Understanding the Complex Link Between Ehlers-Danlos and Endometriosis

Have you ever felt like your body was playing a cruel joke on you? One day you're managing your Ehlers-Danlos Syndrome (EDS) symptoms, and the next you're wondering if something else is contributing to that relentless pelvic pain, heavy periods, and that never-ending feeling of being misunderstood. If you've been nodding along, you're not alone.

I've had countless conversations with people who describe that sinking feeling when doctors seem to dismiss their symptoms as "just part of EDS." But what if it's not just EDS? What if there's another player in this complex game of chronic illness something like endometriosis?

Let's explore this tricky intersection together, because your pain is real, your concerns are valid, and you deserve answers.

The Overlapping Symptoms Puzzle

Picture this: you're sitting in yet another doctor's office, trying to explain why your period feels like you're being stabbed repeatedly, why sex has become painful, and why your pelvic pain seems to have a mind of its own. Sound familiar?

Here's where things get complicated. Both EDS and endometriosis can cause:

• Chronic pelvic pain that seems to shift and change
• Menstrual irregularities that make your cycle unpredictable
• Pain during intercourse that makes intimacy feel like a minefield
• Heavy, painful periods that leave you exhausted and frustrated

It's like having two puzzle pieces that look almost identical how do you know which condition is causing what?

I remember talking to Sarah, who spent years hearing "it's just your EDS" before finally getting proper care. She told me, "I felt like I was losing my mind because the pain was getting worse, but everyone kept telling me this was normal for someone with EDS." That validation gap is real, and it's exhausting.

Why These Conditions Often Get Confused

Think of EDS as the architect of your body's structural challenges. When your connective tissue the scaffolding that holds everything together is weaker than it should be, it affects everything from your joints to your internal organs.

Your pelvic organs aren't immune to this. The ligaments and supportive tissues that keep your uterus, bladder, and other pelvic structures in place might be more fragile or stretchy than average. This can create that persistent pelvic discomfort that feels suspiciously like endometriosis pain.

The tricky part? Both conditions can make you feel like you're walking on eggshells. A simple cough might trigger pelvic pain. Changing positions could send shooting sensations through your lower abdomen. And don't even get me started on how both can turn intimacy into something you dread rather than enjoy.

What Does Science Actually Say About the Connection?

This is where things get interesting, and honestly, a bit frustrating for those of us seeking clear answers.

Research shows that somewhere between 6% and 23% of people with EDS also have endometriosis. Now, you might be thinking, "That sounds high!" But here's the thing the general population has about a 10% chance of developing endometriosis.

So while there might be a slightly higher prevalence, it's not dramatically different. What we're seeing is likely a symptom overlap rather than a direct cause-and-effect relationship.

Some fascinating research suggests that we might be over-diagnosing endometriosis in EDS patients because the symptoms are so similar. It's like mistaking a cat for a very small dog they're both furry and cute, but they're definitely different animals.

The biological connections are real, though. People with EDS often have weakened connective tissue around their uterine and pelvic organs, which can amplify discomfort and create pain patterns that mimic endometriosis. Additionally, many with EDS also deal with Mast Cell Activation Syndrome (MCAS), which can increase inflammation throughout the body including areas where endometriosis commonly occurs.

Hormones add another layer to this complex relationship. Estrogen, that powerful hormone that regulates your menstrual cycle, can influence both conditions. When estrogen levels fluctuate during your period, puberty, or pregnancy it can trigger or worsen symptoms in both EDS and endometriosis.

Navigating the Diagnostic Maze

Getting properly diagnosed when you have overlapping symptoms is like trying to solve a puzzle in the dark. You're missing pieces, and everything feels connected but unclear.

One of the biggest challenges is that there's no simple blood test or scan that can definitively diagnose endometriosis. The gold standard remains laparoscopic surgery yes, actual surgery to visually confirm the presence of endometrial tissue outside the uterus.

Meanwhile, EDS itself is often misunderstood by gynecologists who haven't kept up with the latest research. I've heard countless stories of people being dismissed or misdiagnosed because their doctors weren't familiar with how connective tissue disorders can affect reproductive health.

The risk of misdiagnosis is real and potentially harmful. Imagine undergoing unnecessary hormonal treatments or surgeries that might not address the root cause of your pain. Or worse, missing out on proper care for other EDS-related complications because everyone's focused on what they think is endometriosis.

