I Have Bladder Exstrophy

Bladder Exstrophy anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Bladder Exstrophy. You're not alone. 218 People

    This Is Me ... Living With B.e. ...

     I was born in 1958 and also born with B.E. as well as all of my abdominal organs on the outside of my body.  The doc's said in Utro my body did not knit together properly in my mother's womb.  They did not operate on me until age 5, thus as you I wore diapers until then...
    justmeValerie justmeValerie
    51-55, F
    9 Responses Jul 22, 2011

    Anyone? - I am the mother of a 4 month old baby

    born with exstrophy and epispadias. Is there someone here from South Africa? I am looking to connect with families that share the same experience.
    magzee143 magzee143
    31-35, F
    4 Responses Jul 28, 2014

    The Importance of An Experienced Bladder Exstrophy Surgeon

    Our son was born in October 2004 with bladder exstrophy/epispadias complex.  We live in Albany, NY and everyone told us, "If you have a urological issue, Dr. Barry Kogan is THE person to go to."  We researched him on the internet and found him to be well...
    mskelly mskelly
    8 Responses Dec 14, 2008

    I am new here and wanted to say something.

    I am a 15 year old boy struggling with Bladder Exstrophy, but after reading everybody else's posts I realize how lucky I am. I thought my life with bladder exstrophy was tough but now I know how much worse it could be. Thank you for helping me put my own issues into perspective...
    hunterklein85 hunterklein85
    Apr 14, 2015

    I'm 18 and I'm wanting to join the military

    but I have B.E. Does anybody know a friend or a friend of a friend who has B.E and has successfully joined the military? I've wanted to join since I was about 13 but I feel like it'll stop me from pursuing my career.
    itsJonny itsJonny
    18-21, M
    1 Response Apr 23, 2015

    I am about to be seventeen in August

    and I still haven't had my surgery. Most patient's with this problem get there final operation done by the time they are ten or eleven years old, unfortunately for me that's not the case. I know that people always say "I am always here for you", or "I understand what your going...
    TruthIsTheBest TruthIsTheBest
    1 Response Jul 14, 2015

    hi everyone I recently came here by my mum

    showing me this site and im so happy that ive found people like me! I am 13yrs old almost 14yrs and I have BE. ive recently had an operation to make me have to catheterise and is there anyone here who is the same age as me ? cos I really need someone to talk to about it and I...
    randomtomX randomtomX
    16-17, M
    3 Responses Mar 12, 2014

    Bladder Exstrophy The Long Road

    Hi every one my name is Matthew iam 24 years old  and i live in Australia and i still live at home  and i was Bron with Bladder Exstrophy.   My life has been on a very long road and so have every one how has BE or you know some one wirh it. it has been hard...
    MatthewWrigley MatthewWrigley
    22-25, M
    1 Response Mar 6, 2010

    I am a 17 year old girl with B.

    E. and I have so many questions that havent been answered. I try and ask my mum questions about it but i never get answers. I get grief. I have no idea about half the things that happened to me growing up. All i can say is that i have B.E, cathetering since i was roughly 3, hasnt...
    sneekysae12 sneekysae12
    18-21, F
    2 Responses Apr 1, 2015


    Hey guys, I am twenty years old, and have BE. I keep everything so private from friends, or basically anyone other than my close family. I am ok with that I guess, but what I really need is to just talk to someone else who I could begin to relate to.. Feel free to message me...
    ilajs128 ilajs128
    22-25, F
    7 Responses Feb 20, 2010

    I have bladder exstrophy

    and I was wondering if anyone here is in the military and has b.e?
    Prophecyman Prophecyman
    22-25, M
    1 Response Feb 4, 2015

    hello this is my seventh story at E.

    P and in this i want to tell all my friends the greatest truth of my life yes i do have bladder exstrophy. i was born with this and had undergone 7 operation 2 of which failed and the others were fortunately succesful. i had the recent at Delhi A.I.I.M.S in 2009. i am supposed...
    Ahaanaa Ahaanaa
    16-17, F
    4 Responses Sep 23, 2014

    I am a wife of an amazing man born with B.

