I have lived with endometriosis since the age of 12, when my first menstrual cycles began. I had been told there would be “mild cramping,” but I was completely unprepared for extreme pain. Over the next several years, that pain would become crippling, preventing me from sleeping, participating in gym or even walking at times. It would hit without notice, sometimes when I wasn’t having a cycle. My mother took me to doctor after doctor, all of whom would simply perform a routine pelvic exam and tell her that the pain was in my head, imaginary and over-blown. No one looked further or even suggested that a real problem existed.
When I was 19, the pain sent me to the OBGYN department at Wilford Hall Hospital on Lackland AFB. I was active duty, and a resident doctor said he was going to recommend me for discharge because he believed I was simply goldbricking or lying to get out of duty. The head of the department decided to look further. He suggested several explanations for the pain; a laparoscopy would give the diagnosis. This is a surgical exploration of the abdomen.
As I recovered, he met me in the hallway with the diagnosis: endometriosis. I cried, filled with mixed emotions; I had the answer, I was not crazy and it was incurable. (It would also later prevent me from reenlisting during Desert Shield.)
I tried several treatments, including:
- Hypnotherapy for pain control.
- Various painkillers.
- Danazol, at a level that is now banned by the FDA. It was experimental when I took it; the side effects were nightmarish.
- Pre-sacral neurectomy. This surgery involved cutting nerves in my spine to eliminate the pain. I risked being paralyzed; stopping the pain was my only goal.
The doctor made the statement, “..We [doctors] can’t cure it, but it won’t kill you.” Over the years, I found that statement to be true to an extent. While it won’t kill physically, the effects of infertility and pain can drive women to depression, self-hatred and suicide. In families or cultures where the ability to bear a child is of supreme importance, women may experience harassment, ridicule or being ostracized.
What I’ve learned over the years is this: Being able to bear a child does not make a person human or a woman. What you do, how you do it and how you carry yourself makes you one. Here are tips to help you cope:
- See yourself as whole, not as something broken or imperfect.
- There are a plethora of children waiting for adoption if you are infertile.
- You can have a child without morning sickness, stretch marks or pregnancy.
- Research is ongoing; someday a real treatment or cure may be found.
- Never give up hope.
- A real man won’t care about your ability to have children, he’ll love you for you.
This isn’t a condition to merely survive; it’s manageable and you can choose to live a long, healthy life. I served in the Air Force, was a Paramedic and Firefighter, and am now living as a freelance writer traveling the country. I am also an accomplished equestrian. I don’t let it stop me from doing anything, and neither should you.