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Born without ovaries

Hi! First time on any forum.

So I’m 33 and was born without ovaries! I found out when I was 16 so it’s been a very different life to most. Any fellow ladies in the same position? Stories/advice/ support welcome f

15 Replies

  • Lucy4891

    Hi I was also born with no ovaries and was diagnosed when I was 18 way back in 1984! At the time I was put on the Pill to give me enough hormones to help me develop dvd to give me a period. Later I was put on HRT for the sane reasons. The same year in was also diagnosed with Rheumatoid arthritis so I thought that there would never be any children in my life. Any way long story shortish, I got married at 23 to a wonderful man who said he was in it for love and my conditions didn't worry him. Many years later in Novemver 1993 my sister in law had a baby and I got quite depressed and asked to see a gynaecologist again (I had asked about it bit long after we were married abs told it wasn't possible) and he referred me to an IVF clinic to see about egg donation. We were lucky enough to get funding for one try and they found a donor, so on bonfire night 1994 at 08.30 am I had one single embryo implanted. Two weeks later after a blood test we got the news, we were pregnant! July 1995 my beautiful baby daughter was born. Now, I will be 52 on Friday and I have two gorgeous grand-daughters! So don't give up hope. My womb was also under sized apparently but all that happened there is she was 3 weeks early and because of the RA in had a c - section.

    There are women out there with hearts so big that will help you if you are able to carry, and of course surrogacy is also an option. Just ask and you'll be surprised what solutions are out there. My dad said that medical science would change and I'd have a baby and he was right! And it's the best thing I ever did. My daughter and my grand-daughters are my absolute world and I hope that you are as lucky as I have been. I'm always here if you want a chat. So I hope my story hag helped you a little. I know I felt like I was the only person in the world like me! So if I can offer any advice I'd be happy to answer any questions. So take care and most of all talk to your doctors and tell them what you want and fingers crossed they might have a solution. Good luck!

  • Lucy4891

    Hi Lucy,

    Yes, my daughter, 15, was diagnosed yesterday that she was born without ovaries. We still are trying to cope with the news. So, instead of being able to share any story with you, I would love to get to know more from how and how you managed to get along with the news.

    Thanks, Marion

  • Lucy4891

    I too was born without ovaries, I found out when I was about 16. I never thought I would ever have any children. However, I currently have a healthy baby girl. I did ivf with donor eggs and my baby girl is about 2 months now.  The clinic I went to is about half the cost of most clinics and they do payment plans.  I would be happy to share the info with you. They are located on the east cost and very holistic. 

    • jay75721

      I have a question: did the doctors make you take hormone pills just to make sure that your body will function normally in your life? They told me that I would have to take estrogen pills for my whole life. I need an answer so bad

  • Lucy4891

    HI! My name is Alexis. I currently reside in a little town in the heart of Wyoming. Okay. Anyways, I’m going to go into details. So, when I was in middle school, I did go through puberty. But, I wasn’t really physically developing like everyone else. So, we didn’t really think anything of it. And then came high school, I still had zero breast growth or anything. So, they took me to see a gynecologist. He suggested that I try estrogen patches, as it seemed at the time like I had no estrogen, because I wasn’t quite growing physically. To clear things up, this did not mean and still does not mean that I’m mentally disabled in any way. So, I tried the patches. And everything was going smoothly. Some developments here and there. But, I still did not have a period, so we had to go and tell him. He then raised my dose of estrogen, and still nothing after about a year. So, he then suggested that I go and get an ultrasound to see if I have any ovaries at all. Alas, I do not have any. 

    I was born without ovaries too. It breaks my heart that I can’t have a child of my own. 

  • Lucy4891

    hi lucy,

    i too have similar problem. my FSH level is too high and premature ovarian failure at the age of 20. i want to contact personally in the mail. if you want to talk to me, please give me your mail id.

  • Lucy4891

    This probably should be another thread but what symptoms has everyone experienced? I too was born without, diagnosed at 15 and am now 32. I’m aware of my options with kids but was so unaware until recently the symptoms of having low Oestrogen!

    Anyone else have weight problems? I’m not obese but find it impossible to loose weight. Even with intense diet and exercise with a PT

  • Hi to everyone who has commented on my post!

    Thank you all for your own contributions & on a personal note, it really helps knowing you’re not alone. 

    Growing up, there wasn’t the wealth of information that’s so easily accessible today & felt very alone. I got my diagnosis at 16 and was swiftly put on the contraceptive pill and sent on my way. 

    Fast forward a few years & after the pill had made me feel like a zombie I rebelled against any medication. Over the last couple of years & after a broken wrist & a serious clavicle break incl 2 ops & a metal plate I asked for a Dexa scan.

    I do indeed have severe osteoporosis & indeed feel guilty for doing this to myself. As a nurse myself, I do think I could have been more supported by the nhs after my initial diagnosis but now have the ammunition to promote my health.

    I’ve seen a menopause specialist ( the nearest specialist I could get to see who new remotely what to do with me ha!), so currently slapping on the HRT patches like a good girl.

    If I could tell my 16 year old self some home truths....  don’t panic, embrace your family-they love you, ask questions & if you don’t get a satisfying answer- ask someone else & take your hormones, if they don’t suit you there’s lots to try, but take them & most of all you aren’t alone.

    Thanks to everyone 😘

    • Lucy4891

      Lucy, Im so sorry to hear that. I'm 19 yrs old and I last year I found out that I was born without ovaries. I have a chance to fully develop my uterus tho. Doctors tell me that I have to take hormone pills becouse of my health, not for any other reason. They say that it's very important to balance the hormones in my body and I would have to take pills for life just to stay healthy. Me and my mom are against that. I took the pills (cycloproginova) for 5 months and it was HELL. okay, I started getting my period, but I gained a lot of weight, I got VERY emotional and I had some personality changes and started getting pimples all over my face. Some doctors say that hormone pills are the worst thing you can do to your body. It makes a mess in the other parts of you, because it's not natural, it's synthetic. I don't want to take pills my whole life. I would do anything if I coud treat this naturally with food and things like that. I dont want to make a mess of my body.

      So, my question is: Do I HAVE TO take these synthetic pills just to make sure that I won't get any deseases in the future? What would be best for me? What should I do? sad

      I would be very thankful if I get any kind of advice

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