    E. He was told he couldn't have children. Are there any males out there with B.E. That were told they couldn't conceive and still did? I need some hope here because I think I may be pregnant and hopefully not crazy! My husband wants nothing more than to have a child.
    alician1230 alician1230
    26-30, F
    2 Responses Oct 5, 2015

    hi everyone I just got onto this site my mum

    showed me it and I am so happy that I've found people like me! I am 13 almost 14 and I have BE and I've recently had a operation to make me have to catheterise . is there anyone here who is the same age as me and has BE? because I really need someone to talk to about it.
    randomtomX randomtomX
    16-17, M
    3 Responses Mar 12, 2014

    Struggling To Be Happy.

    I was born in '88 I barely made it, multiple complications at birth and a dozen surgeries later I had made it to my first week. I was born with a very small penis. Although technology and medicine has gotten better, back then I guess there wasn't anything they could do. I wouldn...
    depressedBE depressedBE
    4 Responses Dec 14, 2012

    Frequent Uti

    Hi guys I'm new to this and nv knew thr was such an online support group for bladder exstrophy. I do feel comforted That that thr are other people like me cuz no one around me has this condition. I'm turning 20 n had several relationships in the past n those battling with how...
    foeshitzme foeshitzme
    18-21, F
    6 Responses Jul 15, 2012
    Gaddu55 Gaddu55
    22-25, M
    2 Responses Nov 25, 2014

    I'm a 15 boy living in the US

    and I have bladder exstrophy and I just need someone like me to talk to I'm tired of all of it and just need comfort I have bladder exstrophy and hip displasia
    thompson837 thompson837
    16-17, M
    3 Responses Aug 2, 2015

    I had about 18 surgery's

    before I was 2 and im now almost 18, Iv been teased a lot especially when I was a child but now that I have grown up a bit when I explain to people about my issues then they are more excepting. having BE causes a lot of health problems for me especially because I have a bladder...
    imrolling imrolling
    18-21, F
    4 Responses May 31, 2014

    My name is Landon and I'm 17,

    I was born with BE. I have to go in for surgery over the summer, and I'm a little scared. None of my friends fully know about my condition and won't understand what I am going through. I was hoping there is anyone here who wants to be fiends, that I can be open with, because I...
    ytaddict97 ytaddict97
    18-21, M
    3 Responses Feb 21, 2015

    Hi I'm steph 63 years old born with be many

    many surgaries.I have had a urostromy since age 6 before this I had a colostomy 15 months to 6 years when my bladder was cut off me back then no bags for baby's or kids so cotten batten covered my stoma.I have 2 grown daughters that I was told I would never have and now 2...
    Stephiea Stephiea
    Jun 11, 2015

    I've Been There....

    Hey all! I'm a 24 year old female who was born with exstrophy. I have been very very lucky with my experience with B.E. and have had a very unlikely outcome, so I am told. I am fortunate enough to be completely continent. Which I am very very thankful for. I have a huge scar...
    thankful46 thankful46
    22-25, F
    6 Responses Jan 30, 2011

    I was born with bladder exstrophy,

    I've had 11 surgeries, they broke both of my hips, and I do not have a bellybutton. I have yearly follow up procedures. I'm now 16 years old, I have accidents a lot. I constantly get bladder infections. life if a struggle and sleepovers are a nightmare. I pray every night that I...
    sydmorgan sydmorgan
    26-30, F
    1 Response Nov 11, 2014

    lately ive been wondering

    if there's something better for us. Like stem cells to grow a new bladder. I'm sick of having a stupid scar on my stomach and this stoma and cathing all the time. I really want to know if I'm doing everything I can. I'm 14 and honestly I don't want the rest of my life to be...
    Grace608 Grace608
    16-17, F
    2 Responses Jan 19, 2015

    I was born with bladder exstrophy/epispadias.

    I could only hold the urine for 30 minutes at a time so I essentially spent my youth in wet diapers. I wore diapers/depends until I was 11 years old when I underwent a continent urostomy. I catheterize every 2-4 hours. I had multiple emergency revisions as a child due to being...
    andeliher andeliher
    31-35, F
    1 Response Dec 30, 2013

    Something I Have To Deal With.

