura

Yes do definitely push for some answers from the doctors, often they do need some encouragement from us to get things sorted 

As I say I have no personal experience but i do have friends that never ovulated naturally and after being given medication to make them ovulate they have become pg and had their families.

There are also options of egg sharing and having donor eggs if you find in the future that you do need to look at these options and there are links on here for more info

*Egg Share ~ *CLICK HERE

*Donor sperm/eggs ~ *CLICK HERE

Let us know how you get on with the doctors as we're all here to help and support you as much as we can 

Amanda xx


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## noperiods (Mar 14, 2009)

Thank you so much!   xx


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## Natalie01 (Jun 10, 2007)

Hi,
I can share a lot of what you are going through.  I was 16yrs old when I was told that I have non functioning ovaries (I have a condition called Turners Syndrome).  I too have been put on meds to create a cycle.  The first traumatic exeperience was being a young teenager and having to watch all the other girls changing and developing and wandering why my body wasn't doing the same and being soooo much smaller than everybody else (this is something that still affects me today, I'm only 144cm tall).  Finally, I had answers for my primary amenorrhoea.
Yes, it can have an affect on a relationship but at least we can go into a relationship knowing the facts, just be open and honest with any partner.  I struggle sometimes with my idea of femininity, and that I lack such an important part of what should make me female.
Just to reassure you that I have found somebody special and that we have now been married for almost 8yrs!!!

Natalie xx


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## Kylie Minogue (Jun 10, 2008)

Hello Laura,

I read your post and remembered a piece I'd heard on yesterday's Woman's Hour on BBC Radio 4 about a hormone called Kisspeptin which triggers puberty.

Here is the blurb from the Woman's Hour website:

Hormone offers hope for women with infertility.

New research into the hormone kisspeptin, which triggers puberty, shows it has the potential to help infertile women whose periods have stopped due to a hormone imbalance. Trials on fertile and infertile women by scientists at Imperial College London, revealed that injections of kisspeptin raised levels of the hormones crucial for ovulation. The research has been led by Dr Waljit Dhillo, a consultant and senior lecturer in endocrinology. He joins Jane to talk through his findings.

You can listen to this item by clicking this link:
http://www.bbc.co.uk/radio4/womanshour/04/2009_11_tue.shtml

I hope this helps.

Best wishes

Kylie Minogue

/links


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## still smiling (Jan 15, 2009)

Hi Laura,

I have'nt got any medical advice other than to say i've heard of it.There are also similar issues for men who never develop enough to produce sperm etc.I'm sorry there does'nt seem to be anyone with first hand experience but just because its a less common cause of infertility it does'nt mean people on here won't relate to how you're feeling.
There are so many reasons why we all can't get pregnant[easily!] but it all amounts to the same thing.The means by which you will hopefully one day have your baby might be exactly the same as a women with entirely different issues.
I hope you will soon feel like 'one of the bunch' 

The suggestion that you should ask lots of questions and make sure you get answers is perfect.Don't let anyone palm you off with unsatisfactory answers.

One last thing and i hope its ok for me to say[shout at me if not ]......If you are ok with using 'laura' why not think about changing your user name to that.If you had'nt have signed your name at the end of your first post i'd have been a bit stuck because i don't like the idea of calling you 'noperiods'.I would have felt......well.....a bit cruel.
This might be the only place in the world where you can feel normal.You deserve to not be referred to by your problem,it is'nt who you are.I know i'm being nosey and i'll get back under my rock but i felt sad that you thought that would be a good name for you...........
I LIKE LAURA!!!!!!!!!!!!   

You'll be fine hun.I'll look out for you xxxxxxx


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## still smiling (Jan 15, 2009)

Me again....just noticed you've had 2 replies from people with a bit more[ok a lot ]more info that me........just goes to show you are'nt alone


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## noperiods (Mar 14, 2009)

Hi!! Thank you to you all for posting! I feel so welcomed   and theres so much that I'm learning already. I'll definately take a look at that link for the hormone injections etc, thank you so much. 

The idea of 'struggling with femininity' is SOO true for me! I've unfortunately had to start sex therapy with my partner due to this and lack of sex drive (which is quite strongly linked to primary amenorrhoea anyway apparently  ). I totally understand about feeling like less of a woman, not because of fertility as such, but just that something so important is missing! 

Thank you again and good luck to all you ladies with your own journeys! 

LAURA! Yey! (I'm just gonna go figure out how to change it...)   xx


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## still smiling (Jan 15, 2009)

Hi hun,

So relieved you don't think i'm a bossy boots but this is the road to self discovery is'nt it hun so a name like that just won't cut it!! 

The responses you've had are brilliant and i'm glad you feel like you're getting somewhere.
Also,if it helps to know..lack of sex drive is probably something we can all relate to at some time or another.It can be hormonal,circumstantial or a side effect of even everyday drugs.The thing to remember is the brain is the main sex organ and so it can be 'trained' to be responsive.Don't get yourself into the train of thought that every other women out there is gagging for it[!],it simply is'nt the case.You will develop your own sex life over time which is what every couple does.
From what i gather your body is capable of sex?what may be the issue is your perceptions of how sex should be,how everyone else feels about it.
At 23 you are a women and your body's failure to catch up does'nt detract from that.Your partner certainly won't consider you a child,no-one else will so perhaps you need to work on your own self perceptions.You might find that it takes some time but you'll get there.

To change your name click on your own name which will bring up your profile and then click on 'change profile',that should do it 

Lots of luck for your fertility journey[you'll find a way] and your personal journey


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