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't realize until much later in life how this would emotionally and physically cripple me, but I was alive.

But things didn't get better. Over the next 3-5 years I had to endure endless nights in the hospital and more surgeries. I had noticed I wasn't like the normal kids. I had a plastic bag which I had to wear strapped to my leg so I can urinate. Things were off limits to me, mostly anything athletic. My brother was great at sports and seemed to get much more praise because of it. Maybe this is something that I imagined, I honestly don't know. But I was a kid and that's the way it seemed.

I wish I could say it got better, but unfortunately it didn't. My father was in and out of jail, and my family was very poor.  My father also physically and mentally abused me as a child. More surgeries and more lost innocence as I sat in an empty hospital room awake listening to the sounds of the monitors. It's not that my mom didn't care, but she had to work and support the family so she couldn't visit often. I never resented her for it, but I got very lonely most of the times. I couldn't leave my room, and, even though I was at All Children Hospital, I couldn't participate in any of the activities with the other kids.

At around 10 or so I finally had the privilege of catheterizing myself. This was a huge moment for me as it gave me more freedom. Even though I only had a couple of friends, I loved them dearly. They were the only kids to know about my condition. Although sleepovers were always a barrage of parents asking about it, I was happy to go through it because it meant hanging with my friends.

But the very thing that allowed my freedom (catheterizing myself) was the same as the one to almost kill me. I was 14, not even old enough to drive a car, when I made my almost fatal mistake. I had forgotten to catheterize myself that day. Ideally, 5-6 times is the recommended amount. I hadn't done it once. And I paid the price. I had just gotten back from playing HORSE (Basketball game) at the local REC center and realized I had to pee. I went into the bathroom while Hey Arnold! was on the tv. Then it happened. My bladder ruptured, leaking urine and other toxins into my body. I would have died on the bathroom floor, as I couldn't move to get to a phone, if it hadn't been for my brother. He called my mom and they called 911. They brought me to the local hospital where I sat for some obtuse amount of time. I was in so much pain time didn't really seem to connect anymore. Finally they rushed me to All Children's Hospital where they preformed emergency surgery on me. I was in a coma for 5 weeks. Over the next 4 months it was a struggle to regain strength and live with tubes inside me. Finally I got to go home, only after being tortured by a student nurse as she tried to pull my stitches out (she was sorry, but it still hurt like hell)

As I went through puberty and tried my hand a relationships, I kept breaking it off with any girlfriends I had and I couldn't really understand why. That is, until I sat down and thought about it. I was afraid. I was afraid of a girl finding out about my condition and lack of a functioning penis, and it getting around school. I stopped chasing girls after that. I don't think I'll ever overcome that, mentally.

Today, I'm 24, alone and depressed most of the time. I put on a brave face for my few friends and parents because I don't want them to worry about me. But when I sit in my room alone at night, it starts to creep in my head. All the things I'll never be able to do like a normal man. The lies I've had to tell to keep my condition from coming out. It gets hard. Trying to act okay when I feel like crying most of the time. But I push on, not allowing anyone to get too close.

I'll never have a wife, a girlfriend, or a kid. This is the main source of depression, but not the only. I deal with it the best I can.

To all the parents out there that have a child with BE; be vigilant regarding your child. They might not say what their really feeling. I suggest you get them counseling, it will help them come to terms with it. Do everything you can for your kids. They'll need it more than you know.

thanks for reading.

depressedBE depressedBE
4 Responses Dec 14, 2012

Hi I'm 21 and my boyfriend who is 28 has BE this story has saddened me as my boyfriend felt like this to at your age he hurt himself and was addicted to drugs, I want to tell you so you don't go down the same road. My bf is clean now and we are getting married! I was 17 when I met him and he told me, I didn't care about his problem we learnt new ways to overcome the small problems and had fun doing it to. Your life will change and you will meet somebody who you feel confident with it is just a matter of time. If my bf had not chased me or even looked at me twice he would never have found the person who would make him feel secure in his own skin ( don't love myself obv haha).

