By: Dr. Mallory A. Stuparich, Endometriosis Surgeon, Orange County, Southern California
At Endometriosis Surgical Specialists International (ESSI), we recognize that many patients seeking answers for chronic gynecological pain discover complex, interconnected diagnoses. Among these is hypermobile Ehlers-Danlos Syndrome (hEDS), a connective tissue disorder with unique implications for gynecological health. Here’s what recent research reveals about the association between hEDS and endometriosis.
What is Hypermobile Ehlers-Danlos Syndrome?
hEDS is the most common subtype of Ehlers-Danlos Syndromes—a group of hereditary disorders that affect connective tissue strength and elasticity. hEDS is characterized by joint hypermobility, chronic pain, fragile skin, and sometimes, abnormal bleeding. [1]
Gynecological Symptoms in hEDS
Women with hEDS experience significantly higher rates of gynecological symptoms compared to the general population. Peer-reviewed research highlights:
- Menorrhagia (heavy periods) in up to 76% of women with hEDS
- Dysmenorrhea (painful periods) in 72%
- Dyspareunia (painful intercourse) in 43% [1]
These symptoms often overlap with those seen in endometriosis and can impact both daily life and reproductive health.
Endometriosis Prevalence in hEDS
The prevalence of endometriosis among women with hEDS remains a matter of debate. A peer-reviewed cohort study of 386 women with hEDS found that:
- The prevalence of endometriosis was similar to the general population, around 6%. [1]
- Higher rates of chronic pelvic pain, abnormal bleeding, and dysmenorrhea in hEDS can mimic endometriosis, potentially leading to clinical overdiagnosis. [2][1]
- Some larger studies using self-reported questionnaires suggested higher rates; however, these lacked clinical confirmation and may have overestimated the true rate. [1]
Joint Hypermobility and Endometriosis Severity
Conversely, research also demonstrates that women with endometriosis often exhibit greater joint hypermobility than the general population, especially in advanced stages of the disease: [3]
- Stage IV endometriosis (severe) is linked to joint hypermobility rates as high as 60%. [3]
- Chronic inflammation and hormone dysregulation present in both conditions may explain this overlap.
Diagnosis and Treatment Implications
It is essential to distinguish between gynecological symptoms caused by hEDS versus endometriosis. Peer-reviewed experts note:
- Not all pelvic pain or menstrual irregularities in hEDS are due to endometriosis.
- Increased awareness can help avoid unnecessary or risky surgeries. [1]
- Management may include medical therapy, pain management, and multidisciplinary care tailored to connective tissue disorders.
Key Takeaway
While gynecological symptoms are highly prevalent in women with hEDS, the true prevalence of endometriosis does not appear to be dramatically increased. However, the overlapping symptoms make careful assessment crucial. At ESSI, our multidisciplinary team provides personalized diagnostic and treatment pathways for complex cases involving both hEDS and endometriosis.
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