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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. 105 People

    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 6 Responses Oct 6, 2009

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    Today is exactly 2 years

    since my ovaries were removed.Feeling kinda sad...
    Nevenica Nevenica 18-21 1 Response Jan 17

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    My Story

    hi girls,well, i too hv swyers syndrome, i m a postgraduate now, i am confused whether to get married or live my life alone......but i also want to settle down with sumbody but the guilt of not telling the person d truth would make our relation break...another problem we hv to...
    fosteree fosteree 22-25 3 Responses Oct 30, 2011

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    I Have It Too.

    Please listen to my story on Youtube. If the link doesn't show up no, just go on Youtube and type "My life with Swyer Syndrome" And it should pop up. I need understanding :( And just for the record, unlike you guys, I cant have kids. Ever. Are y'all from America? Cuz I'm not :P...
    saramaria saramaria 16-17, F 2 Responses Nov 13, 2011

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    Hello! I'm Kristina, I'm 18 years old.

    In February this year I was diagnosed Swyer syndrome. Although I'm trying to get used to require me to help people who know I'm going through.I thought I was just an ordinary girl like all the others in my environment, but since I can Syndrome has become a lot insecure. Most of...
    kika96 kika96 18-21, F 3 Responses Jul 8

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    Diagnosed At 30 With Swyer's And Mixed Germ Cell Tumor

    How beautiful to see this place where we can gather and share our experiences! I am 42 years old and was diagnosed with Swyer's Syndrome at age 30 after a long time in denial then years of trying to find a competent doctor. When I was finally diagnosed, they found a large tumor...
    divamac divamac 41-45 4 Responses Mar 4, 2011

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    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 31-35 2 Responses Feb 7, 2012

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    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 41-45 11 Responses Apr 18, 2009

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    Not So Sweet 16

    Two weeks after my 16th birthday (10 years ago) I had an appointment at my pediatrician's for a sports required physical. When the pediatrician asked me if I started my period yet I said no but I told her that I was getting fat in my abdoman and had had severe pains off...
    Saswi013 Saswi013 26-30, F 2 Responses Jan 3, 2010

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    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 41-45 Feb 10, 2013

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    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 18-21, F 6 Responses Jun 30, 2009

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    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

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    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

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    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 18-21 4 Responses Aug 4, 2012

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    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 18-21, F 2 Responses Jul 30, 2013

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    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

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    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

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    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

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    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 41-45 7 Responses Aug 30, 2010

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    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

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    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

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    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 70+ 2 Responses May 7, 2011

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    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 26-30 6 Responses Jul 22, 2011

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    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 56-60 1 Response Dec 29, 2011

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    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 46-50 6 Responses Sep 20, 2010

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    Update To My Story....

    Hi all, Just wanted to post with the great news.... I am pregnant!!!!  My husband and I did a donor egg cycle in December and now I am 15 weeks pregnant and due on September 1st.   Our donor was a rock star, we transfered 2 and one took, and we have 13 frozen...
    stephanie526 stephanie526 41-45 3 Responses Mar 12, 2010

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    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 18-21 1 Response Jan 22, 2011

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    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

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    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 26-30 2 Responses Oct 2, 2012

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    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

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    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 36-40, M 3 Responses Jan 4

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    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

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    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

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    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 4 Responses Jan 16, 2013

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    Confused

    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

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    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 26-30 2 Responses Jun 19, 2012

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    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 18-21 2 Responses Mar 26, 2012

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    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 2 Responses Jan 2, 2013

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    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 41-45 3 Responses May 18, 2011

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    A Little To Late

    Six months ago right before my eightenth birthday I found out I had a stage 4 germ cell tumor the size of a basketball. Although i had been going to the doctor regularly complaining and wondering about my development they failed to realize a problem. I got a surgery removing one...
    nsm2224 nsm2224 18-21 3 Responses Nov 16, 2010

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    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 3 Responses Nov 28, 2012

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    Alone?

    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 16-17 12 Responses Dec 7, 2010

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    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 1 Response Feb 14

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    My Discovery

    I found out I had Swyer Syndrome after two years of going from a local gynocologist to finally an awsome specialist who diagnosed me. It was quite the rollercoaster of emotions! I'm 20 right now and have begun the process of dealing and accepting this syndrome. I was very...
    queenkat36 queenkat36 18-21, F 2 Responses May 30, 2010

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    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 18-21 Oct 1, 2012

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    Swyer Syndrome

    Hello to anyone who may be reading this I am in my 20’s, with swyer syndrome. I found out when I was 15. It was discovered as I fainted a lot, and went to the doctor for tests. I had all sorts of examinations, and no one could tell what was wrong with me...
    littlemissymoo littlemissymoo 22-25 2 Responses Jul 24, 2009

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    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 16-17, F 2 Responses Feb 25

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    Any Swyers Out There With Hair Loss?

    Hello, I'm 40 years old, 6' tall and was diagnosed at age 17 with XY chromosome mosaicism- I don't think my doctor knew about Swyer Syndrome, nor could I find it in any medical books at the time. It made me very unsure about exactly what my condition was, until a couple of years...
    tallgirl88 tallgirl88 36-40 Dec 10, 2012

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    Related Experiences

    I don't think I have pica syndrome or if it's just a nutrition deficiency but when I get a bath or something I sometimes have a chew on the sponge or something because I like the...
    lucymichelle lucymichelle 13-15, F 1 Response Sep 1

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    I have pica and I have done for as long as I can remember. Unlike most people who have the syndrome/disorder I have had cravings for a WIDE variety of things throughout my...
    Pandasaurusrex Pandasaurusrex 18-21 Sep 2

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    I might have to be homeschooled. My quality of life is gone as of now.
    december789 december789 16-17, F 1 hr ago

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    When I was 26 year old I found out I got Klinefelter Syndrome I get a hormone testosterone needle every 12 weeks for the rest of my life.
    blackcat055 blackcat055 41-45, M Sep 11

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