Sexual Functioning in Women with Scleroderma: The Taboo Report
Submitted by Brooke Levi, undergrad student at McGill University.  Brooke will graduate in December, 2011 with a B.Sc. in neuroscience and hopes to pursue a career in epidemiology.   Her current work as a student research assistant for the Behavioral Health Research Group at Jewish General Hospital (Montreal), under the spurpervision of Dr. Brett Thombs, has resulted in this article.  Brooke reports that a large part of the research the team does is for the Canadian Scleroderma Research Group (CSRG), focusing on the psychosocial aspects of scleroderma.

Sexual Functioning in Women with Scleroderma: The Taboo Report
Brooke Levi

Sex. It’s a topic few people are comfortable discussing. Because of this, we don’t know much about how scleroderma may affect a person’s sex life. Are most people with scleroderma sexually active? Are those who are active experiencing problems? What types of pain are common during sexual activity, especially in women, and what can be done to reduce the pain and discomfort? These are just a few questions that may be difficult to talk about, but for which answers are needed. So, lock your doors, pull down the shades, and read on. Nobody is going to judge you, and hey, you might even learn something!

Impaired sexual function is common among women with chronic illnesses, including women living with scleroderma. But what exactly is impaired sexual functioning? In the world of sexual functioning research, impaired sexual function refers to problems such as reduced desire and enjoyment, impaired arousal, difficulty reaching orgasm, and painful sex.

There are several physical and psychological consequences of scleroderma that might be expected to affect sexual functioning among women. These include fatigue, depression, shrinking of the mouth, changes in appearance, Raynaud’s phenomenon, skin tightening and discomfort, vaginal tightness and dryness, thickening of the skin around the lips, finger ulcers and calcium deposits that are painful to the touch, gastrointestinal symptoms, joint pain and muscular weakness.

Existing studies of sexual functioning in scleroderma have found that rates of sexual impairment are high. Research in this area, however, has been limited. Some studies have assessed impairment by asking only a single question (rather than using validated methods). Other studies have not distinguished between sexual inactivity (which may or may not be related to scleroderma) and sexual impairment. In addition, some studies have had small numbers of participants and/or looked only at a limited number of possible causes for impairment.

Our research team used data from the Canadian Scleroderma Research Group (CSRG) Registry in order to look at: (1) the rate of sexual activity among women with scleroderma and, specifically, women in relationships; (2) the rate of sexual impairment among women who are sexually active; (3) key scleroderma symptoms related to sexual activity and impairment; and (4) common sources of pain during and after sex among women both with and without impaired sexual function.
We determined the rate of sexual activity by asking the question, “During the past 4 weeks, have you engaged in sexual activities with your partner?” Women who answered “no” were asked to give reasons why they were not engaging in sexual activity. Women who answered “yes” completed a 9-item version of the Female Sexual Function Index (FSFI), which asks questions about sexual functioning over the past 4 weeks, as well as a checklist of sources of pain experienced during and after sexual activity.

Overall, we found that 43% of the women in our sample were sexually active. Among those in relationships, 55% reported being sexually active. Women who were younger and who had fewer gastrointestinal symptoms and fewer Raynaud’s symptoms were more likely to be sexually active.  Reasons for inactivity included “lack of interest in sex” (81%), “my scleroderma symptoms interfere with sexual activity” (44%) and “I have some other health problem that interferes with sex” (32%). Among the sexually active women, 62% were classified as being sexually impaired, meaning that they encountered significant difficulties when they engaged in sex. Women who were older and who had greater skin involvement and more severe breathing problems were more likely to be sexually impaired.

Among the active women, 62% reported at least one source of pain during sexual activity, and 38% reported at least one source of pain after sexual activity. Sources of pain experienced by at least 10% of women during sexual activity included vaginal pain, joint pain, muscle pain, finger or hand pain, and back pain. Sources of pain reported by at least 10% of women after sexual activity included vaginal pain and joint pain. Both during and after sex, the rates for each different pain source were much higher among those sexually impaired compared to those not impaired. Specifically, women who were sexually impaired were more than twice as likely to report pain during or after sex, and more than 8 times as likely to report vaginal pain.

Several suggestions have been made for women with scleroderma in order to reduce their pain and discomfort during sexual activity. For example, the use of a water-based lubricant may be useful to reduce vaginal dryness. Remaining partly clothed, using extra blankets and adjusting room temperature may help to keep warm and reduce the likelihood of a Raynaud’s episode. A warm bath before sexual activities, trying different positions, and using pillows may reduce the effects of painful joints. In addition, anti-inflammatory drugs and muscle relaxants may help with muscle and joint pain. Eating small meals and/or avoiding eating right before sexual activity may be helpful for individuals with gastrointestinal problems. Finally, good communication during sexual activity is essential so that partners are aware of what is pleasurable and painful. It is important to note, however, that these suggestions for improving the sexual experience of women with scleroderma have not yet been tested.

In summary, many women with scleroderma who are in relationships are sexually active, although few who are active are free of problems. More research is needed to better understand female sexuality in scleroderma and to determine how best to address issues of impairment.