Sexual difficulties are often a taboo topic among people with hemophilia and their healthcare providers. Patients may feel awkward or embarrassed to bring it up, and doctors and other providers may not feel comfortable asking patients about that part of their lives. But a 2021 study revealed that people with hemophilia are nearly four times more likely than those who don’t have a bleeding disorder to experience sexual difficulties.
The study, published in the journal Haemophilia and conducted by a team of researchers in Canada and the US, examined data generated from the Patient Reported Outcomes, Burdens, and Experiences (PROBE) initiative, an international data collection network and a questionnaire tool created to learn more about the impact of hemophilia on patient reported outcomes.
The researchers found that the higher rate of sexual difficulties in people with hemophilia “is due at least in part to health problems and comorbidities,” says the study’s lead author, Federico Germini, MD, of the Department of Health Research Methods, Evidence and Impact at McMaster University in Hamilton, Ontario.
The survey revealed that problems with sexual intimacy in people with hemophilia were associated with older age, experiencing acute or chronic pain in the previous year, bleeds within the prior two weeks, and limited joint range of movement.
In addition, people with hemophilia who also had hepatitis B, hepatitis C, HIV, a history of stroke, high blood pressure, diabetes, arthritis or gingivitis were roughly twice as likely to report having sexual difficulties as those who didn’t have these other health issues.
Patients with certain types of muscle bleeds were also more likely to report sexual difficulties, the researchers found. In particular, bleeding in the psoas muscle, which is a large muscle that runs from the spine through the groin area and helps to flex the hip joints, was associated with greater sexual difficulties.
“We observed that PWH who reported recent psoas bleeding had more frequent sexual difficulty than those who did not,” the authors noted, adding that “iliopsoas muscle bleeding can limit sexual intercourse because this muscle functions in the thrusting movement during sexual intercourse.”
Germini says one of the take-home messages of the study for people with hemophilia is that it’s important to bring up the subject during office visits. “Discussing sexual problems with caregivers might lead to finding solutions,” he says.
The message for caregivers, Germini says, is that “healthcare providers, researchers, and policy-makers should incorporate sexual health discussion in comprehensive hemophilia care, future research, and health policy.”
In a recent National Hemophilia Foundation webinar on the topic of sexual health in people with hemophilia, Greig Blamey, PT, CHT, a physiotherapist at the Manitoba Adult Inherited Bleeding Disorders Program in Winnipeg, Canada, said, “sexual health and sexuality needs to flow from the discussion as easily as we talk to our patients about their dental health, about their orthopedic health, or about any element of their life that is something that we want to try to help them move to a greater degree or more satisfying degree.”
During the webinar, Blamey discussed his recent study on strategies for overcoming communication barriers regarding sexual issues in people with hemophilia. “What we found in Canada is that most of the healthcare providers were really uncomfortable bringing it up,” he said. “Most of them thought the patients didn’t want to discuss it, which was wrong, as we found out, because we found that the patients really want to discuss it but didn’t feel like they were allowed to bring it up.”
People with hemophilia who are having issues related to their sexual health need to know that “we’re here for you and we’re here to help you with any problems or questions you might have,” Blamey said.