Hemophilia affects intimacy, but patients stay quiet
Study involving Dutch men shows doctors need to ask
Hemophilia has a substantial impact on sexual function and well-being for many men with the disease, but they rarely discuss it with their doctors, a study from the Netherlands found.
“To address this gap, tools designed to provide and assess information about sexual functioning and well-being to normalize the topic and to open up discussions about it, particularly during specific life-phases, are necessary,” the researchers wrote.
The study, “A qualitative study on the impact of hemophilia on sexual functioning and well-being in Dutch men,” was published in the Journal of Patient-Reported Outcomes.
Hemophilia is a bleeding disorder that mainly affects men. It is marked by symptoms such as easy and prolonged bleeding. Living with hemophilia can affect every facet of a person’s life, including experiences around sexual intimacy. However, there hasn’t been much research into how hemophilia affects sexuality for patients, said the researchers.
“This qualitative study is among the first to explore the impact of hemophilia on sexual functioning and well-being, as well as the communication needs of [men with hemophilia],” they wrote.
Patients cite issues with dating, sexual activity
The scientists conducted interviews and focus group discussions with 14 men with hemophilia, ranging in age from 22 to 71. Three of the participants had hemophilia B, while the rest had hemophilia A.
The patients reported that hemophilia affected their love lives in ways ranging from complications when looking for partners to physical limitations while engaging in sex.
Many men said they were unsure about how best to disclose their diagnosis to new partners, though negative reactions following such discussions were rare. The men noted that, in many cases, partners need to know about hemophilia to minimize safety risks.
“When I go hiking with a partner, it is important she is aware of my hemophilia for practical reasons,” one said.
Hemophilia also caused issues during sex itself. Some patients had experienced bleeding as a result of sexual activity, including blood in ejaculate, bleeding from the head of the penis, or bleeding of the tongue due to vigorous kissing.
Reactions to bleeding during sex were mixed: The researchers noted that “most men stated they would rather enjoy sexual activity than be cautious … while some others said they became extra cautious after a bleeding had happened.”
Other hemophilia symptoms, including pain and joint problems that are common in patients who experience bleeding in joints, were also reported to cause problems during sex.
“Engaging in sexual activity in the missionary position becomes challenging when your ankle joints have limited mobility,” said one man in his 60s.
Another in the same age group said pain during sex “can be distracting, making it less fun.”
The men generally reported that hemophilia treatments, such as prophylactic (preventive) therapies to reduce the risk of bleeding, had a positive effect on their sex lives. The researchers noted, however, that none of the men reported scheduling or limiting their sexual activity based on treatments.
“I won’t restrict myself to having sex only when I’ve had sufficient treatment,” one of the men said.
Most men said their doctors had talked to them about the risk of having biological children with hemophilia, and most — especially younger men whose disease had been well controlled with modern therapies — said they weren’t concerned about having a child with the disease.
The men said that they generally did not discuss matters of sexual function or well-being with their doctors, though most agreed that these conversations are important.
The researchers called for the development of tools that can help facilitate discussions about sexual health between men with hemophilia and their doctors, such as questionnaires that can make starting delicate conversations less awkward. They also called for further studies to explore how hemophilia affects sexual function and well-being, noting a need to look at how factors like sexual orientation or religion may affect patients’ experiences.
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