    Hello, my name is Halston. I'm 18 years old and just now starting to attend college. I haven't payed much attention to myself as in ask questions about exstrophy of the bladder. I have a stoma, and catheterize daily. This has interfered with friends, partys, sleepovers, and even...
    Halstonb Halstonb
    18-21, M
    5 Responses Aug 15, 2011

    I've been thinking alot lately on how I would

    really like to meet someone with b.e to talk to about similar things.. ( I woman with b.e. would be nice to meet cause then I could ask questions about Dr apt's with a gyno an pregnancy) anyone live in British Columbia? ??
    MsMelissaR MsMelissaR
    26-30, F
    5 Responses Jan 16, 2015

    Hey everyone i was just wanting to let you all

    know there are a lot more people out there with bladder exstrophy, if you happen to have a Facebook account add the group called "just BE"!!
    cmbaker15 cmbaker15
    26-30, F
    3 Responses May 11, 2015

    Hello, I am new to this site/app.

    I am 29 years of age, born with exstrophy of the bladder and a teratoma that was attached to my buttocks, which they believed at one point could have been the early stages of a conjoined twin (back in the 80's) I have had multiple surgeries since I was a day old and wore diapers...
    redhead029 redhead029
    31-35, F
    1 Response Jun 27, 2015

    Hello everyone, I'm a male closeted homosexual

    with BE, I don't think I'll ever find the words that would justify what's it like to be in my shoes so I'll leave at that. One thing I will share with all of you is that no matter how bad your condition is never forget that it can always be worse. Focus on what you have...
    uh13 uh13
    26-30, M
    1 Response May 9, 2014

    So I am now 21 years old

    and have had my stoma operation for over a year now. I wore pull ups till 8th grade and pads until I was 20. It never set me back in life I played every sport you could imagine. Yes depression was a part of my life sometimes very bad. I lost my best friend senior of high school...
    Orioles5722 Orioles5722
    22-25, M
    Oct 21, 2014

    Hi everyone, I'm 22 years old

    and have been living with BE my whole life just like the rest of you. I've never opened up to anyone besides my mom and close family members about my condition. I've worn pads my entire life which is hassle with sports, sleepovers, and I feel like this condition has held me back...
    kaywils kaywils
    22-25, F
    Feb 2, 2015

    I am sahil from india.

    .I have bladder exstrophy ..born in 90's..had 8 failed surgries. so now wear diaper..I have done studies in culinary field.....I also plays volleyball at libro...I am single..
    gaddu45 gaddu45
    22-25, M
    1 Response Mar 24, 2015

    A Young BE Life

    I realize I am a 13 year old girl while most users are adults I need to know that there are others like me. I self catheterize through my stoma in my bey button every 4 hours I remove the catheter every time so I can throw it away for sanitary reasons. I have questions about how...
    Grace608 Grace608
    16-17, F
    6 Responses Oct 5, 2013

    A Curse Or A Blessing? Another B.E patient.

    Hey guys and girls. i am Andrew and I am 17 years old, soon to turn 18. I was born with Bladder Exsthrophy and Epispadias complex. My childhood wasn't exactly what I'd call normal. I was bullied at school, for being the fat ugly guy who wet his pants all the time. This went on...
    VSpecII VSpecII
    18-21, M
    4 Responses Aug 7, 2011

    Hey! Is there anyone else here

    who hasn't had their last closure surgery either? How do you handle life?
    AnneliseRose AnneliseRose
    18-21, F
    May 6, 2015

    Well I have never done this before

    so bare with :) My name is Soph. 1997 I was born and diagnosed with Bladder exstrophy. For the first thirteen or so years I though that it was just a cool scar and that all the leaks, UTI's and embaressment stopped once I turned 18 or something... poof! And I'd be normal. My...
    soph210 soph210
    18-21, F
    3 Responses Nov 4, 2014

    I am the mother to an amazing boy

    who was born with B.E and Hip and Penile dysplasia. He suffers more emotionally than he does physically as he has few friends due to his condition. Too many mean children around here. Which is why I came here. I'm looking for someone who's child has a similar condition. He...
    AliceVega85 AliceVega85
    31-35, F
    2 Responses Nov 12, 2015

