EDS and Endo: The Connection You Need to Know About

If you have endometriosis, there's a good chance you might also have EDS, and understanding this connection between EDS and endometriosis could change everything about how you approach your health. May is EDS Awareness Month, making it the perfect time to explore why Ehlers-Danlos Syndromes and endometriosis occur together far more often than previously recognized.

Whether you've been diagnosed with EDS, suspect you might have it, or are just learning about hypermobility for the first time, understanding these conditions is crucial for managing your health comprehensively. This connection could be key to addressing symptoms that have puzzled you and your healthcare providers.

What Is Hypermobility vs EDS?

Hypermobility means your joints can move beyond the normal range of motion. Some people have joint hypermobility that doesn't cause significant symptoms, while others experience pain, instability, and other issues even with milder degrees of hypermobility.

When hypermobility causes symptoms but doesn't meet the criteria for EDS, it's classified as Hypermobility Spectrum Disorder (HSD). HSD replaced the outdated term "benign joint hypermobility syndrome" because these conditions are far from benign; they can cause significant pain, fatigue, and functional limitations.

Ehlers-Danlos Syndromes (EDS), however, are a group of genetic connective tissue disorders that affect collagen production. Collagen is the protein that provides structure and strength to your skin, joints, blood vessels, and organs. When collagen is faulty, it affects the integrity of these tissues throughout your body.

The main difference is that EDS has additional criteria beyond just joint hypermobility, including skin and connective tissue involvement, family history, and other systemic features. HSD and EDS exist on a spectrum, and both deserve proper recognition and treatment.

EDS Subtypes: Understanding the Spectrum

There are 13 recognized subtypes of EDS, each with distinct characteristics and genetic markers. However, the most common type is Hypermobile EDS (hEDS), which affects an estimated 1 in 3,000 to 5,000 people. What makes hEDS unique is that it's currently the only subtype without an identified genetic marker, making diagnosis rely entirely on clinical criteria.

Other subtypes include Classical EDS, Vascular EDS, and Kyphoscoliotic EDS, each with specific genetic mutations and distinct symptom patterns. Most of these rarer forms have identifiable genetic markers and often present with more severe complications. While it's possible to have hEDS and another EDS subtype, this is extremely rare.

The Trifecta: EDS, POTS, and MCAS

If you have EDS, you've likely heard of "the trifecta", the common co-occurrence of EDS with Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). This combination isn't coincidental; these conditions share underlying connective tissue and autonomic nervous system dysfunction.

POTS causes your heart rate to increase dramatically when standing, leading to dizziness, fatigue, and brain fog. MCAS involves inappropriate activation of mast cells, causing allergic-type reactions, digestive issues, and systemic inflammation. When you have faulty collagen affecting blood vessels and connective tissue throughout your body, these secondary conditions become much more likely.

Assessment Tools: Beyond the Beighton Scale

Most people associate an EDS diagnosis with the Beighton Scale, a 9-point assessment that tests specific joint movements. While useful, the Beighton Scale is just one piece of the diagnostic puzzle and has significant limitations. It doesn't account for age-related stiffening, previous injuries, or hypermobility in joints that it doesn't test.

I made an Instagram Reel describing the Beighton Scale. Check it out. For adults under 50, a score of 5 or more, and over 50, a score of 4 or more means a positive hypermobility score.

https://video.wixstatic.com/video/1667cd_83018b18f978476bbf75a9f74467c73f/360p/mp4/file.mp4

The 5-Point Questionnaire asks about your historical flexibility:

• Can you now (or could you ever) place your hands flat on the floor without bending your knees?

• Can you now (or could you ever) bend your thumb to touch your forearm?

• As a child, did you amuse your friends by contorting your body into strange shapes, or could you do the splits?

• As a child or teenager, did your shoulder or kneecap dislocate on more than one occasion?

• Do you consider yourself double-jointed?

Additional assessments include upper and lower extremity tests that examine areas the Beighton Scale misses, such as shoulder flexibility, ankle mobility, and spinal extension. A comprehensive evaluation considers your entire body, not just select joints.

Common Symptoms and Digestive Connections

EDS affects far more than joint flexibility. Common symptoms include chronic pain, fatigue, skin that bruises easily, slow wound healing, and autonomic dysfunction. Digestive issues are particularly prevalent, including gastroparesis (delayed stomach emptying), chronic constipation, SIBO, and food intolerances.