I hope you read this and it helps

Congrats!!! My BF is 26 and has BE. So and I have dealt with the same situation. He is now clean aswell and we are getting married too next June!!! I am so excited and I know he is the one for me. I love him so much and can\'t imagine my life with anyone but him. His condition dosn\'t bother me. I can see past it and I fell in love with him for who he is not for his condition although I have accepted the fact that that is a big part of who he is and why he is the way he is. I\'m happy for you guys and wish you the best of luck!!!!

I was born with BE in 1994. I am feeling the way you are. If I am not doing something, I begin to cry. I don't want to tell anyone about my condition. I plan on meeting with a counselor soon. My only escape from life is school which isolates me from people. My parents are as supportive as they can be but I still feel alone. Thank you for sharing your story, it helps to know someone else knows how I really feel inside.

Hey there. Im Sean,27 with BE
I know how your feeling. maybe talking to the counsler is the best thing for you. keep your chin up! things will work out for you!

Hi depressed I was born with BE and i can really understand what you are saying. I made and i keep making similar thoughts about my future life and i always feel different from the others. Except from all these problems that we are every day facing i think that we have other good things to look forward to. I think that it's really good the fact that we can walk and we dont need a wheelchair or someone to help us wash ourselves etc and the fact that we are mentally healthy. In my opinion these are the most important things and if someone could help you to learn living with this problem you will finally see the bright side of life. ( i havent accept my problem too and i have depression almost two years now mainly because of that problem but i really think that we can live a normal life and be happy :) sorry about the mistakes that i will certainly have but im from Greece and i have stopped english lessons three years now. I really want to help you and i hope i ve done that :)

Hi depressed,
I know im not the one born with BE, its my husband (u replied to a post i had posted yesterday) Reading your story, is like listening to my husband talk about his passed. Wew have figured out at the councelling sessions as to why his passed relationships never worked, why 'they' broke it off with him after about 3 - 4 weeks .... this is because HE was pushing them away too, he wasa too afraid that it would have to go further, and he would have to tell them about his 'bag' and his small penis, and never being able to make love to them .... so he backed off, was kinda hirrible to them, quiet, insecurse etc etc ... so in the end, they broke it off. He has only just figured this out, after 44 years ... he feels like a freak, that he's not a man. When i came along, it was different, cos we met and got to know each other for 4 months before he told me (I had a feeling he was holding back on something, but i let him tell me in his own time) and when he did, i didnt flinch, i didnt look gob smacked, i didnt turn him away .... because by that stage, i already loved him and it didnt matter to me. That very night, we got naked together, and he stood in front of me and looked so scared, we fumbled for a bit lol, i mean i had a lot to learn, he taught me how to touch him etc.
He was 31 when we met .... you are 24, and already u are talking the way he used to. he never imagined he would have a wife, or children. But we do, we have 2 beautiful adoptive children (we did try ivf but it failed NOT because he had problems, but it was down to me as i was older than most women - i should also say i have 2 children from a previous marriage) so, he has 4 children, 3 girls and a boy .... i know he has his problems, u already know what he has done recently .... but we are working through it. I know u cant see a future right now, and neither could he when he was your age. Im not going to say everything is going to be rosey for you, but i do see a future for you, and i do hope and pray that there is a lady out there who can understand what you have been through to get where you are today. You are a smart person and you deserve to be happy, not depressed .... talk to me if you want, i am here and i will try and help you if i can :-) take care x

Thank you heartbrokenUK, it's good to hear stories like this. I gives me some hope that one day I'll find the woman I'm meant to be with.

DepressedBe you have nothing to worry about! I'm a 22 yr old girl, don't have BE and was dating a guy with BE for a few years and love him to pieces. I never thought of him differently at all and saw him for the beautiful person he was! Chin up there is someone out there for everyone! :D

My bf is 27 with BE we have been together since we were 16 and have a happy, beautiful 3 year old boy. Just want u to know happiness is out there and u can have anything u want.....don't hold yourself back as those who accept and love u will always! The rest of them just dont matter! U will find the right person and they will love u... But u have to let them!! never give up and love life coz u only have this 1 and its a beautiful world to live in x