Posted , 42 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
4 likes, 78 replies
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charlene94396 Lucy4891
Posted
Hi lucy, my older sister and i were both born with no ovaries and underdeveloped unterus. we were put on combined pill when diagnosed at 16yrs. Im now 36 and have just been referred to a specialist menopause clinic as i had a blood test which showed low oestrogen levels. I hope you have been offered talk support as this was never offered when we were first diagnosed. my mum blamed herself and got depressed to the point of suicidal. My sister has had 2 succesful egg danation IVF rounds. i have been turned down for funding as my bf has an 18yr old. I have my own ups and downs.
toniece03453 Lucy4891
Posted
Hey, my story is similar to those ive read. when i was 16 i found out that i was born with either absent ovaries or very small ones. i would love to talk with anyone thats living with this condition.
ranada toniece03453
Posted
I have lived with it for 64 years
cleo53778 Lucy4891
Posted
Hi, this is my first time on this forum. I’d like to know if there is a name for this disorder?
toniece03453 cleo53778
Posted
i was told i have Premature ovarian failure, message me with any further questions.
ranada Lucy4891
Posted
hello,
yes there is a name but I have forgotten what it is.
I found out at 16 as well and what really stuneed me was when my Dr asked my parents if they wanted me to be male or female!!!!
silje321 Lucy4891
Edited
Hi! I have recently found out that we have a similar issue with my daugther, 16 years old. she is 1,74 metres, and has recently started with estrogens. she has a boneage at 12 years old. the doctors are worried that she will be very tall, because estrogens first promote growing, before it stops the growing, but they really don't know how tall. I wonder if anyone has any experience with this - did you grow after starting with estrogens (how much?), and did you know your boneage when you started? i appreciate very much your answers!!
ranada silje321
Posted
hello,
I was diagnosed when I was 16 from a laproscopy. I was not started on hormones until my late 20's. the Dr's tried different combinations over the years I have been on prempro for over 20 years now. I have been very happy with it. I was 5'3" when I was 16 and did not get any taller. I have never heard of a side effect of growing taller. I do not think that is part of this condition. I was get another opinion. my life from the age if 16 to my late 50' was very very difficult. a support group, counselor or therapist will help tremendously. during those years I had many counselors and none understood my condition or were able to help me with the emotional struggles. at age 57 I FINALLY found a fabulous therapist. she is an experienced knowledgeable psychologist that helped me get on the correct meds and the correct dosages. I would be more than happy to stay in touch with you and help as much as I can to smooth the way for your daughter. I am in the states, North Carolina. where are you,
marisa1576 silje321
Posted
Hi! i found out at 16 the same type of problem, i dont know my boneage but i will say ive been on estrodial for more than a year now and ive only about half an inch! Id say its a very steady growth even after i thought i stopped. For my doctors and i they dont expect me to grow any more than 5'4
hope that helps a little
-marisa
virginia10616 Lucy4891
Posted
Hello Lucy,
I am 26 now, found out i had no ovaries at 16. They wanted me on hormone pills that would help me get a period. Which made no sense cause i never got one before naturally. Doctors wanted me to take the pills for the rest of my life. I stopped taking them after 2 months of periods. I do a regular check up with my doctor, she says im healthy. So no pills for me thankfully, she does want me to take birth control tho. Which also makes no sense since I cant get pregnant. Ive got my hormones checked and they are okay, just basically in menopause early. (Thats how one doctor explained it to me at 17.)
mariya_123 Lucy4891
Posted
Developmental disorders of the female reproductive tract are problems in the reproductive organs of a baby girl. They occur while she is growing in her mother's womb.
Female reproductive organs include the vagina, ovaries, uterus, and cervix.
Causes
A baby starts to develop its reproductive organs between weeks 4 and 5 of pregnancy. This continues until the 20th week of pregnancy.
The development is a complex process. Many things can affect this process. How severe your baby's problem is depends on when the interruption occurred. In general, if the problems occur earlier in the womb, the effect will be more widespread. Problems in the development of a girl's reproductive organs may be caused by:
Broken or missing genes (genetic defect)
Use of certain drugs during pregnancy
Some babies may have a defect in their genes that prevents their body from producing an enzyme called 21-hydroxylase. The adrenal gland needs this enzyme to make hormones such as cortisol and aldosterone. This condition is called congenital adrenal hyperplasia. If a developing baby girl lacks this enzyme, she will be born with a uterus, ovaries, and fallopian tubes. However, her external genitals will look like those found on boys
toniece03453 mariya_123
Posted
Thanks for the info 😃! But this is not what these girls (based on responses) or myself have. We have functional fallopian tubes, uterus and vagina. The only thing that did not develop was our ovaries. Please read the room or at least the posts before you come and diagnose people thanks !
nishigarg Lucy4891
Posted
This condition is called congenital adrenal hyperplasia. If a developing baby girl lacks this enzyme, she will be born with a uterus, ovaries, and fallopian tubes. However, her external genitals will look like those found on boys
toniece03453 nishigarg
Posted
Again, this is not the condition me and these other girls have (based on responses). We have functional fallopian tubes, uterus and vagina. The only thing that did not develop was our ovaries. Please read the room or at least the posts before you come and diagnose people thanks !
ben25175 Lucy4891
Posted
Hi, my girl friend was born without ovaries. she is 35 years old. the one problem she has is an excessive hair loss. She takes the pill. Is this a common problem and do you have any suggestions on how to reduce this hair loss.