Born Without Ovaries - Ivf And Donor Egg My Only Option.....

When I was around 17, and hadn’t started puberty my parents & doctor decided to investigate - after many months of numerous blood tests (so many I got used to the light-headed feeling), they decided that I had a slight form of Turners syndrome (more on this in a bit), which means that right at the moment of conception, one of my x chromosomes got damaged, and the piece that was lost was the bit that should’ve told my body to grow ovaries - I was born without, and although my tubes and uterus/womb are 100% normal, I would have to be on HRT for the rest of my life and would need a donor egg and IVF to have a child. At the age of 17, this was still devastating, as I had always just thought I would automatically be a mom one day.  Over the years I did further research and in general the medical profession have been good to me, but this is something I have always had to deal with in my own way.  As I moved past my mid 20's, time seemed to be running out, but I hadn’t met the right man, nor did I have the money for IVF, so I coped with it day to day.

Fast forward to my mid 30's - I have now met the man I want to have kids with, and who will be such a good father, and whose clock is ticking as much as mine is.  We don’t have the money, but could get it.  Living in our area of London, we are on the waiting list and will be able to get 1 cycle of IVF for free on the NHS.  Unfortunately the wait for a donor egg could be forever unless we find someone - which would mean friends or family, or advertising....which in reality is probably not going to happen.  We are both from South Africa - have both been in the UK for 10 and 11 years, together for just over 2 years - so have investigated our options there, so will need at least £5k per cycle - so as you can understand the financial commitment is quite a bit.

We have some wonderful friends who want to help, but she is over the age limit (and had premature twin girls, so wouldn’t put her through any risk).  Most of our friends have kids, as we're at that age group, and most have varying knowledge of my situation - we enjoy time with them and their children.  Some days are more difficult emotionally, and I decide whether I can handle it or not. Some I don’t go to, some I go, and then deal with the emotional fallout afterwards.

What is Turners syndrome - well as I mentioned its where there are no ovaries at all, or some streaks of tissues (in my case), so there is no natural hormones, so HRT is needed permanently.  There are other health issues normally, some heart problems, some ear and eye issues, but sometimes there are also physical characteristics which I am lucky enough not to have - Turner syndrome girls are usually shorter than 5ft, and some have webbing between fingers and toes, and some webbing between neck and shoulders.  So as I said in my case I have been extremely lucky.

Each day is a struggle - I joined EP in the hopes of meeting others like me, kind of like an online support community as the infertility is really starting to affect me - not sure if it’s because I’m turning 36 this year, and don’t feel like I’m any closer to at least starting my IVF journey let alone getting to achieve my dream.  I hope that in turn I can help someone else to understand. 
sascorpio sascorpio
41-45, F
18 Responses Aug 7, 2010

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I was also born with turners, diagnosed at 14, very similar to you it's a 'mild' case

I'm currently looking into IVF with my boyfriend and would love to hear your experience with IVF and having turners as I'm not sure how the process will work for me

Thank you so much for the information. I was born with the same condition and I am still going thru the testing stages. But I hope soon that I will get some more information soon, and I will be glad to share it with you! Hope you are doing well although I know this is a hard thing to live with! I will keep you in my prayers!

Hi there, I'm thirteen and im experiencing symptoms that would relate to me having this case where I'm born without ovaries just like you. Monthly i deal with pain and cramps but nothing is coming out... I think it's supposed to though. Also I have a lump in my stomach or a "flab" and Ive researched and a website said it could be because of blood clot or something. I'm not to educated with being born without ovaries, but then again Im not sure if I even have this problem. My parents have no clue about this unfortunately and in to frightened to admit it to them, as I am scared they will be disappointed to not be having Grandchildren. Is this a serious problem? Should I admit to them that im having these symptoms? or should I wait until they worry that I haven't had my period yet? They keep saying it will be any day now but I highly doubt that. today at school I felt the cramps deeply and my sister and my mother are on there periods and families periods tend to fall on the same days, but nothing came out... I hope and prey im not gonna have to deal with this for the rest of my life:( I wish I could be like all the other girls :/

Hi, I just read your story and I have a very similar one. I was 17 too when I hadn't started my period yet, well, nearly. It was my 17th birthday the GP told me I hadn't got ovaries, and would clearly not be able to have children. I was devastated and couldn't talk to anybody bc my Mother was even more upset than me, my friends didn't really understand, and I had A-levels and getting into uni to worry about. Now I feel a lot better about it, but sometimes it still really upsets me, and I worry that I won't find somebody that will stick with me bc of the whole children thing...reading your post makes me feel less alone, thank you, and I really hope you get to start your IVF.

Hi there i read your story and was touched! i too have turners syndrome i was fortunate to have found out at 14 since likewise things that should have naturally been coming just weren't...I'm now 26 well soon anyway and have wanted children since i could remember, as of right now I'm not married but i know its something i want i have resigned myself to adoption and reason at least that way children that aren't being loved can be. i remember reading somewhere a lady wrote about her sister and some friends having turners and the fact that they were (none of them) not married and ever since then have worried that i would never be married i see now that's just my own concept based off of her observation and have hope that one day i will be... thanks for your story

Hi, i was amazed to read your story because i too was born without ovaries. i recently at the age of 21 just found out and i too will have permanently take estrogen and all of that. I at the age of 17 realized i was not like other females i went to the doctors and i never got any answers until now. I still don't honestly know how to feel. In my situation i actually to have a donor for the eggs. I think about my future and how much will cost just to expand the family and it really discourages me but i'm glad to know there are other women like me.

