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World Sjögren’s Day - A Day for Awareness

July 23 marks World’s Sjögren’s Day, which is the birthday of Henrik Sjögren, who first identified the disease in 1933. World Sjögren’s Day is a day to raise awareness, educate others about the disease, and raise funds for Sjögren’s research. Sjögren’s Syndrome is an autoimmune disease where the immune system attacks the glands that produce natural moisture throughout a person’s body. The immediate and most prevalent symptom is extensive dryness that affects the entire body. Sjögren’s Syndrome can also lead to dysfunction of organs like the kidneys, blood vessels, lungs, liver, the central nervous system and the gastrointestinal system.

If you’ve never heard of this syndrome, you may ask how prevalent it is? According to the Sjögren’s Syndrome Foundation, upwards of 4 million Americans are living with Sjögren’s (click here for foundation article) and 9 out of 10 patients with Sjögren’s Syndrome are women (click here for statistic). Sjögren’s Syndrome is a life-altering disease and today, patients all over the world will take the opportunity to share their story, educate friends and family, and raise awareness for Sjögren’s Syndrome. While Sjögren’s Syndrome affects many different facets of patients’ lives, intimacy is one area that might be overlooked for treatment.

Sjögren’s Syndrome And Intimacy

In a 2016 study, researchers found that Sjögren’s syndrome is linked to sexual dysfunction in women (click here for study). Women with Sjögren’s Syndrome reported lower levels of desire, arousal, orgasm, lubrication, and pain during intercourse compared to healthy controls. Being that 90% of Sjögren’s Syndrome patients are women, raising awareness for Sjögren’s Syndrome and understanding how it affects intimacy is extremely important. Some of the intimacy issues that women with Sjögren’s Syndrome can commonly have include vaginal dryness, pelvic pain during intercourse, fatigue, and mood symptoms.

Vaginal Dryness

Since Sjögren’s Syndrome can cause extreme dryness over the entire body, women with Sjögren’s Syndrome often experience severe vaginal dryness and turn to three common methods for relief:
  • Lubricants. Personal lubricants can be used for added ease and comfort during sexual intercourse and to supplement the body’s natural lubrication during sexual activity. Lubricants are fast acting and provide instant results for intercourse. The most common lubricants are silicone-based, oil-based, and water-based. Water-based lubricants are highly popular due to their non-staining nature. However, when choosing a water-based lubricant, factors such as osmolality, pH, and possibly irritating ingredients are important to consider.  (For an in-depth look at Personal Lubricants and Moisturizers, click here
  • Moisturizers. Vaginal moisturizers are intended to hydrate dry tissue by being absorbed by the vaginal lining, therefore mimicking the body’s natural lubrication. Vaginal moisturizers are used as a non-hormonal method for alleviating vaginal dryness and work to lower the pH to maintain moisture and acidity in the vagina. Unlike lubricants, which are used on a short-term basis for intercourse, effects of moisturizers are more long-term and can be applied 2-3 times per week (or even daily) to maintain vaginal moisture. (For more on the difference between Lubricants and Moisturizers, please read our blog post from SYLK’s Chief Medical Advisor, Dr. Michael Krychman here).
  • Hormones. Vaginal estrogen can alleviate vaginal dryness and might be the best option for some women. It is important to remain under close medical care while taking estrogen due to potential side effects including increased risk for heart attacks, stroke, blood clots, breast cancer, and dementia.

Pelvic Pain during Intercourse

Pelvic pain during intercourse could be caused by many factors including Sjögren’s Syndrome, interstitial cystitis, ovarian cysts, etc. It is recommended to see your healthcare provider to determine the root cause of the pelvic pain.
    • Pelvic physical therapy can be beneficial for some women with pelvic pain.
    • Additionally, using a lubricant during intercourse can be helpful for increased ease and comfort during sex.
  • Fatigue and Mood Symptoms

    Fatigue and depression can add to the daily challenges for those with autoimmune diseases and can affect sexual desire and function.
    • Be open with your healthcare provider if you are having feelings of depression. Treating depression can help with some problems pertaining to sexual function. Be aware that some antidepressant medications can have side effects such as vaginal dryness that impact sexual function.
    • Being aware of your Sjögren’s Syndrome and taking time for yourself is important and can help improve your mood and reduce stress levels.
    • Practice a high level of communication with your partner about fatigue and any mood symptoms of Sjögren’s Syndrome.
  • For Sjögren’s patients, it is vital to be open with your healthcare provider about all of your symptoms and concerns including intimacy and Sjögren’s. Open communication between partners is also key to have a complete understanding of needs and how to accommodate those needs.

    Having an autoimmune disease does not have to be a personal definition. Understanding your disease and seeking proper treatments make living a positive and healthy lifestyle attainable. On this day, we encourage Sjögren’s Syndrome patients to share their story, educate friends and family, and raise awareness for this autoimmune disease affecting millions of people all over the world.

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