Born without ovaries

Edited , 32 users are following.

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

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  • Edited

    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. 

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    • Posted

      Sounds very similar to me. Except they put me on birth control pills right away, not the patch. I can sympathize with the heart break. Its tough to have that finality at such a young age.

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  • Posted

    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.

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  • Posted

    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

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  • Edited

    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 😘

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    • Posted

      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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  • Posted

    i was diagnosed with not having ovaries at 16. I remember growing up watching all of my friends go threw puberty, but never going threw it myself. I knew in the back of my mind something was wrong. My mom kept waiting and hoping, but after i turned sixteen, we went to a specialist in Jackson, MS, where i was told that i didn't have ovaries . it's weird, but it never upset me.... i guess because i kinda already knew. But I'm 20 now, and it does bother me. im recently engaged and all my friends are and cousins are starting families. I want kids and my fiance does too, but i know we cant have our own. But after reading some of these and reading about ivf, i feel so hopeful!!!

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  • Posted

    HI! i did a random google search and found this conversation. I'm 35 and was diagnosed with no ovaries at 16. my mom was the one who truly noticed that i wasnt developing like I was supposed to. Doc hadnt seen anything like it and didnt really understand it. I guess I'm special???

    I've now been married over 13 years and we decided to adopt. I couldnt bring myself to do an egg donor.

    I'm reaaaaally bad at taking my hormone pills. (why would i want a period if i don't have to??) My husband is military, so my doctor is constantly changing, and I hate having to reexplain my situation every time. 😕 It doesn't seem like there are any drs familiar with this.

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    • Posted

      Kelly

      Our condition is rare but it doesn't need to be stressful for you. I have been taking prempro for 40 years with no periods. the prempro keeps your internal organs from atrophing. I am 63 and woll stay on them as long as my Dr allows me. I have gone through many drs.

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  • Posted

    Hi my name is Marisa

    Im 16 and only a week ago i found out i was born without ovaries. i never imagined this stage in my life, having to go to the doctors so often when doctors have told me i'm just a "late bloomer." so of course i have no development but everyone just thought it was cause i workout so much, being on three sports at once. My friends would make comments jokingly, never to hurt me, but now recently i feel it hit harder given my circumstance. i went ahead and told them about my diagnosis because its a big part of my life to come so its nice to have that support along the way . Honestly seeing this page helped me realize that im not alone in this even before i was diagnosed ( lol i looked everything up given i had a possibility of not having ovaries)! My real questions are

    1. will i ever have a period
    2. how will my body change during hormone therapy
    3. how should i prepare myself for the future, options if i ever want kids
    4. any drastic changes??

      thanks

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    • Posted

      will i ever have a period? No not without hormone therapy. Dr's did that for a while with me but it was more trouble than it was worth.

      how will my body change during hormone therapy? I have been taking prempro for the past 40 years. it keeps your internal organs from atroping and you stay looking younger longer.

      how should i prepare myself for the future, options if i ever want kids

      any drastic changes?? Yes your body does not produce ant eggs so you would need to have them artificially inseminated.

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    • Posted

      whats prempro? I want to take another form of pills that does not mess up my body. due to this issue my husband decided to end our marriage. Did you have any symptoms like painful intercourse, dryness, or bad BO?

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