Endometriosis: the real struggle.

Article published at: Agora London Mar 1, 2024
Endometriosis: the real struggle.
All Hormone Health

March is dedicated to Endometriosis Awareness. The goal is to focus on the common symptoms of endometriosis aiming to enhance public awareness and understanding of the condition, ultimately promoting quicker diagnosis and improved access to care.

What is endometriosis?

Endometriosis is a common oestrogen dependent and progesterone resistant inflammatory disease.

Its cause is unknown, and it involves the growth of endometrial cells outside the uterus. Essentially, cells resembling those in the uterus are discovered in other parts of the body. These cells can affect various areas, including the lining of the pelvis, ovaries, the region between the upper vagina and rectum, as well as the bladder and bowel.

Every month, these cells outside the uterus go through a cycle of building up, breaking down, and bleeding, similar to the cells inside the womb. However, unlike the uterine cells that are expelled during a period, this blood has no way to exit the body.

The World Health Organization states that Endometriosis impacts 10% (190 million) of women and girls of reproductive age globally. In the UK, approximately 1.5 million individuals assigned female at birth are currently coping with this condition, making it the second most common gynaecological condition in the country. Alarmingly, various international studies have reported an unsettlingly prolonged period, ranging from 6 to 12 years, between the emergence of symptoms and the attainment of a conclusive diagnosis.

The extended time it takes to arrive at a clear diagnosis for endometriosis is primarily because its symptoms overlap with various other conditions such as autoimmune diseases, cancer, irritable bowel syndrome (IBS), and musculoskeletal abnormalities. Another significant challenge in promptly diagnosing and effectively managing endometriosis is the absence of a straightforward non-invasive diagnostic test. Consequently, finding a clinical tool for diagnosing endometriosis has become a high priority research goal. However, a major issue in many countries appears to be that the general public and many healthcare providers lack awareness that persistent and life-altering pelvic pain is not normal. This leads to the normalisation and stigmatisation of symptoms, resulting in significant delays in diagnosis. One recent study found that women with endometriosis “often encountered the attitude that they exaggerated or imagined their symptoms or had low pain thresholds” and women were told their menstrual pain was normal.


The way endometriosis manifests varies, as some women endure severe symptoms while others remain symptom-free. This chronic and painful condition causes significant health challenges, disrupting normal activities such as work and resulting in an average weekly work loss of 10.8 hours. This, in turn, diminishes the overall quality of life for women affected by endometriosis and their families. Seeking medical attention is often prompted by common symptoms like chronic pelvic pain and infertility associated with this condition.

Hidden Impacts of Endometriosis

Endometriosis has significant social, public health and economic implications. Its impact on quality of life stems from intense pain, fatigue, depression, anxiety, and infertility. For some with endometriosis, the excruciating pain becomes a barrier to attending work or school. Painful intercourse resulting from endometriosis may disrupt or cause avoidance of sexual activity, impacting on the sexual health of those affected and their partners.

Recent studies on women with endometriosis revealed that over two-thirds (68%) experienced mild or high psychological stress. The authors suggested that interdisciplinary treatment should encompass not only pain management and addressing potential infertility but also provide mental health support. Adding to the psychological distress is the difficulty many women encounter in reaching a timely diagnosis. Early diagnosis is crucial for supporting patients and preventing further mental health stress, as well as minimising prolonged suffering.

Here is what our experts have to say:

 As Dr. Doyinsola Kuku explains: The prolonged diagnostic process for endometriosis can significantly impact the mental health of women experiencing it. The symptoms not only have a notable physical, sexual, and social impact but also contribute to substantial emotional distress. The extended period of uncertainty and the challenges associated with managing the condition can exacerbate mental health concerns, underscoring the importance of timely diagnosis and support.

Psychotherapist and Counsellor Stephanie Queen highlighted the fact that ‘women diagnosed with endometriosis statistically are more likely to experience anxiety or depression’. The struggle to reach a diagnosis often ‘fosters a sense of mistrust towards the medical system, as women are repeatedly brushed off and told that their symptoms are 'normal', leading to internalised shame and feelings of brokenness’.

She also emphasises  the impact that pain during sex, caused by endometriosis, can have on individuals:  ‘For many, the pain during intercourse becomes a silent burden, accompanied by the fear of disappointing partners. At its worst, it can feel like an attack on an individual's sexual self’. 

Stephanie believes that ‘the collective silence on this condition perpetuates feelings of isolation for those suffering’ emphasising the importance of breaking the cycle through open dialogue.

Integrative Psychotherapist  Lorraine Collins:

‘One of the primary symptoms of endometriosis is chronic pelvic pain, which can severely impact daily functioning and quality of life. Chronic pain is known to be a significant risk factor for the development of psychological disorders, including depression and anxiety. The prolonged diagnostic process for endometriosis can significantly impact the mental health of women, particularly when they lack adequate psychological and medical information and support’.

In conclusion, the significance of early diagnosis in endometriosis cannot be overstated. The condition's diverse symptoms, coupled with a lack of awareness and diagnostic tools, often lead to prolonged suffering and substantial mental health challenges for affected individuals. Addressing these issues requires a multifaceted approach that not only focuses on medical interventions for pain and infertility but also prioritises mental health support. Timely diagnosis not only alleviates physical symptoms but also empowers individuals, paving the way for a better quality of life and overall well-being. Increased awareness, improved access to healthcare, and ongoing research efforts are imperative in tackling the complexities of endometriosis and ensuring a more favourable outcome for those affected.

Sources: https://www.who.int/news-room/fact-sheets/detail/endometriosis

Diagnosis of Endometriosis Victoria Turpin, Anna Leonova, Sanjay K. Agarwal and Warren G. Foster

Benefits of Surgical Intervention in Women with Endometriosis-Related Infertility Popov Alexander, Koval Alexey, Fedorov Anton, Tyurina Svetlana, Fedotova Irina and Khabibullakh Tamana

Journal of endometriosis and pelvic pain disorders , Thousand Oaks

Endometriosis: the experts’ guide to treat, manage and live well with your symptoms , Professor A. Horne and Carol Pearson

Endometriosis: Basic Concepts and Current Research Trends, K. Chaudhury, B. Chakravarty.

Endometriosis Research , A. S. Lagana and V.L. La Rosa, Basel