2 in 3 Sjögren’s patients experience sexual challenges: Study
Vaginal dryness, erectile dysfunction are concerns, as are self-image, insecurity
About 2 in 3 women and men with Sjögren’s disease experience challenges in their sexual lives that go beyond physical symptoms, such as vaginal dryness or difficulty getting and keeping an erection, and these may include stress, social taboos, and poor body image, a study finds.
Physical and emotional challenges “interact with each other and together shape the sexual experience,” wrote researchers in the Netherlands, who noted that “future research should focus on the patient as a whole person, and not solely on physical sexual functions.”
The study, “Sexual experience and functioning in male and female patients with Sjögren’s disease: a qualitative study,” was published in RMD Open.
Sjögren’s is an autoimmune disease wherein the immune system mistakenly launches an attack against moisture-producing glands, such as those that produce tears and saliva. The most common symptom is unusual dryness in the eyes and mouth. But the disease can cause fatigue and other symptoms that interfere with daily activities, including sexual relations. In women, vaginal dryness can make sexual intercourse painful, while erectile dysfunction is a common complaint among men.
However, the problem “has received limited attention in both research and clinical practice,” wrote the researchers, who interviewed 11 women and nine men, ages 24-65, to learn how Sjögren’s impacted their sexual lives. Seven (63.6%) of the women scored less than 26.55 points on the Female Sexual Function Index (FSFI) questionnaire, indicating sexual dysfunction, which can be defined as having difficulty during any stage of normal sexual activities. Two-thirds (66.7%) of the men scored less than 25 points in the erectile function domain of the International Index of Erectile Function (IIEF), indicating sexual dysfunction, in this case, difficulty getting and keeping an erection.
Sexual challenges with Sjögren’s disease
During the interviews, which lasted an average of 1.5 hours, both women and men mentioned symptoms of Sjögren’s, stress, the fact that their disease isn’t visible, how they see and cope with their disease, the quality of their sexual relationships, and social taboos as factors that affect their sexual functioning.
Women experienced vaginal dryness and pain during sex, while men experienced erectile dysfunction. Even with treatments such as lubricants, these symptoms made some patients develop a poor body image and feel insecure.
Many faced trauma or long-term stress before their diagnosis of Sjögren’s, including divorce, abuse, or losing loved ones. Some shared these experiences openly, while others revealed them later. Many believed stress triggered their disease, making coping more difficult.
They said symptoms like fatigue and pain caused discomfort and made physical intimacy difficult. Dry mouth made kissing painful and talking difficult, which affected being able to develop emotional bonds. The severity of symptoms also affected sexual satisfaction, leading some to focus on nonsexual intimacy instead.
Because Sjögren’s is an “invisible” disease, many patients felt misunderstood and alone, and didn’t share details at work or with loved ones. Those who stayed silent felt pressured “to live their life as ‘normal’ as possible,” while those who spoke up felt unheard.
How the participants viewed their disease affected how they coped with sexual challenges. Some ignored their symptoms, while others used lubricants or adapted their sexual practices. Those who accepted their diagnosis coped better and felt more satisfied with their sex lives. Women were generally more open to finding solutions than men.
Most patients found it difficult to talk about sexuality due to social taboos, especially those who had little emotional support growing up. Many felt alone and avoided discussing their challenges with doctors, fearing it was inappropriate. A lack of awareness among healthcare providers only made this worse.
“Even within strong and stable friendships, participants reported hesitance in addressing issues concerning their sexual problems and doubts because they considered this to be a too personal subject to discuss and/or they experienced shame and insecurity about the problems,” the researchers wrote.
While the study included only a small number of patients, it showed that “sexual experience in both female and male patients with [Sjögren’s disease] is shaped by far more factors than physical sexual functioning alone,” the researchers wrote. “Many of the interviewed patients reported an unmet need for support, advice, and treatment of sexuality-related symptoms related to [Sjögren’s disease] within healthcare,” showing there’s a need for better medical support and open discussions about sexuality.
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