The digestive complications happen because collagen defects affect the smooth muscle in your intestinal walls, disrupting normal motility. The same connective tissue abnormalities that make your joints hypermobile also affect the structural integrity of your digestive organs, from the esophagus and stomach to the intestines and pelvic organs. This can lead to issues like gastroparesis, intestinal dysmotility, and even organ prolapse. Additionally, autonomic dysfunction can impair the nerve signals that coordinate digestion, while increased intestinal permeability can trigger inflammatory responses and food sensitivities.

The EDS-Endo Connection

Recent research is revealing striking connections between EDS and endometriosis that go far beyond coincidence. Studies suggest that people with endometriosis have significantly higher rates of hypermobility and EDS than the general population, with some research showing up to 57% of endometriosis patients meeting criteria for hypermobility spectrum disorders.

The connection becomes even clearer when looking at pelvic pain prevalence. Research from the Norris lab found that pelvic pain was present in 80% of hEDS patients and 66% of those with HSD, rates far higher than in the general population. This significant overlap suggests shared underlying mechanisms between hypermobility disorders and pelvic pain conditions like endometriosis.

This connection makes biological sense. Both conditions involve connective tissue abnormalities, chronic inflammation, and dysregulated immune responses that are associated with increased mast cell activation and histamine intolerance.

If you have endometriosis, especially if you experience joint pain, easy bruising, digestive issues, or autonomic symptoms like heart palpitations and temperature dysregulation, it's worth discussing EDS evaluation with your healthcare provider. Conversely, if you have EDS and experience pelvic pain, painful periods, or unexplained abdominal symptoms, endometriosis screening may be warranted.

If you're considering endometriosis excision surgery, it's crucial to inform your surgeon about any hypermobility or EDS diagnosis. Hypermobile tissues require special surgical considerations for wound healing, suture techniques, and post-operative care to minimize complications and optimize outcomes.

Common EDS Myths

Let's dispel some persistent myths about EDS:

Myth: "You have to be extremely flexible to have EDS." Reality: Hypermobility can be subtle and localized to specific joints. Some people with EDS appear relatively "normal" in flexibility, especially as they age or if they've developed muscle guarding to protect unstable joints.

Myth: "Being hypermobile is advantageous; it's cool to be double-jointed."

Reality: While hypermobility might seem like a fun party trick or give you an edge in certain activities, many people experience significant pain, instability, and dysfunction. What appears to be a superpower can actually come with serious challenges.

Myth: "EDS is rare, so I probably don't have it." Reality: While some of the subtypes of EDS are rarer, hEDS is the most common. The combined prevalence of HSD and hEDS is 1 in 600 to 1 in 900, making it more common than many realize. It's likely underdiagnosed, particularly in women whose symptoms are often dismissed as anxiety or normal aging.

Myth: "There's nothing you can do about EDS."Reality: While there's no cure for EDS, comprehensive management, including appropriate exercise, manual therapy, lifestyle modifications, and symptom-specific treatments, can significantly improve quality of life.

Exercise and Proprioception for Hypermobile Bodies

Exercise is crucial for people with EDS, but it requires a thoughtful approach. Hypermobile bodies are master compensators, quickly developing alternative movement patterns when joints become unstable or painful. While protective initially, these compensations often create new problems in other areas. Joints rely more heavily on muscular support since the ligaments provide less stability. This makes proprioception, your body's awareness of joint position and movement, essential.

Traditional fitness advice often doesn't apply to hypermobile bodies. High-impact activities, overstretching, and end-range movements can worsen joint instability.

Instead, focus on:

• Controlled, mid-range movements that build strength without pushing joints to their limits.

• Isometric exercises and slow, deliberate movements, or time under tension, help develop the muscular control needed to protect hypermobile joints.

• Proprioceptive training using unstable surfaces, balance challenges, and closed-chain exercises teaches your nervous system to coordinate joint stability better.

• Weighted items, the body braid, and higher weight/fewer reps for resistance exercise can provide valuable feedback to help your body better sense joint position.

