Ehlers-Danlos syndromes (EDS) are a group of rare hereditary chronic diseases which cause collagen deficiency in the body leading to weakness of connective tissues that support the joints, organs, bones, and skin. People with EDS experience a wide range of symptoms and other conditions including chronic pain, bleeding disorders, migraines, and high-risk pregnancies. Recent research suggests that early gynecological care and elective hormonal treatment for people with EDS might help improve their quality of life.
Previous research had shown that people with EDS report worsening of chronic pain and ligament weakness at particular times: during puberty, after giving birth, and prior to menstruation. That link suggests a possible association between EDS symptoms and hormonal levels. For instance, the levels of the hormone progesterone increase during the luteal phase, which begins after ovulation and ends at menstruation. Existing hormonal contraceptives are already known to regulate progesterone levels, so scientists have considered using these drugs to help young people with EDS. Unfortunately, these medications may clash with other conditions associated with EDS, potentially leading to decreased bone mineral density and increased blood clot formation.
In the more recent study from the University of California San Francisco-Fresno and Baylor College of Medicine, researchers evaluated the menstrual information, gynecological complaints and prescribed interventions from medical records spanning 10 years for 26 patients aged 12 to 16. Their findings suggest that the long-term reversible contraceptives such as intrauterine devices (IUDs) could be an option for patients with EDS. But other options less invasive than IUDs may also work. The authors note that referring more children and teenagers with EDS to gynecological care could make a big difference in giving them better treatment.
We need further research on EDS because of how detrimental the disease can be. Due to the associated complications of EDS, it is important to consider what types of contraceptives to use. Collecting information on treatments brings promise to the possibility of controlled studies testing different hormonal treatments to manage EDS symptoms.