Navigating Ehlers-Danlos Syndrome: Understanding its Impact on Women’s Health

Hey everyone, it’s Friday, which means it’s time for our weekly compilation video. As you can see, my office is getting cleaned out here in Bartlesville as I transition over to The Haven Center for Sexual Medicine and Vulvo Vaginal Disorders. The clinic opens on the 4th of October, so if you have any questions about that, be sure to send them my way.

Next Monday night, Jacqueline from the Lost Labia Chronicles and I are doing an Instagram live discussing lichen sclerosus and autoimmune disease. So, if you’re watching this today and have questions about that, shoot either her or myself a message, and we’ll answer them.

This week, we’ve been talking about Ehlers-Danlos Syndrome (EDS) and how it relates to women’s health. If you’re unfamiliar with EDS, it’s essentially a collection of syndromes or conditions that affect the way connective tissue forms. While many think of collagen in terms of skin, it’s present throughout the body in joints, muscles, and blood vessels. Therefore, any condition affecting collagen can lead to various issues.

Currently, there are 13 described EDS subtypes, but there could be more. Each subtype presents unique challenges, so seeking a healthcare provider knowledgeable in the condition is crucial for proper treatment.

In gynecology, EDS primarily impacts pregnancy, pelvic health, sexual health, menstruation, and menopausal changes. Throughout different life stages, patients may experience specific challenges:

  • Pre-pubertal: Children with EDS, especially hypermobility types, may exhibit flexibility and joint issues. Vigilance is required to identify signs like frequent dislocations or strains.
  • Menstruation: EDS patients often have heavier periods due to impaired uterine cramping and increased vascular fragility.
  • Sexual Activity: Pain with penetration and decreased lubrication are common, stemming from fragile skin, tear-prone tissues, and pelvic floor spasms.
  • Pregnancy: EDS may lead to increased joint pain, preterm labor risk, and complications during childbirth, such as rapid or prolonged labor.
  • Postpartum: Pelvic organ prolapse and delayed wound healing, including after C-sections, are more prevalent.
  • Menopause: Genitourinary symptoms of menopause, such as vaginal dryness and pain with intercourse, are exacerbated in EDS patients due to collagen-related issues.

Despite advancements, diagnosing EDS remains challenging, often requiring genetic testing or skin biopsies. However, awareness and understanding among healthcare providers can aid in timely diagnosis and management.

EDS is not just a medical curiosity but a complex condition that profoundly affects patients’ lives. The key takeaway is self-advocacy; if something feels wrong, seek professional help and find providers who understand EDS. Though rare, EDS may be more common than we think, and as our knowledge expands, so will our ability to support those affected.

In conclusion, navigating EDS requires a multidisciplinary approach and ongoing education. By recognizing its impact on women’s health and empowering patients to advocate for themselves, we can strive for better outcomes and improved quality of life. That’s it for today’s video.