• Tactile cues such as kinesiology tape, compression garments, or textured surfaces also enhance proprioceptive awareness by giving your nervous system additional information about where your body is in space.

• Low-impact activities like swimming, pilates, and yoga (with modifications) can be excellent choices when performed with proper awareness of your body's limitations.

Why Mind-Body Approaches Work for EDS

People with EDS often respond exceptionally well to manual therapy and mind-body approaches, and there are good reasons why. Chronic pain and joint instability create patterns of muscle guarding and compensation that compound the original problems. Manual therapy can help reset these patterns while improving circulation and nervous system regulation.

The mind-body connection is particularly important for hypermobile individuals who often struggle with body awareness and proprioception. Techniques that enhance mindful movement, breathing awareness, and nervous system regulation can be transformative.

Additionally, many people with EDS have experienced medical trauma from years of dismissed symptoms and misdiagnosis. Approaches that honor the person's experience while addressing both physical and emotional aspects of their condition tend to be most effective.

What This Means for Pelvic and Visceral Physical Therapy

As pelvic and visceral physical therapists, we see the profound impact EDS can have on pelvic floor function, digestive health, and overall well-being. Hypermobility affects the entire kinetic chain, including the pelvic floor muscles, which must work harder to provide stability when surrounding joints and connective tissues are lax.

Many of our EDS patients experience pelvic organ prolapse, urinary dysfunction, sexual dysfunction, and chronic pelvic pain related to their underlying connective tissue disorder. The autonomic dysfunction common in EDS also significantly impacts digestive function, creating the visceral hypersensitivity and motility issues we discussed in our previous blog post.

Our approach with EDS patients emphasizes gentle manual therapy, breath work, and movement re-education rather than aggressive stretching or high-intensity exercises. We focus on building stability through the core and pelvic floor while respecting tissue fragility and hypermobility.

Do You Need a Formal EDS Diagnosis?

Getting an hEDS diagnosis can be challenging; there's no genetic test, and knowledgeable practitioners are hard to find. The good news? Whether you have hEDS or HSD, the management strategies are very similar.

A formal diagnosis can be helpful, but don't let the pursuit of a label prevent you from getting care now. Focus on finding healthcare providers who understand hypermobile bodies and can help manage your symptoms effectively.

There's also emerging research expected later this year that may provide new insights into hEDS diagnosis and treatment, potentially making the process clearer in the future.

The bottom line: your symptoms are real and deserve treatment, regardless of whether you have an official diagnosis. Start with what you can control: proper exercise, joint protection strategies, and comprehensive symptom management.

Practical Management Tips

Living well with EDS requires a comprehensive toolkit. Here are some strategies that can make a real difference:

Compression garments like compression socks or sleeves can provide proprioceptive feedback and joint support. As someone with POTS, I personally rely on my Jelliebend compression sleeve that keeps my rib cage and pelvis lined up and core supported, as well as compression socks to help manage my symptoms and provide that extra stability feedback my joints need.

Electrolyte support is crucial, especially if you have POTS alongside EDS. I use LMNT regularly to maintain proper hydration and electrolyte balance, which helps with both energy levels and autonomic function.

Sleep support through proper pillows and mattress selection can prevent morning stiffness and joint pain. Many EDS patients benefit from memory foam or adjustable beds that provide better spinal alignment.

Pacing and energy management help prevent the boom-bust cycle common in chronic conditions. Learning to recognize your limits and plan activities accordingly can prevent flares and improve overall function.

We Understand This Population

At our practice, we deeply understand the EDS and hypermobility community because we live it ourselves. Having POTS and understanding the daily reality of managing hypermobility, autonomic dysfunction, and chronic symptoms gives us unique insight into what our patients need.

We know that EDS affects every aspect of your life. Our approach is informed not just by clinical training but by lived experience and genuine understanding of these complex conditions.

Whether you're newly diagnosed, still seeking answers, or looking for providers who truly "get it," know that effective, compassionate care for EDS is possible. You deserve healthcare providers who understand the complexity of your condition and the very real impact it has on your daily life.

If you suspect you might have EDS or hypermobility spectrum disorder, especially if you also have endometriosis, trust your instincts and advocate for proper evaluation. The connection between these conditions is real, and understanding it could be the key to finally getting the comprehensive care you deserve.