Sexual Health and Ulcerative Colitis: How to Talk to Your Doctor

It’s not always easy for doctors to talk about sex with their patients, or vice versa. But after Will Lanier was diagnosed with ulcerative colitis (UC) in 2005 and then colon cancer — one of UC’s potential complications — in 2015, he wished his doctor had brought up the subject. 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, a lawyer and the founder of the Out Foundation, a nonprofit in New York City 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?’”

Despite the negative effects that inflammatory bowel disease (IBD) like UC can have on a person’s sexual health, experts agree that doctors and patients don’t discuss these complications nearly enough. “IBD patients want to talk about sex with their doctors but feel they never get the chance,” says Laurie Keefer, PhD, a gastrointestinal psychologist at Mount Sinai in New York City.

Doctors need to be more frank in discussing sexual health with people with IBD, says Lanier, “but at the same time, patients need to get more comfortable discussing it, too.”

How Ulcerative Colitis Can Affect Your Sexual Health

Barriers to Discussing Sexual Health and Ulcerative Colitis

Talking about sex is often hard, but talking about sex and mood disorders can be especially tough. “Sexual dysfunction can be a consequence of the psychological problems” that come with IBD, says Dr. Keefer. “And both sex and mental health are taboo topics in this country.”

Lanier has experienced this hesitancy to discuss sexual dysfunction 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 many people with UC to discuss how the condition is affecting their sexual health, Dr. Friedman says that doctors can also be reluctant to bring up the subject.

When “you ask patients what’s important to them,” Friedman says, the answer is often “lifestyle factors like sex, fertility, and reproduction.” Sometimes, she says, “it’s doctors who are really uncomfortable talking about these things. Patients will gush about it if you prompt them.”

Keefer says that while physical challenges 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,” she says.

Many of the UC symptoms that make satisfying sex difficult are treatable, and if side effects from your medication are causing a problem, your doctor may be able to adjust your medication. If you feel burdened by depression or anxiety, your doctor can refer you to therapy if you’re not already going regularly, and a psychiatrist may be able to adjust any medication you’re taking for a mental health condition. 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 two 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 UC symptoms that are interfering with your life, including your sex life.
• Talk about sex as it relates to fertility. Most people with IBD receive a diagnosis before age 30 — a time when many of them are thinking about having children. Even if you have no immediate desire to have kids, bringing up the topic can lead to a conversation about sexual desire, frequency, and satisfaction. Plus, Friedman says, “There are a lot of misconceptions about IBD and reproduction. It’s an opportunity for clinicians to correct them.”

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Why People With Ulcerative Colitis Should Speak Up About Sex

Keefer and Friedman acknowledge how hard it is for people with UC to start a conversation about sex with their doctor, especially since doctors should also be responsible for broaching the subject, they say.

Lanier, for instance, spoke up to his doctor only after his six-year relationship fell apart. A diminished libido, which was due to his UC treatments, was one factor in the breakup. Even then, Lanier couldn’t bring himself to talk about sex face-to-face with his doctor. “I had to do it through email,” he says.

Still, Lanier advises people with IBD to start a conversation about sex with their doctor as soon as possible. “I know talking about sex is not something people are always comfortable with,” he says, “but we have to get comfortable because being silent serves no one.”

The Takeaway

• Sexual dysfunction is common in people with ulcerative colitis, especially women.
• The reasons for sexual issues may be physical or psychological, and both causes can be treated.
• Speaking about the subject with your gastroenterologist can be awkward, but it’s an important conversation that can lead to solutions that improve your quality of life.