My Adult Life as a Female with Epispadias
By Monica
My adult life with epispadias is similar to anyone’s adult life without epispadias, with the exception being frequent bathroom breaks and inconveniences such as waking up two or three times a night.
My most memorable experience from having epispadias happened at the college medical clinic when I went for my annual Pap spear and woman’s exam. The nurse practitioner gave me my exam the first year, and all was fine, but the second year the nurse practitioner who examined me said after an uncomfortable physical exam, “I think you are missing a kidney.” After some more poking and questions, she came to the conclusion that I probably had all of my organs. Needless to say, this left me questioning if my female parts were all working properly. The nurse had said that they were, but why should I believe her? She thought I was missing a kidney!
After that experience I asked my pediatric urologist for a recommendation, and I have been pleased with gynecological appointments ever since. Even though this doctor assured me that everything was working fine and the intimate part of marriage and having children would not be an issue, it didn’t stop me from being concerned. I didn’t need to be. As I write this I am 7 months pregnant. My pregnancy has involved a lot of vomiting, but I cannot blame that on having epispadias; the blame goes to genetics—my mom suffered from vomiting during pregnancy too. However, around the fifth month of my pregnancy, my vomiting became more intense and forceful, which is where I think having epispadias comes into the picture. The force of my insides not only caused me to vomit, but it also caused me to empty my bladder. Can you imagine how I felt when I was at work and had to tell my boss that I needed to go home because I wet my pants? Luckily, I work for my uncle, and he was very understanding. Later I laughed because he has some big rolls of plastic wrap and he offered to wrap me so I didn’t get the car wet. He was just concerned and trying to be helpful, but….To combat that, I started going to the bathroom more often whether I had to go or not. And that intense vomiting and urination lasted for only about 2 months.
Currently my concern is over the birthing process. Should I have a vaginal delivery? Or should I have a cesarean section? Different doctors have given me different opinions. There are not enough statistics on women with epispadias giving birth to understand the risks. I would love to know of other women in my situation, but women with epispadias are rather rare and it’s not a subject that comes up in everyday conversations. Since I would prefer a vaginal delivery, that is what we are going to try for. Wish me luck! (The main concern is that the delivery process might ruin the bladder surgery I had when I was younger, and then I might not have any control of my bladder or….) Overall I have been blessed. Other than the small issues mentioned above, having epispadias has not affected my day-to-day life.