I Have Swyer Syndrome

A Swyer Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Swyer Syndrome. You're not alone. 119 People

    I'm 34, Just Had My Gonadectomy Thingy

    Hi, I was diagnosed about 4 years ago, I sort of feel a bit robbed, I'm about to start taking hormones for the first time and i'm pretty scared about cancer's and stuff. also i'm 6ft 1 female. So hi, and like, err, hi
    AngieK77 AngieK77
    31-35, F
    8 Responses May 22, 2012

    A Bit Lonely

    Hi! I am in my 30s living with this syndrome, single and a bit lonely. My main concern is that I will never find a man who could truly accept me as I am. I struggle with how to approach the issue with my dates or boyfriends. Several times, I have tried telling dates about my...
    monimonimonimoni monimonimonimoni
    31-35, F
    8 Responses Jan 6, 2012

    It's been a year.... Hello Swyer sisters,

    It's been a year, since I've been diagnosed and it only feels like yesterday that I was Sitting in the doctors office. As a child l was the stereotyped little girl and played all the little girl games. However l remember playing differently, l wound play Mums and dads but my...
    Bethanymay Bethanymay
    18-21, F
    3 Responses Feb 25, 2014

    Embryo Donation With Swyer? More Info From Others! :)

    This is a long-ish story. When I was 21, I was diagnosed with (what I thought) was AIS at the time. It is all a bit of a blur. The doctor was unkind, not patient, seemed bothered rather than willing to help, and explained nothing to me or my mother. She (I thought) said I might...
    7 Responses Jan 26, 2013

    New Facebook Swyers Support Group

    http://www.facebook.com/home.php#!/pages/Swyer-Syndrome-Support-Group/115667438518068?sk=info or search Swyers Syndrome Support Group on FB. Please identify yourself as an Experience Project member when you join. Hope to see you there. Stephanie
    stephanie526 stephanie526
    3 Responses May 18, 2011

    Diagnosed Shortly After Birth.

    Amniocentesis predicted two healthy baby boys.  A boy and a girl were born at a Detroit hospital.  I was diagnosed a few months later with Swyer Syndrome and had a gonadectomy when I was around three or four.  I remember the doctor coming up to me in the playroom and asking me...
    epiceemilie epiceemilie
    2 Responses Mar 26, 2012

    Just Finding Myself.. Like Two Minutes Ago

    sooo .. im crying bcuz i never knew what was wrong w. me until now. this very moment of researching why i dont have any breasts or never had a menstrual cycle. i cant wait to share it w. my mom and make this doctors appt. yeah..sigh..i never went to the doctor for it. buuut i...
    tjay89 tjay89
    22-25, F
    2 Responses Mar 21, 2012

    My Story

    Not sure anyone will every see this... but after endless unsuccessful searches to find others like me, I decided to post something, just incase others are out there searching too.  My GD story began at age 14.  I had to have surgery for a bum hip, and my Mom asked the doc to...
    stephanie526 stephanie526
    11 Responses Apr 18, 2009

    Scared About The Future.

    My story is almost identical to those of all of you girls. It has been a great help to read all of your stories. The only difference is that I have not had a good time with doctors as none of them have been straight with me and told me about the syndrome. One told my mother about...
    KatieSims KatieSims
    18-21, F
    3 Responses Nov 28, 2012

    Today is exactly 2 years

    since my ovaries were removed.Feeling kinda sad...
    Nevenica Nevenica
    1 Response Jan 17, 2014

    A Light At The End Of The Tunnel!

    I was diagnosed with Swyer at 16 years old following investigations after not starting my period. Needless to say that i felt like a freak (i wasnt so bothered about periods - afterall, who wants a period!) But my completely flat chest and being told to forget my dreams of one...
    emmaryder emmaryder
    2 Responses Oct 2, 2012

    Hello Fellow Xyer's

    Wow!  To see 15 members is a very cool thing... I was diagnosed at 18 after failing to begin menstruation.  Had the ole' streak gonads removed and started HRT.  I had a pretty rough time when I found out, thinking, "oh God!!!  I've been a boy my whole life...
    Iffer Iffer
    31-35, F
    10 Responses Jun 6, 2010

    Another Swyer Has A Baby

    Dear All, I have been reading this page regularly and have posted a comment or two, but now I finally can tell my story. I will start with the fantastic news - donor egg program really works and at the beginning of this year my fantastic baby girl was born. During school...
    wewuiuihjtzloty wewuiuihjtzloty
    6 Responses Jul 22, 2011

    17 with Swyer Syndrome

    I am 17 years old and have Swyer Syndrome. I have SRY chromosome deletion, which means that I have one X chromosome and no Y chromosome( but do have part of an undentified chromosome). My 'condition' has  never been seen before as far as specialists know, and it's not Turner...
    packawaka packawaka
    22-25, F
    6 Responses Jun 30, 2009

    Sticking To It

    I've writtten this story several times, and then deleted it. The subject is an emotional one for me, and brings up alot of painful feelings. Hopefully, this is the last time I need to write this. When I was fifteen, I was checked into the local hospital to have an exploratory...
    Hope15 Hope15
    1 Response Dec 29, 2011

    So Many Questions...

