If you are a woman who has spent years in doctors’ offices describing joint pain, fatigue, easy bruising, and a body that seems to fall apart faster than it should, and you have walked out with a diagnosis of anxiety, fibromyalgia, depression, or simply a recommendation to reduce your stress — this post is for you.
Ehlers-Danlos Syndrome, or EDS, is one of the most chronically underdiagnosed conditions in women’s healthcare. It affects connective tissue throughout the entire body, it is hereditary, and it touches nearly every system — joints, skin, blood vessels, the gut, the autonomic nervous system, and more. It is also, by a wide margin, a condition that affects women far more than men. Over 70% of individuals diagnosed with EDS are female. At the Mayo Clinic’s EDS specialty clinic in Florida, 90.6% of patients with hypermobile EDS were women, with a female-to-male ratio of nearly 10 to 1.
And yet women with EDS wait an average of 10 to 12 years for a correct diagnosis. A 2023 study found that individuals with hypermobile EDS receive an average of 10 misdiagnoses before anyone gets it right. Up to 56% of EDS patients receive a misdiagnosis at some point, and 70% undergo inappropriate treatments in the meantime. In some cases, the delay between first symptoms and diagnosis stretches as long as 28 years.
Those are not just statistics. Behind each one is a woman who was told she was exaggerating, or anxious, or simply too sensitive — while her body was quietly dealing with a real, genetic, lifelong connective tissue disorder that nobody thought to look for.
The first reason EDS is so often missed in women comes down to the biology of the condition itself. Estrogen plays a complex role in connective tissue health. Estradiol receptors — proteins activated by estrogen — are found throughout joints, tendons, skin, and cartilage, and estrogen helps regulate the metabolism of those tissues. This means that the hormonal shifts women experience throughout their lives — at puberty, across the menstrual cycle, during pregnancy, and into perimenopause and menopause — directly influence how EDS symptoms behave. More than 70% of women with hypermobile EDS reported that their symptoms began before puberty, and over half reported that symptoms worsened significantly at puberty, which aligns with the onset of estrogen fluctuations. Research has also shown that joint laxity changes across the menstrual cycle, with ligament instability tracking alongside shifts in progesterone levels during the luteal phase. Over one in three women with EDS report that their pain, fatigue, and joint instability get noticeably worse in the days before their period. Around 61% of women with hypermobile EDS report symptom worsening during menopause, when estrogen levels decline and joint stability can deteriorate further.
What this means clinically is that EDS in women often does not look the same from month to month, or even week to week. Symptoms fluctuate in ways that can seem inconsistent or even fabricated to a provider who is not looking for a pattern. A woman who presents with joint pain in one appointment and then seems more functional at the next is not making things up — she is living with a condition that moves in rhythm with her hormones. That variability, which should be a diagnostic clue, is frequently used instead to dismiss her.
The second reason EDS gets missed is one that extends far beyond EDS itself: systemic gender bias in medicine. Women are roughly 66% more likely to receive a medical misdiagnosis than men. Women presenting with chronic pain are more frequently labeled as overreacting, exaggerating, or experiencing a psychological condition rather than a physical one. Research published in 2023 found that women who experience medical dismissal are at significantly higher risk of developing PTSD, depression, and anxiety — conditions that are then used to retroactively justify the dismissal. It is a closed loop, and it is harmful. In healthcare settings, when a provider cannot immediately identify the physical cause of a woman’s symptoms, the reflex is too often to attribute those symptoms to mental health rather than to continue investigating. For women with EDS, whose symptoms are wide-ranging, often invisible on standard imaging, and easy to mistake for other things, this reflex is particularly damaging.
The symptoms that tend to get women with EDS redirected to psychiatry rather than physical investigation include chronic widespread pain, fatigue that does not resolve with rest, brain fog, and anxiety — all of which are common, legitimate, physical manifestations of EDS and its associated conditions, particularly POTS and dysautonomia. The anxiety is real. The fatigue is real. But they are symptoms of a connective tissue disorder, not explanations for it. Treating a woman’s EDS-related anxiety with psychiatric medications while her underlying connective tissue disorder goes unaddressed does not help her. It delays the care she actually needs.
There are also specific gynecological manifestations of EDS in women that are almost never connected to the broader diagnosis, even when they should be. Between 33% and 76% of women with EDS report heavy menstrual bleeding, and between 72% and 93% report painful periods — rates that are dramatically higher than in the general population. Connective tissue abnormality and vascular fragility in pelvic structures are thought to contribute to both. Pelvic organ prolapse is more common in women with EDS. Chronic pelvic pain, pain with intercourse, and vulvar pain are reported at elevated rates. Pregnancy in women with EDS can be particularly challenging, with increased strain on joints and the pelvis leading to more severe back and joint pain, and with connective tissue fragility creating additional risks during delivery and the postpartum period. Taken individually, any one of these issues might be managed as a standalone complaint. Seen together, in the context of joint hypermobility, unusual skin, and chronic widespread pain, they form a recognizable pattern — but only if someone is looking for it.
So what should women with suspected EDS actually do? The most important first step is tracking and documenting symptoms in a way that shows the full picture rather than isolated complaints. Because EDS is a multisystem condition, the pattern across systems matters as much as any single symptom. Writing down joint pain, fatigue, GI issues, menstrual symptoms, skin changes, and cognitive symptoms together — noting when they worsen and what seems to trigger flares — gives a provider far more to work with than presenting each complaint in isolation during a ten-minute appointment. If you know that symptoms shift with your menstrual cycle, document that specifically. It is clinical information, not a personal observation.
It also matters who you see. Primary care is often the most important starting point, not because primary care replaces specialist care, but because your primary care provider is best positioned to see your whole health picture and make the right referrals. A provider who understands EDS — and who understands the diagnostic history of the condition in women specifically — can evaluate your symptom pattern, refer you to a geneticist or rheumatologist who specializes in connective tissue disorders, and advocate for you across a care team in a way that fragments of specialist care cannot. If you have been dismissed in the past, finding a provider who takes a thorough history and does not default to psychiatric attribution for unexplained symptoms is genuinely important. You deserve that.
If you have a family history of joint problems, unusual bruising, skin that scars oddly, chronic fatigue, or a relative who was eventually diagnosed with EDS or a related connective tissue disorder, mention it explicitly. EDS is hereditary, and family history is a meaningful diagnostic clue. Sharing it directly gives your provider context that can shorten the diagnostic path significantly.
At Thunderbird Family Medicine, Dr. Scott Marquard has worked with EDS patients who came in after years of being dismissed, mis-labeled, and inappropriately treated. We understand the diagnostic complexity of EDS in women. We understand why the symptoms fluctuate and why that fluctuation has historically been used against patients rather than for them. And we are not going to tell you it is anxiety and send you home.
If you recognize yourself in what you have read here — if you have been flexible your whole life, if your joints hurt more than they should, if your periods are brutal, if you are exhausted in ways that sleep does not fix, if you have a drawer full of diagnoses that have never quite fit — please come in and talk to us. You do not need a perfect diagnostic package to show up. You just need a provider who will listen and look at the whole picture. That is what we are here to do.
Schedule an appointment with Dr. Marquard at Thunderbird Family Medicine and let’s find out what is actually going on.
This post is for educational purposes only and does not constitute medical advice or a diagnosis. If you believe you may have EDS or a related connective tissue disorder, please speak with a qualified healthcare provider.