Born without ovaries

I've spent so much time thinking I was alone with this. Im 21 years old and was told 8 days before my 18th that I had no ovaries, they've no idea why but I'd never be able to have my own children. I started HRT patches. Its been a crazy few years my oestrogen levels were so low I was diagnosed with severe osteoporosis in my spine and hips where a sneeze could lead to a fracture and so now on 2 patches Evra and Evorel 75. Some days I get myself so worked up and just think why me!! Its effected every part of my life and I'm sick of explaining it to consultants and drs who question why im on these patches. Its been great to find others in a same position (happy tears) and hear that it does get better and that people have managed to have kids with egg donation. Would be great to hear some more and get some more information about the journey for egg donation (Im in UK). Thanks All!!!

Hello my first time on a forum. I was born with no ovaries. At that time doctor didn't know and x-rays and such were not as accurate as today. was put on hormones at about 16 to get a period and he said they help your bones and heart. was on fertility pills and my hormones for almost 7 years. went to a specialist and had exploratory surgery and found no ovaries or eggs. I have a chromosome disorder. A deleted arm on the X chromosome. I was devastated. started having anxiety and panic attacks. Didn't think we could afford other fertility treatments. So I just cried when anybody got pregnant. Hubby was great though. We adopted our baby boy at 2 months old. we were 35. He is now 31 and is the joy of my life and just engaged and bought his first house. I tried to look up if this syndrome has a name. Does anyone know? Thanks so much.

Hi Lucy! I can't tell you how happy I am to have come across this!

I'm 56 and I, too, was born without ovaries!

Everything else is there, so I was able to get pregnant through GIFT, gamete interfallopian transfer using donor eggs.

I think we have A LOT to talk about because as hard as I have tried in the past, I have NEVER found anyone else with the same situation.

I want to tell you more, to talk to you, to get to know you!

I'm here for you, too!

Unfortunately, getting my hormones right has never been too easy for me. They told me to stop taking hormones when I was 40 because I wouldn't be having any more children. This was a huge mistake and I'm still paying for it. I'll explain more later. I just wanted to reach out as fast as possible. You can learn from things they didn't do right so you will have fewer problems.

I'm SO excited to meet you!

Lauren

I have been trying to connect with other people born without ovaries for years with little success. I was excited that a Google search brought me here.

My story is similar to many of yours. The whole "late bloomer" line from my doctor, the ultrasound, taking estradiol, taking birth control, looking younger than I am etc.

I was also born with hypothyroidism and diagnosed with ulcerative colitis when I was 27. I'm wondering if anyone else here has either of those. I wonder if it is connected to the ovarian agenesis.

I always get the most surprised looks when I tell others I was born without ovaries. Every time I get my routine colonoscopy for the UC the pre-op nurse always remembers me because of the whole no ovaries thing. I've shocked many doctors and a lot of them don't believe me.

So hi to you my fellow ovary lacking people. It feels good to find others like me because I've never met anyone with this at all.

I was born without ovaries, discovered at 16 due to Amennorhea (1996 I believe). No genetic abnormalities were found. I was put on a plethora of bioidenticals, pills, creams, at one point the highest dose birth control pill. Eventually found a bc pill that didn't make me insane and also use Premerin cream vaginally. I just turned 40 and I'm wondering where this road will lead hormonally. Overactive bladder, hot flashes, night sweats all abound when I miss any doses so I can only imagine what lies ahead. I've never really wanted children so I never tried IVF.

my 15 year old daughter doesnt have any ovaries and a very small uterus. I need help how do i help her? she is going to be told tomm at her appt.

Hi! I've actually been to this forum when I was first diagnosed at 18. It was definitely difficult to cope with the fact that I was born with no ovaries, but now that I'm 21, I feel that I have started to accept my condition.

Pretty similar story with everyone else. I didn't really have any breast growth, and my period never came. When I first visited the doctor, they told me that my uterus was abnormally small for my age and they couldn't find my ovaries. After months of doctor visits, I was finally diagnosed with XX Gonadal Dysgenesis (and I only found out the name of my condition literary earlier this year).

Hey Lucy,

I know this was posted about 5 years ago, but I finally feel like I am in a place to where I can share my story. I was 15 when I was diagnosed after sharing my concerns over not having my period with my doctor. They ran blood tests and my FSH and other reproductive hormones were exponentially higher than they should be. I was sent to a gynecologist who then referred me to a reproductive endocardnologist for further testing. After genome testing came back that my chromosomes were both XX and an MRI and ultrasounds showed no presence of ovaries, my doctor concluded that I was born without ovaries. We tried to look for potential causes but were not able to find any. So I guess it was just a fluke in my development. I am turning 20 next month and while I still do get emotional when I think about how my future family has changed and how I see stretch marks all over from the birth control effects (My doctor tried to take it as slow as she could with the hormone therapy, but it still caused some marks), I have finally found peace in my diagnoses. I found this forum about 2 years into my journey when I found the courage to begin researching. I have a uterus and vagina, but no ovaries and to be honest, this was the ONLY source that I could find that even talked about a women born WITH a uterus and no ovaries. Honestly this was tough when I began researching, thinking that nobody understood how I felt and not finding any medical articles explaining statistics on the disease or facts about it. When I eventually found this forum 2 years into my journey, I found such comfort in knowing that other women knew how I was feeling and felt they could share their stories. I have been so scared for so long to share with others my diagnoses but have slowly been opening up to those closest to me. I have asked my doctor and nobody has been able to provide me with a name for the condition, which was a hard pill to swallow because I honestly think that it would help me cope if they could just provide me with a name. Now, 5 years into my journey, I no longer cry every time I think about how different I am than the friends around me, or how the reality of my future family has changed. I am proud that I am different. I don't know if anyone will ever see this because it seems like nobody has posted here in a few years, but I just want to thank everyone for sharing your stories, it truly helped me cope with my diagnoses and provided me with more comfort than I can put into words. To any newcomers, any women who have questions about the diagnoses or coping, please feel free to comment or message me, I would absolutely love to help.