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. 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, 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 U.S. Centers for Disease Control and Prevention (CDC), about three million adults in the United States have inflammatory bowel disease (IBD), including UC and Crohn’s disease. These chronic conditions are characterized by inflammation of the gastrointestinal tract, which can trigger a range of physical and psychological problems that can significantly impair a person’s sexual health.

Despite the negative effects that IBD 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 Hospital in New York City.

“I think 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

Approximately 35 to 58 percent of people with IBD say their disease causes some type of sexual dysfunction, according to a research review published in the journal Inflammatory Bowel Diseases. Some of these problems are physical: Disease flare-ups, for example, can leave people exhausted and in pain, which can make sex almost unthinkable. But Sonia Friedman, MD, a gastroenterologist and IBD specialist at Brigham and Women’s Hospital in Boston, says psychological factors play a role in sexual dysfunction, too.

A study published in the November 2017 Journal of Crohn’s and Colitis examined survey results from 358 people with IBD and found that psychological factors were the strongest driving forces behind sexual dysfunction — independent of disease severity. For women with IBD, anxiety tended to limit their sexual desire; for men, the strongest deterrent was depression. Social and emotional functioning helped predict sexual dysfunction in both women and men.

Another survey-based study, published in December 2022 in the journal Medicine, looked at sexual dysfunction in 120 people with IBD and 60 people without IBD. It found that sexual dysfunction was more common in people with IBD ages 18 to 30 and 51 to 60, and that it had a negative effect on overall quality of life. Older age was linked to greater sexual dysfunction in men with IBD, while anxiety, depression, and fatigue helped predict sexual dysfunction in women with IBD.

In a study of 175 men with IBD, published in January 2018 in Inflammatory Bowel Diseases, researchers found that sexual dysfunction was linked to depression, increased disease activity, or having had J-pouch surgery (removal of the colon and rectum, with a pouch created to hold waste).

A research review published in July 2022 in the journal Translational Andrology and Urology found that in people under 45 years old, IBD was linked to an 88 percent higher chance of sexual dysfunction, while there was no significant increase above age 45. Women with IBD were more likely to report problems with desire and arousal, lubrication, orgasm, and overall sexual satisfaction and quality. Men with IBD were more likely to report erectile dysfunction and lower overall sexual satisfaction.

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 ulcerative colitis 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 adds, “It’s doctors who are really uncomfortable talking about these things. Patients will gush about it if you prompt them.”

Keefer emphasizes 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 IBD symptoms that make satisfying sex difficult are treatable, and if the 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 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 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 IBD 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, at a time when many of them are thinking about having children, the Mayo Clinic notes. 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 adds, “There are a lot of misconceptions about IBD and reproduction. It’s an opportunity for clinicians to correct them.”

Why People With Ulcerative Colitis Should Speak Up About Sex

Keefer and Friedman acknowledge how hard it is for people with ulcerative colitis 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 came from 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 emphasizes. “But we have to get comfortable, because being silent serves no one.”