Your guide to
Understanding endometriosis
Endometriosis affects 1 in 10 females, including women, girls, and gender-diverse individuals, yet it remains widely misunderstood. An estimated 190 million people worldwide live with this condition, including 1.5 million in the UK.
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Despite its prevalence, diagnosis takes an average of 8 years and 10 months. During this wait, many endure symptoms without proper support.
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What is it?

Endometriosis is a hormone-responsive condition that can cause chronic inflammation, irritation, and scarring. It happens when tissue - similar to the uterine lining (endometrium) grows in places it shouldn’t, most commonly within the pelvic area. This tissue is most commonly found affecting the lining of the pelvis, the ovaries, fallopian tubes, the bladder or bowel. It appears as shallow patches or deeper, invasive growths (deep infiltrative endometriosis).
Symptoms and Impact
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For some, endometriosis causes minimal disruption, while for others, it can lead to severe, life-altering challenges. It is often associated with intense pelvic pain and, in some cases, infertility. Symptoms may also include pain during bowel or bladder movements, gastrointestinal symptoms such as vomiting or diarrhoea; pain and discomfort during ovulation and sexual intercourse, and fatigue (extreme tiredness). Read more about symptoms.
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Read more about symptoms.
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More Severe Cases
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Over time, scar tissue and adhesions may form, causing the ovaries, bowel, and uterus to stick together, leading to increased pain and additional challenges. Ovarian endometriosis (endometriomas) can also impact ovarian function and, in some cases, contribute to early menopause.
In more severe cases, endometriosis can affect the bladder, bowel, or even the chest, sometimes leading to complications that require advanced treatment, including surgery to relieve symptoms and restore function.​

Beyond the Pelvis
Endometriosis can extend beyond the pelvis, affecting the diaphragm, chest, and abdominal wall, especially after surgeries like C-sections. Though uncommon, these cases may require advanced treatments, including surgery. Rarely, endometriosis appears in the heart or brain, but thoracic endometriosis is a key concern for non-pelvic symptoms.
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This condition is complex and varies greatly. Raising awareness helps support those affected, empowering them with knowledge and compassion.
​​ Adenomyosis
Adenomyosis is a different condition where the lining of the womb (uterus) grows into the muscle in the wall of the womb.
Read more about adenomyosis. ​​​​​
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Treatments
Symptoms can often be managed with a combination of pain relief, anti-inflammatory medications, pelvic floor physiotherapy, dietary and lifestyle changes, and alternative therapies. Hormone treatments may also provide relief. For more severe cases, surgery to remove the endometriosis may be necessary if other options don’t work.
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Read more about treatments.
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Causes​
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The cause of endometriosis is still unknown, and there’s no cure. Theories include retrograde menstruation, genetics, immune dysfunction, gut imbalances, and environmental factors, but none fully explain the condition.
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Endometriosis can appear beyond reproductive organs, adding to its mystery. More research is crucial to uncover its root cause and develop better treatments.
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Read more about causes.​​
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Getting Diagnosed
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Diagnosing endometriosis can be challenging, as there is no single test that can confirm it. Your doctor will start by assessing your symptoms, medical and family history, and ruling out other potential causes. This often includes a physical exam and imaging tests like ultrasounds or MRIs.
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While ultrasounds can detect ovarian cysts (endometriomas) and some signs of endometriosis, they may not always identify smaller or deeply embedded lesions. Similarly, MRIs can provide a more detailed view, especially for deep endometriosis affecting the bowel or bladder, but they cannot definitively confirm or rule out the condition.
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If your symptoms continue, a laparoscopy may be recommended to provide a clearer picture. In the meantime, there are treatment options to help manage your symptoms while awaiting a diagnosis.
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When should I ask for help?
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If you’re experiencing period related pain or pelvic pain outside of your period that is affecting your day-to-day activities like attending school, work or interfering with your social life, or if you have noticed changes around your menstrual cycle, this could be a sign of Endometriosis, or it might be related to something else. At this point it is important to make an appointment and discuss this with your GP.
Some of these symptoms may not have an underlying cause and not everyone who has pain will have Endometriosis. Nonetheless, it is important to determine if there is anything causing them, as well as possible treatments regardless of the cause.
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Because endometriosis is complex, diagnosis and treatment are best handled by a gynaecologist who specialises in the condition, as not all are trained in its management.​​
​​Supporting a loved one with endometriosis
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Supporting a loved one with endometriosis is about offering patience, kindness, and understanding. ​
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Simple gestures like attending medical appointments, helping with daily tasks, or finding support resources, can provide much-needed comfort. Everyone’s experience with endometriosis is different from managing pain and fatigue to facing fertility challenges and emotional struggles therefore, creating a space for open, compassionate conversations, can help your loved one feel seen and supported.​
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Click here for more about supporting a loved one.
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