    As so many other women have shared, I didn't go through puberty the same time as my other friends had. By the time I started high school I had very small breasts, and very scant pubic hair. I was extremely thin, and originally chalked the whole thing up to being so athletic. But...
    bella0486 bella0486
    22-25, F
    4 Responses Jan 27, 2012

    My Daughter Has Swyers Syndrome

    It is very prevalent in our family. My great Aunt, Aunt, second Sister, neice from oldest sister, and now my daughter has it. Apparently it is passed on the female side. the thing is, we didnt find out about it until my second sis was diagnosed at 17. it was very hush hush and...
    wsjamiel wsjamiel
    26-30, F
    7 Responses May 11, 2010

    My Swyer Syndrome Story

    Sometimes I wish I could go back to my childhood days. The days where I was just a normal little girl just like the rest. When I was the same as everybody else. When I didn't have any insecurities. I started to realise I was different from the other girls in school when I went on...
    Lgmbinpink Lgmbinpink
    26-30, F
    3 Responses Jan 2, 2013

    I Always Felt Like A Freak

    Like most of you , I have Swyer's syndrome.As I have shared in a comment in this website, ever since I was a teenager until a few weeks ago (when I found this site. which has been a blessing) I felt like a freak. I always had friends but there was something separating me from...
    nomorelonely nomorelonely
    4 Responses May 7, 2011

    My Story.

    It first started when i was 14, i went to the hospital to get a cough i had checked out. It was then that the doctor asked if i had started my period, to which i replied i hadn't. After a few ultra-sounds and and CAT scans it was told to me that my "ovaries" were useless and must...
    Strawberry2 Strawberry2
    1 Response Jan 22, 2011

    Hello everyone! I posted here a few years ago

    talking about how I had some bad experiences with my doctors so I thought I would post an update. I am very sadly no further along in my journey than I was 3 years ago. I have not had my gonads removed and have not had the breast augmentation. This has obviously been very...
    KatieSims KatieSims
    18-21, F
    2 Responses Nov 7, 2015

    Our Little Miracle Has Arrived....

    As I type this, my 3 week old son sleeps on my chest.  Little Cooper arrived 3 week early on August 10th, weighing in at 6lb12oz, and in perfect condition.  I had a normal delivery, an even breast fed for the first week.  I am so thankful for Donor Egg technology, he truly is...
    stephanie526 stephanie526
    8 Responses Aug 30, 2010

    I have swyer syndrome Sorry not know English,

    I am writing this with google translate. Swyer syndrome have my 12 year old daughter. Diagnosed with ovarian cancer when she was 10 years old and has been received chemotherapy. Are there such people who could help answer my questions? When hormone replacement therapy was...
    gadabrei gadabrei
    41-45, M
    3 Responses Jan 4, 2014

    Finally Understanding.

    Hello, I am a 20 year old.. person. I was diagnosed with Swyer Syndrome when I was Sixteen. Ever since I had the surgery I have completely tried to block the fact that I have this condition. I didn't want to start hormonal treatments and avoided talking about the subjects at all...
    completelyhopeless completelyhopeless
    2 Responses Oct 1, 2012

    My doctor suspect I have swyer syndrome.

    .. I want to know more about this syndrome.. The mental characteristic of person who have swyer syndrome is like a man or women such as how they think, what they love to do.
    kittunme87 kittunme87
    26-30, F
    1 Response Jan 26, 2014


    All I can say is What a Journey!!!! I was diagnosed with Swyer syndrome when I was born, only my endocrinologist wrote it in my charts as Turner's Syndrome-XY gonadal dysgenesis, so I thought I had Turner's syndrome. Recently I found some TS support...
    jmh84 jmh84
    22-25, F
    Jan 29, 2010


    Hello, I just started my junior year of high school. I act in school plays, and play piccolo for the marching band, and JV tennis in the spring. My life has always been busy and happy. I may not be the most popular person, but I have some friends that I can truly rely on. I had...
    EliseAmie EliseAmie
    13 Responses Dec 7, 2010

    I just got my genetic results showing XY Female,

    aka: Swyer Syndrome. I am 65 and will be scheduling my gonadectomy ASAP. If there is someone out there that can help or even let me know someone sees this....I could really use whatever information you have. Regards, Foxylady1950
    Foxylady1950 Foxylady1950
    66-70, F
    1 Response Jan 9, 2016

    Hi Everyone, I just wanted to share my story

    with everyone! My story is a lot similar to a lot of yours out there. But I just found out that I have Swyer Syndrome. It was one of the hardest things I have ever had to hear, it to me was comparable to finding out you were adopted when you were already and adult. How do you...
    kaylababy95 kaylababy95
    22-25, F
    2 Responses Jan 13, 2015

    I Thought My World Was Coming To An End.

