The Challenges of Intimacy When You Have Cloacal Exstrophy

The Mighty Asks: How does your health condition affect your sex life?

This is a loaded question. Being born in the early ‘70s with cloacal exstrophy stacked the odds against me to survive at all. One might ask what cloacal exstrophy is. Well, it’s like you got in a fight with a blender and the blender won. All your abdominal viscera are basically scrambled and hanging on the outside. The peritoneum does not close.

This condition is known to happen on occasion with IVF babies. Why? I’m no doctor, but my guess is that you can liken it to “Horton Hears a Who.” Here’s this elephant carrying around a flower and on the flower are these tiny little creatures and he doesn’t realize it. So as he sniffs the flower, and walks around with the flower in a way that causes a change in the environment, it turns the little Who creatures’ lives upside down. So does the disruption of the environment of the womb, be it through transferring of a baby from test tube to uterus, or a high fever, or something else. The disruption and the timing of it cause just enough of a change in the baby’s environment that it wreaks havoc and turns its life upside down — or inside out in this case.

My mom caught chicken pox when she was about 2 months pregnant with me and she fevered at around 102. The change in her temperature and the virus in her system caused a disruption in my environment. It hindered the development of the GI and GU systems. How that manifested:

Omphalocele, pubis symphysis diatheses, exstrophied bladder, bicornuate uterus (though the doctors did not realize any reproductive system existed at that point), cervix communicating with the posterior aspect of the bladder), resulting in what was thought to be vaginal agenesis (The existence of the cervix wasn’t discovered until around 1996 or later; malrotated kidney, one atrophic kidney, and intestines protruding through the omphalocele. I was 9 hours old when I was taken to an operating room at RB&C Case Western and underwent my first surgery.

Fast forward to age 12. At age 12, menarche started, though no one believed me. It was thought at that point that I had no functioning reproductive system and so the blood and clots of tissue passing through my bladder which by the way, I was trying to eliminate through catheters, as I have so self-cath, was thought by the doctors to merely a bad bladder infection. The torture! There are no words! Three years of this before I was finally admitted to the hospital just a month shy of 16 years old, weighing approximately 64 pounds from the toll the inability to normally eliminate menses had on me, all while being accused of acting and attention-seeking and not practicing proper self-catheterization hygiene; none of which was true.

Needless to say, I didn’t get to enjoy the milestones of my teen years as my peers did and amazingly I survived this ordeal, and one gynecologist decided to test the theory that I was in fact having periods. Like the other doctors I encountered, she was doubtful, but she decided to put me on Depo Provera to see what would happen, and wouldn’t you know, it worked! Go figure! Three years of me, a mere child, telling my parents and doctors I was having periods, and no one believed me. I rapidly gained weight and for the first time since I was 12, I could actually stand upright.

Because of the complexity of my system, no surgeons were readily comfortable with the idea of colpoplasty much less a hysterectomy, nor were my parents, and to be honest, I wasn’t even aware these were a possibility. So, as I became a young adult, I lived hiding behind work and school as an excuse as to why I wasn’t dating anyone. I tried dating a couple of times and it was mortifying. Then by the time I was into my mid-20s, I got tired of waking up every day to a life of loneliness and tired of meeting someone, becoming close friends, falling in love with him, only to have to hide my feelings, because after all, I had nothing worth giving. My mom, in her way of protecting me I guess, always told me no one in their right mind could ever love me, and that because I was not able to have a normal sex life, it negated anything else I might be able to contribute in a relationship that involved dating, much less marriage. So, I lived in silence and in shame.

At age 24, after an attempt at dating, and having heard of a doctor in Atlanta who might be able to help, I flew to Atlanta and consulted with this doctor who was full of promises. Long story short, I got my hopes up, only to be horribly devastated and disappointed. I went on another four years of existing in this hell of loneliness and shame and then the Depo Provera shots were no longer working, and I had to be put on three times the normal dose. I ballooned out from 135 to over 200 pounds within a year and this caused complications with old surgical sites opening up and urine leaking out of my abdomen like a shooting fountain. More embarrassment! My urologist referred me to one of my pediatric surgeons and here I discovered that maybe there was some hope after all. Not only could a hysterectomy possibly be done so I wouldn’t have to be on the Depo, but there was a chance that colpoplasty could be done, and I could live a “normal life.”

Fast forward a little more. Surgery was a success! But now at 30 years of age, the doctors didn’t realize that I had no idea how to relate to my peers with this newfound life. I literally had gone from 13 to 30 in one day.

So, what does all this have to do with how my medical issues affect my sex life today? Everything. So anxious to catch up with life, and one embarrassing interaction after another, I met someone and married him when I was 34, and it was the worst mistake of my life! I was a joke to him. He withheld affection from me because I cannot have children. There’s no describing the cruelty of this! To have gone through the reconstructive surgery I endured so I would “be worthy” of being loved and have something of value to give in a marriage, my husband rejected me and wouldn’t touch me, and it was funny to him. Eight years of this, and I finally threw him out. That was in 2013. I haven’t tried to date since. I’m painfully lonely, yet can’t shake the shame, not to mention the fear of more rejection and more disappointment. And worse yet, what if, 22 years after having reconstructive surgery only to be rejected, I encounter more physical difficulties if I were to find someone?

Sometimes it isn’t so much the physical issue that affects a person’s ability to pursue sexual intimacy, it’s the shame and the stigma that the physical issues have brought. It’s the labels that have been placed on you by the very people who are supposed to love you as you are, the constant having to deny yourself the luxury of even acknowledging how you feel about someone, or expressing how you feel about them. These all affect a person’s sex life, or lack thereof. I’d like to think that maybe there is that one special guy out there, who has been handpicked just for me, who is not perfect – but perfect for me – and who would love me just as I am. But as much as I want to find that person, I’m just as afraid of the idea of taking a risk should he come around.