So what can you do? For EDS diagnosis, look for clinicians who understand connective tissue disorders rheumatologists or specialists familiar with EDS are often your best bet. Genetic testing and clinical exams, including the Beighton score for joint hypermobility, can provide clarity.

For endometriosis diagnosis, work with a gynecologist experienced in complex cases. Imaging, pelvic exams, and detailed symptom tracking can help build a picture before considering surgical options.

Here's my gentle advice: if you have ongoing pelvic pain and EDS, don't ignore it. Seek out gynecologists who understand connective tissue disorders. It might take some research and possibly traveling to find the right specialist, but your health is worth that investment.

Finding Relief and Managing Symptoms

Managing both conditions simultaneously requires a delicate balancing act, kind of like juggling while riding a unicycle tricky but definitely possible with the right approach.

For EDS-related symptoms, treatment often focuses on symptom management:

• Hormonal contraceptives (when safe, considering EDS's potential clotting risks)
• Pain management strategies and supplements like magnesium or turmeric
• Pelvic floor physical therapy, which can be incredibly helpful for strengthening muscles weakened by EDS

For endometriosis management, options include:

• GnRH treatments or progestins to manage pain and estrogen effects
• Surgical excision in severe cases, though this requires careful consideration given healing challenges in EDS

The emerging treatment Ryeqo, which gained NICE approval in March 2025, offers new hope for those dealing with complex cases. It provides a balanced, reversible hormone treatment option that might be particularly beneficial for people managing both conditions.

Lifestyle modifications can make a significant difference too. Gentle movement that doesn't aggravate your EDS symptoms, dietary changes toward anti-inflammatory foods, and psychological support through counseling or support groups can all contribute to better quality of life.

I've seen amazing transformations when people find that combination of treatments that works for their unique situation. It's not about finding one magic solution it's about creating a personalized toolkit that helps you manage both conditions effectively.

Living Well with Both Conditions

Living with both EDS and endometriosis isn't just physically challenging it takes an emotional toll too. The chronic pain and fatigue can feel overwhelming, especially when you're also dealing with the frustration of misdiagnoses and medical gaslighting.

I'll never forget talking to Maria, who said, "It took me 12 years to be diagnosed with EDS, and five of those years to find a doctor who would even consider that my pelvic pain might be something other than normal EDS symptoms." Her story reflects what so many others experience a journey marked by persistence and hope.

The good news? You're not alone, and there are practical steps you can take to improve your daily experience:

• Keep a detailed symptom diary to track patterns and triggers
• Seek out specialists who understand both conditions
• Use apps like Endo App, Chronilabs, or Flaredown to monitor your symptoms
• Invest in comfortable, structured clothing that supports your body without restricting movement

Connecting with others who understand your experience can be incredibly validating. Whether through online communities, local support groups, or connecting with others at medical appointments, finding your tribe matters.

What You Need to Remember

There's an important distinction to make here: while EDS and endometriosis often cause overlapping symptoms, one doesn't necessarily cause the other. It's more accurate to think of them as two separate conditions that can create similar challenges in your body.

Research suggests that 6% to 23% of EDS patients also have endometriosis, which isn't dramatically different from the general population's 10% rate. What we're seeing is a symptom cluster that benefits from a multidisciplinary approach combining gynecology, pain management, and connective tissue expertise.

Your journey to better health might not be straightforward, and that's okay. What matters is that you keep advocating for yourself, seeking out knowledgeable healthcare providers, and building a support system that understands your complex reality.

Navigating both EDS and endometriosis is undoubtedly challenging, but understanding your body better can help you feel more in control. Whether your pain stems from EDS, endometriosis, or the interaction between both, getting the right support from the right specialists makes all the difference.

If you're tired of being dismissed or told your symptoms are "just part of having EDS," please remember this: your symptoms are valid, and you deserve better care. Don't hesitate to ask for comprehensive evaluations, bring support people to appointments, and never stop seeking answers.

Your body is trying to communicate with you listen to what it's saying, trust your instincts, and know that relief and better understanding are possible. You've already shown incredible strength by learning about these conditions, and that strength will carry you forward.

What resonates most with your experience? Have you found strategies that help manage both conditions? Share your thoughts your insights might be exactly what someone else needs to hear today.

Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always consult with a healthcare professional before starting any new treatment regimen.