Women's Health and Hormones in hEDS

See below for Polycystic Ovarian Syndrome

See separate Information page on Hormonal and Endocrine Issues

Women with hypermobile Ehlers-Danlos syndrome (hEDS) often face a distinct and complex set of health challenges related to hormonal changes, reproductive function, and pelvic stability. From adolescence through menopause, symptoms such as painful or heavy periods, pelvic floor dysfunction, and pregnancy complications are reported at much higher rates than in the general population. These issues are believed to arise from a combination of connective tissue fragility, hormonal sensitivity, and comorbid conditions like postural orthostatic tachycardia syndrome (PoTS) and mast cell activation syndrome (MCAS). While formal research is still emerging, clinical observations and growing evidence now support a more comprehensive understanding of how hEDS affects women's health across the lifespan.

Research and Clinical Observations

Women with hypermobile Ehlers-Danlos syndrome (hEDS) experience a wide range of gynecologic and reproductive issues, many of which are closely linked to hormonal changes. These symptoms often begin in adolescence and evolve throughout menstruation, pregnancy, and menopause.

Studies show

• Up to 76% of reproductive-age women with hEDS report menorrhagia (heavy periods)

• 58–92% report dysmenorrhea (painful periods)

• Up to 50% experience intermenstrual bleeding (bleeding between periods)

• About 50% experience vulvodynia (chronic pain in the vulva without a clear cause)

• 43–77% report dyspareunia (painful intercourse)

• 71% report pelvic pain, with dysmenorrhea and joint/back pain rated as most severe

These symptoms tend to worsen during periods of hormonal fluctuation, such as

• Puberty

• The premenstrual phase

• Postpartum period

• Use of hormonal contraception

• Perimenopause and menopause

There is also a higher prevalence of pelvic floor dysfunction, urinary incontinence, vulvodynia, and sexual dysfunction, which may stem from a combination of weak connective tissue, joint instability, and autonomic dysfunction.

Theories Behind Hormonal Sensitivity in hEDS

• Hormonal Fluctuations and Collagen

  • Estrogen influences collagen turnover

  • Hormonal shifts may temporarily weaken connective tissues, worsening pain and instability

• Pelvic Instability and Prolapse

  • Lax ligaments and fascia increase risk of bladder, uterine, or rectal prolapse

  • Muscle coordination in the pelvic floor is often poor, contributing to incontinence and pelvic pain

• Small Fiber Neuropathy and Pain Amplification

  • Loss of nerve fibers may increase pain during menstruation and sex

  • Chronic pelvic and vaginal pain may also stem from abnormal pain processing

• Autonomic Dysregulation

  • Fluctuating estrogen can worsen symptoms of PoTS, fatigue, and migraines, especially premenstrually

• Comorbid Conditions

  • MCAS may worsen bleeding and pain

  • POTS may increase the risk of dizziness or fainting during menstruation or pregnancy

Pregnancy, Fertility, and Menopause

Pregnancy in hEDS carries both challenges and opportunities. Most pregnancies result in healthy outcomes, but risks are higher for

• Joint instability and pelvic pain

• Preterm labor (6–25% prevalence)

• Spontaneous abortion (28–57%)

• Postpartum hemorrhage

• Wound healing issues (e.g., after cesarean or tearing)

• Infertility (reported in 44% of women with hEDS, compared to ~10–15% in the general population)

Menopausal transition can lead to worsening pain, fatigue, and pelvic symptoms in some women, though others report symptom improvement after menopause. There is no evidence for increased gynecologic cancer risk in hEDS.

Common Symptoms in Women with hEDS

• Painful, heavy, or irregular periods

• Premenstrual flares (fatigue, joint pain, headaches)

• Pelvic organ prolapse or incontinence

• Painful sex, reduced sexual sensation

• Chronic pelvic pain or vulvodynia

• Increased risk of miscarriage or infertility

• Hormone-related migraines

• Symptoms resembling PCOS (e.g., irregular cycles, acne, excess hair)

Treatment Options

• Menstrual and Hormonal Symptoms

  • Progesterone-only pills

  • Levonorgestrel-releasing IUDs (e.g., Mirena)

  • Avoiding estrogen in those with migraine, PoTS, or MCAS

  • NSAIDs for cramps (caution if GI issues)

