I'm 31 Years Old And Have Sacral Agenesis.

I was diagnosed with sacral agenesis at a very young age. My mother knew continued to tell the doctors that something wasn't right. They kept telling her that she needed to relax and not push me in the potty-training process. Soon enough, they finally looked into it and did in fact see that my mother was right all along. My mother has been diabetic since 21 years old. Years ago I took the leap and had a "facial sling" and "ACE" procedure done for my incontinence. I was the one out of 30 surgeries that failed. As I am sure people can understand, I am reluctant to go through the awful pain and recovery time again. On another unfortunate note, I developed anorexia around the age of 13 due to my "lack of control" physically. I spent much of my time in the hospital because of my weight loss and even came close to death. I am much healthier now and no longer want this disability to hold me back in life. I am not a very confident person and hope that a successful surgery may help my problems. I've never been on a forum like this. I have many questions and am looking for some answers from people that may have had surgery for this issue. I'm looking into blocking off the urethra and putting a stint in my belly to catheterize through instead of being in the "diapers" that I have had to be in my whole life. I would appreciate any feedback. Thank you for listening to my brief story.
An Ep User An EP User
2 Responses Jan 14, 2013

it took three years for someone to listen to me, so i could understand your mother

Hi , my partner has sacral agenisis. Fortunately we are able to live full lives. and his disablility is only a small part of who he is. He has always been urinary incontinent and this does at times cause him distress. he has regular scan s on his kidneys and significant changes have been noted in the past 2 years.
He adopts a head in the sand approach , which leaves me with concerns that aren't answered. I know that catheterisation is not an option for him and he has tried medication but the side effects are unbearable.
It is great to find a site which enables me to discuss my fears with others who are in a similar situation