    Hello. I have never before shared experience

    about BE. The first time I told of this outside the family was when I was about twenty two. Little by little I try to let go of the bitterness and fear that I've collected during my youth. Never speaking of this condition openly has given me problems relating closely with other...
    sateenvarjo sateenvarjo
    31-35, M
    2 Responses Oct 26, 2014

    I Have Bladder Exstrophy

    hi,i am 24 years old,female,from Ireland and was born with BE classic! so when i was 11 i had a operation to make a new bladder out of my small bowel,health was great up to a year ago,its nothing life threating or anything,just things are starting to go down hill,but up to that...
    kel86 kel86
    22-25, F
    5 Responses Nov 9, 2009


    Hello people,I'm 26 and from Ireland and have BE. Guess we all know what its like so I'll just say if anyone wants to chat (about whatever, not just BE) or has any questions or stories they wanna share, feel free to comment or mail me.Cheers,E
    meta83 meta83
    26-30, M
    5 Responses Jan 20, 2010

    So I am 20 years old

    and have been dealing with bladder exstrophy my whole life. I've had nearly 30 surgeries and went through mini depressions but never fell to far because of my support group. For most it's a mind game. We are all as normal as everyone else.
    Orioles5722 Orioles5722
    22-25, M
    2 Responses Dec 6, 2013

    So I'm a 29 year old female with bladder

    exstrophy. I've had multiple surgeries to correct this condition, and luckily I've been continent since I was 16 with the use of catheters and a stoma. However, it seems that my body has developed peritoneal inclusion cysts around my ovaries due to the scar tissue buildup from...
    parami00 parami00
    31-35, F
    4 Responses Apr 2, 2014

    I am a 16 year old girl with BE

    and I have no who I can talk to about it. I have so many questions about BE and I'm not very confident to talk to my doctor. I havent really told many people about it due to me getting bullied because of me having it. I cant talk to my mum about it because when I ask questions...
    deleted deleted
    1 Response Sep 16, 2014

    Hi, I Am Turning 21 And I Have Bladder Exstrophy And Urostomy

    My 21st year with Bladder Exstrophy and still going I was born with Bladder Exstrophy on my birthday, after which I was named Upenyu which means 'life' in southern Africa's Shona language.I had an ileal conduit put (urostomy) and got to have a urostomy bag, to make life easier...
    Nikzor Nikzor
    26-30, F
    3 Responses Aug 11, 2011

    Im Here If You Want To Talk

    Hi my names billy, This is really the first time I talked about my condition in public. Im 23 years old and currently a merchant mariner. I've defiantly had my ups and down with this medical condition. I kind of always felt a little different from everyone else and thats why...
    billyg114 billyg114
    26-30, M
    2 Responses Sep 21, 2013

    My Daughter Was Born With Bladder Exstrophy In 2009...

    my daughter was born with B.E in 2009... she has had a failed reclosure and she is going under her second reclosing surgery come this march... we are pretty scared and worried that the same thing will happen again.... she has had tests after tests... they thought she had a lung...
    morgensen92 morgensen92
    4 Responses Feb 1, 2011

    I am a 23 year old male born with Bladder

    Exstrophy. I've had 20+ surgeries and now currently use a catheter to urinate. The catheter is a permanent thing now and I just have to live with it forever. The part that sucks is I get a urinary tract infection 3-4 times a year and kidney stones once in a blue moon. I've dealt...
    deleted deleted
    2 Responses May 29, 2015

    Long Life Of Ups And Downs

    My name is Joe and I was born with BE in January of 1954. I've been told I was one of the first to have surgery to correct this condition, actually 3 surgeries that I have no recollections of since they all took place when I was 3 years old. I feel very fortunate to have had this...
    joeynag joeynag
    56-60, M
    4 Responses Aug 11, 2012

    I am a 19 year old male living in the UK with

    Bladder Exstrophy. I am currently attending university and have decided it's time to get in touch with other people who are in the same situation as me. I have previously refused to talk to other people with my condition simply because I wasn't ready and wanted to ignore it and...
    Mason3838 Mason3838
    18-21, M
    1 Response Jul 28, 2015
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