• Pelvic and Musculoskeletal Issues

  • Pelvic floor physical therapy

  • Support belts in pregnancy

  • Core strengthening and flexibility training

  • Referral to pelvic specialists

• Fertility and Pregnancy

  • Pre-conception counseling with high-risk OB/GYN

  • Monitoring for joint, bleeding, or autonomic issues

  • Delivery planning tailored to joint protection and symptom management

  • Postpartum pelvic rehab

• Migraine

  • Triptans, magnesium, riboflavin

  • Hormonal stabilization

  • Assessment for comorbid POTS or MCAS

• Emerging or Theoretical Therapies

  • Low-dose naltrexone (for neuropathic pelvic pain)

  • Hormone modulation (e.g., bioidentical hormones in menopause)

  • Vitamin C and lysine (for tissue support)

  • Mast cell stabilizers and histamine-reduced diets

  • Botox for pelvic floor pain (investigational)

Summary

Women with hEDS face a significant burden of hormone-related and reproductive health issues, including heavy periods, pelvic instability, dyspareunia, infertility, and miscarriage. These symptoms often fluctuate with hormone levels and are worsened by comorbid conditions like PoTS and MCAS. Evidence-based and supportive care—including hormonal regulation, physical therapy, and multidisciplinary pregnancy planning—can significantly improve outcomes. While research is ongoing, a growing body of data supports targeted management strategies across the female lifespan.

Polycystic Ovarian Syndrome (PCOS) and hEDS

There is increasing evidence of a connection between hypermobile Ehlers-Danlos (hEDS) and polycystic ovarian syndrome (PCOS). While the exact link is not fully understood, a growing number of women with hEDS appear to meet diagnostic criteria for PCOS, suggesting a possible overlap in pathophysiology.

What Is PCOS?

PCOS is a hormonal disorder that includes

• Irregular or absent ovulation

• Elevated androgens (e.g., testosterone)

• Polycystic ovaries (on ultrasound)

Common symptoms include

• Irregular or absent periods

• Acne and oily skin

• Hirsutism (unwanted facial/body hair)

• Weight gain or difficulty losing weight

• Insulin resistance or prediabetes

• Fertility challenges

Prevalence in hEDS

One large study found a higher-than-expected prevalence of PCOS-like symptoms in women with hEDS, however, not all women with hEDS and irregular periods meet formal diagnostic criteria. Diagnosis should follow established standards (e.g., Rotterdam criteria), even when overlapping symptoms occur.

Possible Shared Mechanisms

• Hormonal Imbalance

  • Both conditions may involve excess androgens and hormonal sensitivity

  • Estrogen/progesterone fluctuations may aggravate symptoms in both disorders

• Connective Tissue Changes

  • Some theories suggest androgens may alter collagen, affecting tissue laxity and possibly contributing to hypermobility

• Metabolic and Autonomic Symptoms

  • Fatigue, dizziness, and poor temperature regulation are common to both hEDS and PCOS

  • Insulin resistance may worsen joint pain, fatigue, and weight control.

• Overlapping Reproductive Issues

  • Both conditions are associated with irregular periods, infertility, and pregnancy complications

Treatment Considerations in hEDS

• Hormonal Therapy

  • Progesterone-only contraception and levonorgestrel IUDs are often preferred for those with migraine or PoTS

  • Combined estrogen therapies may be used cautiously, based on individual risk

• Metabolic Support

  • Metformin may help regulate cycles and improve insulin sensitivity.

  • Weight-neutral or supportive dietary strategies are often beneficial.

• Anti-Androgens

  • Medications like spironolactone may reduce acne and excess hair growth.

• Lifestyle Interventions

  • Exercise and dietary changes support both metabolic and joint health.

  • PCOS-related weight gain may worsen fatigue and pain in hEDS, making weight management a shared treatment goal.

• Coordinated Care

  • Collaboration among gynecologists, endocrinologists, and physical medicine providers improves outcomes in women with both hEDS and PCOS.

Summary

PCOS is more common in women with hEDS than in the general population, though formal diagnosis is still essential. Shared symptoms such as irregular cycles, androgen excess, metabolic imbalance, and fertility challenges suggest overlapping causes. Treatment plans should be personalized and take into account comorbid conditions like PoTS and MCAS, as well as the unique physical and hormonal sensitivities associated with hEDS.