New study finds sexual dysfunction is common in scleroderma

Patients rarely discuss sexual issues with their doctors, however by Marisa Wexler, MS | September 2, 2025

​Sexual dysfunction is common among people with systemic scleroderma, but is rarely discussed between patients and their doctors, a new study shows.

In the study, “Sexual dysfunction and perceptions of rheumatologist engagement on this issue in patients with systemic sclerosis,” the researchers said the reasons for this can be “due in part to low comfort level, time restraints, and uncertainty related to the role of the rheumatologist in this health domain.” The study was published in the Journal of Scleroderma and Related Disorders.

Systemic scleroderma, or systemic sclerosis (SSc), is marked by scar tissue accumulating in various organs and can result in a range of symptoms that may cause problems during sexual intimacy. The disease leads to impaired blood flow to the genitals, which can result in erectile dysfunction or vaginal dryness. Other symptoms, like impaired hand mobility or incontinence, can also pose obstacles during sex.

Studies that assess sexual dysfunction in SSc have traditionally used standard questionnaires such as the Female Sexual Function Index (FSFI) for women or the International Index of Erectile Function (IIEF) for men. These indexes, which are designed for the general population, may not capture the nuanced ways in which SSc can affect sexual expression, however.
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Scientists in the U.S. developed the Sexual Function in SSc Questionnaire to create a more disease-specific measure of sexual dysfunction in SSc. The new questionnaire was administered to 41 people with SSc. Of them, 26 (63%) reported some form of sexual dysfunction, a rate consistent with those in prior studies. Specific issues related to sex included a lack of desire, pain, lack of lubrication, trouble climaxing, erectile dysfunction, fatigue, and recurrent vaginal infections.

​A common problem, but one not often discussed
Even though sexual dysfunction was common among these patients, almost all said they hadn’t discussed sexual health with their rheumatologist.
“Sexual dysfunction is highly prevalent among participants with SSc … however, 88% reported never discussing this issue during physician visits, due in part to low comfort level, time restraints and uncertainty related to the role of the rheumatologist in this health domain,” the researchers wrote.

There were no associations between sexual dysfunction and factors such as age, sex, race, SSc subtype, and the time since diagnosis, statistical analyses showed.

Since sexual dysfunction is common in SSc and there were no clear risk factors, the researchers said healthcare providers should bring up the topic with patients so support can be given where needed. More education is needed to help facilitate these conversations, they said.

Along with the new questionnaire, 30 patients completed the standard FSFI or IIEF. Interestingly, scores on the new questionnaire only partially aligned with these standard assessments. Among those who reported sexual dysfunction on the questionnaire, 25% didn’t meet the criteria for it on the FSFI/IIEF. Conversely, 60% of people who reported no sexual dysfunction on the questionnaire met the standard assessment criteria. These discrepancies underscore the need for more assessments tailored to the impact of the specific disease, the researchers said.
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“Self-reported sexual dysfunction did not correlate well with validated questionnaires, suggesting the need for the development and validation of SSc-specific tools to adequately screen for sexual dysfunction and address sexual health issues in SSc,” the scientists wrote.