Endometriosis: The Hidden Disease Millions of Women Live With Undiagnosed
Endometriosis: The Hidden Disease That Affects Millions of Women
Endometriosis is one of the most common and misunderstood diseases affecting women, an estimated 1 in 10, and one of the most frequently missed. On average, a woman with endometriosis waits 8 to 10 years for a diagnosis, and sees around eight doctors along the way. For a decade, her pain is often not believed. Recognising the endometriosis symptoms early is the single thing that could change that story, which is why it is worth understanding what they actually are.
On a recent episode of the Ask Syd podcast, filmed at our Beverly Hills flagship, we spoke with Dr. Iris Kerin Orbuch about why this disease hides for so long, and what every woman should know. She is a globally recognised endometriosis surgeon and author of Beating Endo.
What Endometriosis Actually Is
Most people think of endometriosis as a menstrual problem, something confined to the pelvis and the reproductive organs. As Dr. Orbuch explains, that is far from the truth. It is a systemic inflammatory disease, in which cells similar to the lining of the uterus are found elsewhere in the body, releasing inflammatory signals that inflict pain in multiple organs.
That is why it can cause such a wide range of problems, and why it is so often mistaken for something else.
The Symptoms Most Often Missed
The signs of endometriosis reach well beyond painful periods. According to Dr. Orbuch, they commonly include:
- Painful periods, painful sex, and heavy bleeding
- Gut issues – bloating, constipation, diarrhoea, often labelled as IBS
- Urinary urgency or frequency, with urine cultures that come back negative
- Persistent fatigue and exhaustion
- Fertility difficulties – endometriosis is linked to around 40% of unexplained infertility
The pattern is telling. A woman may see a gastroenterologist for the gut symptoms, a gynaecologist for the pelvic pain, a urologist for the bladder issues, and report her fatigue to yet another doctor, while no one steps back to ask the whole-body question that connects them. That fragmentation is a large part of why the disease stays hidden.
Why Diagnosis Takes So Long
Diagnosis of endometriosis can often take upwards of 8-10 years. Part of the delay is that imaging will usually come back normal, and the only true way to diagnose in a traditional office is through surgery. As Dr. Orbuch notes, a standard ultrasound or scan can come back clear even when endometriosis is present, and many patients are told that they do not have it. There is no simple blood test that reliably detects it, and a definitive diagnosis is typically confirmed at the time of surgery, which only occurs after the patient has exhausted all other efforts.
This is why endometriosis diagnosis depends so heavily on someone taking a careful history and asking the right questions – rather than relying on a scan to declare the all-clear. A family history is one of the strongest clues: if a close relative has endometriosis, the likelihood in a symptomatic patient rises sharply.
It Can Start Earlier Than People Think
One of the most striking points Dr. Orbuch raises is that the signs often begin in childhood or the teenage years – long before anyone connects them to endometriosis. The child with the recurring “tummy ache,” the teenager whose period pain is dismissed as normal: these can be early symptoms. Because a mother or sister may have normalised the same pain, it is often not questioned at all.
The takeaway is to pay attention even in early years, particularly where symptoms cluster or run in the family.
Endometriosis Is Not PCOS
A common source of confusion is the difference between endometriosis and PCOS. As Dr. Orbuch puts it: PCOS alone does not cause pain. Polycystic ovary syndrome is a hormonal and metabolic condition – irregular cycles, insulin resistance, and related features – whereas pain is a hallmark of endometriosis. When pelvic pain is labelled as PCOS, the real cause can be missed for years. Getting the distinction right matters, because it changes everything about treatment and prognosis.
Why the Right Questions Matter
The thread running through the entire conversation is that endometriosis is rarely caught by a test. It is caught by someone with the time to listen, join the dots across the whole body, and ask questions a fifteen-minute appointment does not allow.
This is where a primary-care setting built for depth can make a genuine difference. Both at Iris Wings and Sydenham, the model is designed around exactly this kind of whole-picture thinking: taking the time to record a full history, attention to gut health, genes, hormones, family patterns, and the willingness to connect symptoms that are too often treated in isolation. Recognising a pattern early does not replace specialist care, but it can be the moment that shortens a decade-long search to a far quicker one.
If the symptoms above sound familiar, especially if they have been dismissed before – they are worth taking seriously, and worth a conversation with a physician who has the time to hear the whole story.
Frequently Asked Questions
What are the most common symptoms of endometriosis?
Beyond painful periods, common symptoms include painful sex, heavy bleeding, bloating, and gut issues often labelled as IBS, urinary urgency with negative cultures, persistent fatigue, and fertility difficulties. Because these span multiple body systems, they are frequently mistaken for other conditions.
Why does endometriosis take so long to diagnose?
On average, it takes 8 to 10 years and around eight doctors. Imaging is often normal even when endometriosis is present; there is no reliable simple blood test, and symptoms are spread across specialties – so no single clinician connects them. Diagnosis depends heavily on a careful history and the right questions.
Can you have endometriosis with a normal ultrasound?
Yes. A standard ultrasound or scan can come back normal even when endometriosis is present. Being told your imaging is clear does not rule it out, which is why symptom history and expert evaluation matter so much.
What is the difference between endometriosis and PCOS?
PCOS is a hormonal and metabolic condition – irregular cycles, insulin resistance – and does not typically cause pain. Endometriosis characteristically does cause pain. Pelvic pain labelled as PCOS may in fact be endometriosis, so the distinction is important.
Can endometriosis start in childhood or the teenage years?
Yes. Signs can appear well before diagnosis – recurring stomach aches in childhood or period pain dismissed as normal in the teens can be early symptoms, particularly where there is a family history of endometriosis or related conditions.
Does endometriosis affect fertility?
It can. Endometriosis is associated with roughly 40% of cases of unexplained infertility. Many people are unaware they have it until fertility difficulties prompt investigation.