    Just, a typical high school junior involved in dance,American Teen Cancer Society,Spanish Club and Spirit Club. I didn't really have time to think about the fact I was turning 16 and haven't started my cycle or developing. My mom decided to take me to an OB/GYN to see what was...
    SwyerGirl3 SwyerGirl3
    22-25, F
    2 Responses Jul 30, 2013

    hello swyer sisters. i was diagnosed at age of

    18. had my gonadectomy at age of 21. on cycloprogynova since diagnosed. i am now 28. trying for my baby. this is the 2nd trial of donor egg ivf. the 1st one was unsuccessful. i wondering if there any trying or having a baby through donor eggs? could share and wise me with thier...
    ibelieveingodextremly ibelieveingodextremly
    26-30, F
    2 Responses Dec 5, 2014

    Ais-dsd Support Group For Women & Families

    I highly recommend to all my Swyer Sisters to look into joining this group. Support, education, friendship....and every year we get together for a conference that includes sessions with medical professionals, and intersex advocates, and most importantly a chance to meet others...
    stephanie526 stephanie526
    Feb 10, 2013

    I'm 27 and have a pretty full on working life

    but I do art too, but when I'm on hrt I'm always lethargic and not myself. I feel stuffy and tired and not the least creative. I haven't had my prescription for a couple months now and I think I'm going back through the menopausal state again. Hot flushes and stuff like no...
    harui4 harui4
    26-30, F
    2 Responses Feb 14, 2014

    What A Journey

    Hi to all in the group.  I just found out about this group.  How amazing!  I don't have much time now, but I wanted to share my Swyer's story with you all.  My story will be featured on Mystery Diagnosis tonight on Discovery Health.  I will check out the...
    nollvis nollvis
    6 Responses Sep 20, 2010

    Trying To Make A Friend.who Understands What Im Going Through

    Hello, Im a 29 yearold with Swyer Syndrome. I grew up In Nj, When I found out about my Sywer Syndrome my life got extreamly diffacult. All I ever wanted to do was be a mother. We found out when I was 16 and didnt have my tissue removed untill I was 19. Around the same time I...
    cantfaceitalone cantfaceitalone
    2 Responses Jun 19, 2012

    Still A Lot Of Questions...

    Hi I am 18 now amd was diagnosed with Swyers at 16. Still have no Menstruation and had my ovaries taken out shortly after being diagnosed. Still sad about being different from other girls and not be able to have my own child. I am currently 5'10 and still growing. My brother and...
    walterc101 walterc101
    5 Responses Aug 4, 2012

    I Took My Sweet Time Finding Out ;-)

    Hey guys! Cool to see 4 others here! I was diagnosed at 20, after putting off seeing a doc about my lack of puberty. I'm now 23 and still haven't really begun any kind of treatment. I started estrogen at 20 but then went overseas for a year, so everything was postponed. After I...
    Natnie Natnie
    22-25, T
    5 Responses Oct 6, 2009

    All my life I felt I was different .

    Till the age of 16 I had not experienced puberty . My mother was worried took me to different doctors . Sometimes ,we had to travel nearly a day and a half to go to different specialist . They did scans and even took blood tests and gave me the contraceptive pills . And finally...
    Rubulia Rubulia
    41-45, F
    3 Responses Nov 30, 2015

    I Have Swyer Syndrome...It'S Not A Big Deal!

    Hi....yes i have Swyer Syndrome I am 20 years old and live in the UK. I initially found out that i had Swyer's when i was 15 and about to sit my GCSE exams. Initially i was experiencing pain in my abdomen and feeling like i was about to throw up. This is when i realised...
    bethanjane22 bethanjane22
    18-21, F
    5 Responses Apr 30, 2013

    Praying For A Miracle To Have A Baby

    i have been married for 12years and i found out that i have sweyers syndrome when we were trying for a baby .my husband is very supportive but we both stil hurting as his family does not want to understand.i will do anything to have a baby pls help
    lungibv lungibv
    3 Responses Feb 7, 2012

    What Would The Public Think?

    I wonder why I find it so easy to say I can't have children but can't openly say I am female with male chromozone.. I know it'd make a great conversation starter Ha!. I just wish I would not be ashamed of it. Why do I feel other people would be scared of know what this thing is...
    harui4 harui4
    26-30, F
    5 Responses Jan 16, 2013

    My Angel

    I had my little angel on June 25th, 2012. I was told I had a baby girl...I little angel only lived one hour and fifty five minutes. I knew since march that there were problems that my angel had one being the possibility of trisomy 18. I baptized my angel as a baby girl...
    momofanangel1 momofanangel1
    36-40, F
    1 Response Jul 17, 2012

    My Beautiful Daughter Does Not Talk About It

    My daughter is now 29 and tall and beautiful, a model type. She has all the swyer syndrome symptoms. When puberty did not arrive, she dropped out of school, she hated the giggling girls of her age group. When we, the parents, tried to talk with her about a diagnosis, that she had...
    uweg uweg
    66-70, M
    4 Responses Nov 28, 2012
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