Throughout Lanier’s treatment, his doctor asked him a range of questions about his diet, stress levels, and sleep habits. But there was one topic that never came up: Lanier’s sexual health. “Sex is a huge emotional and physical need,” says Lanier, the founder and chief executive of The Out Foundation, a nonprofit in Austin, Texas, that advocates on health and wellness issues for the LGBTQ+ population. “My doctor knew that I had a boyfriend … but he never once asked me, ‘Are you sexually active?’” According to the Crohn’s and Colitis Foundation, about 1.6 million people in the United States have inflammatory bowel disease (IBD), including UC and Crohn’s disease. These chronic conditions are characterized by sporadic inflammation of the gastrointestinal tract, which can trigger a range of physical and psychological problems that can significantly impair a patient’s sexual health. “I think doctors need to be more frank about [talking about IBD and sex],” says Lanier, “but at the same time, patients need to get more comfortable discussing it too.”
How Colitis and Crohn’s Affect Your Sexual Health
Approximately 35 to 58 percent of people with IBD say that their disease causes some type of sexual dysfunction, according to a study published in April 2015 in the journal Inflammatory Bowel Diseases. Some of these problems are physical: Digestive flare-ups, for example, can leave people exhausted and in pain, which renders sex almost unthinkable. But Sonia Friedman, MD, an IBD specialist at Brigham and Women’s Hospital in Boston and a professor of medicine at Harvard University, points out that psychological symptoms play a role, too. A study published in October 2017 in the Journal of Crohn’s and Colitis examined 358 patients with IBD and found that psychological factors were the strongest driving forces behind sexual dysfunction. For women with IBD, anxiety tended to limit their sexual desire; for men, the strongest deterrent was depression. What’s more, poor body image may also keep some people with IBD from initiating sex. According to a study published in February 2015 in the journal Inflammatory Bowel Diseases, more than one-half of the people with IBD who were surveyed said that their body’s appearance prevented them from participating fully in their social lives; 7 percent of them also reported some complaints with how their body looked.
Why GI Doctors and IBD Patients Don’t Talk About Sexual Health
Talking about sex is hard — but talking about sex and mood disorders can be especially tough. “Sexual dysfunction … is [sometimes] a consequence of the psychological problems that come with it,” says Dr. Keefer. “And both sex and mental health are taboo topics in this country.” This is something that Lanier experienced firsthand. “It’s a tough topic of conversation," he says, “and I used to be very reserved about it. Shame and embarrassment were big parts of that.” While it can be difficult for people to overcome their feelings of shame related to sex and their diagnosis, Dr. Friedman says that doctors can be reluctant to bring up the subject in their own right. “You ask patients what’s important to them, [the answer is] lifestyle factors like sex, and fertility, and reproduction,” Friedman says. “It’s doctors who are really uncomfortable talking about these things. Patients will gush about it if you prompt them!” She emphasizes that while physical frailties and debilitating thoughts can frustrate people’s sex lives, these problems are not inevitable. “Your sex life doesn’t have to be defined by this diagnosis,” Keefer says. Many of the IBD symptoms that preclude satisfying sex are treatable; if the side effects from your medication are causing a problem, your doctor may be able to adjust medication. If patients feel burdened by depression or anxiety, doctors can refer patients to counseling. But none of that is possible if doctors and patients don’t talk about sex. “If patients initiate this conversation, they can have a much more normal life than they might have ever thought was possible,” Friedman says. Here are a few ways to start a dialogue with your doctor:
Talk about the symptoms that interfere with your sex life. “Gastroenterologists don’t always think of sex as in their wheelhouse,” Keefer says. But doctors want to hear about any IBD symptoms that are interfering with your life — including your sex life.
Talk about sex as it relates to fertility. Most IBD diagnoses happen between ages 18 and 25, when people are at their reproductive primes. Using family planning may be indirect, but even if you have no immediate desire to have kids, the topic can spur conversation about sex frequency, satisfaction, and desire. Plus, adds Friedman, “There are a lot of misconceptions about IBD and reproduction. It’s an opportunity for clinicians to correct them.”
Why People With IBD Should Speak Up About Sex
Keefer and Friedman acknowledge how hard it is for people to start these conversations — especially since doctors should also be responsible for broaching the subject, they say. Lanier, for instance, only spoke up after his six-year relationship fell apart. (His diminished libido, which came from his UC treatments, played a role in the breakup, he says.) Even then, Lanier couldn’t bring himself to talk about sex face-to-face with his doctor. “I had to do it through email,” Lanier says. Still, he tells other people with IBD to start the conversation right away. “I know talking about sex is not something people are always comfortable with,” says Lanier. “But we have to get comfortable, because being silent serves no one.”
