Considering Decision-Making and Sexuality in Menstrual Suppression of Teens and Young Adults with Intellectual Disabilities

Abstract

is a gynecologist who has been seeing Amy for the past few years to help with menstrual suppression. Amy was diagnosed with cerebral palsy at birth; she experienced some global developmental delay as a child and was in special education in school. Now 25, Amy works part-time at a local grocery store. Amy's mother currently holds her medical power of attorney, but she makes a concerted effort to include Amy in her medical care decisions, as she can express many of her wants and needs. Dr. Jones remembers that Amy is a healthy young woman overall but has struggled with heavy and painful periods since her first menses at 13. Hygiene has also been difficult for Amy; she often forgets to change her pads, which results in staining of her clothes. Continuous-use oral contraceptive pills were successful at suppressing her periods for several years; then she switched to the medroxyprogesterone shot so she would not need to take any daily medications. Last year, however, bothersome breakthrough bleeding prompted Dr. Jones to order a pelvic ultrasound, which revealed that Amy had several small uterine fibroids. Subsequently, he recommended a hormonal IUD for menstrual suppression, which was placed under anesthesia. Amy and her mother arrive for a follow-up visit six months after its placement, and Dr. Jones is eager to hear how things have been going. Dr. Jones quickly learns that Amy has been doing very well at work and has recently started dating. Her new boyfriend, David, also has cerebral palsy. Amy proudly explains that she and David have been dating for three months. Dr. Jones asks, "What do you and David like to do together?" Amy grins and says, "We like to go to the movies. Our parents go with us, but we make them sit a few rows back." Dr. Jones goes on to ask, "Amy, I wanted to see how your periods have been. Has the IUD helped?" Amy replies, "I don't have cramps anymore but I still am bleeding a small amount almost every day. I try to wear a pad but I sometimes forget and bleed on my clothes."