I'm almost 30 I've been trying for a while now I don't think I can have children infact I know I can't thinking about going to see the doctor depresses me because I know what he will say.... I just needed to wrote this down just to make myself feel better crying doesn't help

I am 17 years old and was have not seen my period as yet therefore, I went to the doctor and was informed of the same devastating news that I have no ovaries. It makes me so very emotional because all my life I planned on having lots of children and to find out I can't really hurts..

I would just like to say I am 23yrs of age and am also in the exact same position. I was also diagnosed at the ages of 17. I'm in the process of research as my doctor told me it is impossible and I will NEVER be able to conceive or have a child of my own which is heart breaking, however this is how I came a crossed your story which touched me and brought me to tears. Thank you for sharing your story

last august i discovered that i too was born with no ovaries. i had never had my period and my body hadnt fully developed. the doctor didnt really explain it to me properly. all i know is that my chromosomes are fine but i will never hav children naturally (Thank God for IVF). i hav been on HRT since then and its great but sometimes i feel like im not a proper woman. if i never had the correct levels of the hormones which trigger puberty in normal teens does that mean i never hit puberty?ii also sometimes worry about my body developing at my age (18). most girls my age are fully developed women whereas i still look like im 14. im too afraid to go out with boys because then theyll discover that i dont look like i should, yet. all of those miniscule problems(compared to some other people) aside, i am so delighted iv found others who suffer from the same condition. its wonderful not to feel alone in my experiences so thank you everyone! my support and love goes out to all of you. thanks x

Hi just wanted to say that it was nice to read your story and know that there was someone else out there going through the same as me. After lots of test i was diagnosed when I was 17 and now 31. Like you I was devastated when i found out and to be honest i still struggle to deal with it even now especially when friends and family members are having children. I am very luck to have meet a very loving man who understands and still wants to be with me even though there is a chance he will never be a dad. We are not in the position to go through private IVF purley because we cant afford it. But we are currently on the NHS waiting list. We have been told to expect at least a 2 year waiting list. I am very lucky to have 4 sisters who have all offered to donate there eggs to us but unfortunately due to other circumstances none if them would be suitable according to the specialist. Thanks for listening x

i am 22 stll not experiencing period .but stil i am satisfied with ALLAH wish .HE knw what is better for us.i dnt have breast.but by the blessing of ALLAH i find a person who is my fiance now. he love me alot and he know everything about me .he is normal .so just hope for the best

I have the same thing, I found out when I was 16 now I am on the pill as hormone replacement (i am 18). In a way I am quite lucky because i decided I wanted to adopt kids when I was 13, so before I knew (though subconciously that may have been why) .. I figure that it's not fair that I can't have kids but it's also not fair that some kids can't have parents so I will give some of them a home some day :-) That doesn't make me ok with the diagnosis... I'm just saying, especially to icare4u000 as you are so young too, it is another way to look at it. I also can't contact you because of your age but feel free to contact me. I know it's a rough time, and how scary it is especially when you might be thinking about things like relationships. etc, but it will all be ok :)<br />
And sascorpio I wish you all the best with your IVF treatment, though I'm sorry to hear your relationship has ended. thank you for posting. It's so easy to feel like you are the only one going through something, and when I first started researching this there still wasn't much online about it. it's reassuring to know there are others x

icare4u000 - Im sorry to hear that you are going through this difficult patch at the moment, please feel free to email me directly to ask any questions. Unfortunately because of your age, EP blocks me from seeing your profile and from contacting you myself.

I was recently just diagnosed with being born without ovaries. I am 16 years old and never had a period. I need to go for many more tests, to truly find out what is going on. I'm scared. Any details on your condition ? Can you help me understand this better. In the future, my dream is to become a mother one day. and this is just a blow to my heart. im depressed, angry, and everything? Anyone have any ideas?!?!

my heart goes out to u. i had the same experience last year and i completely understand how u feel. scared and...differnt to everyone else. i always thought that i would be the perfect mother which is why i found it so hard to understand how this could possibly happen to me? i dont think iv fully come to terms with the situation yet and i dont really hav any wonderful advice or information to give u (though my doctor suggested that i go to a counsellor who deals especially with peopl with fertility problems) all i can say is that it gets better. your feelings will stop being so raw and youll stop thinking about it every day. Just concentrate on the good things about yourself and in your life and it will ease over time. i know this probably isnt much help to u right now and ur probably wanting me to shut up so i will..:P stay positive:) xx

Thanks for the comment jrabbit - unfortunately the relationship has ended due to many reasons, some of which are the pressure of my situation.

I'm so sorry, such hard issues to go thru. I hope you can find a donor and everything else you need in a timely and cost affective mannor.