# 11 | Endometriosis: What Your Body Has Been Trying to Tell You
Every March, the world turns yellow and black, the colours of endometriosis awareness. But for the estimated 190 million people living with this condition globally, awareness isn't just a ribbon or a social media post. It is years of being told that their pain is "normal". It is consultations that lead nowhere, diagnoses deferred, and quality of life quietly eroding while waiting for answers that feel impossibly out of reach.
At HER, we believe that understanding your body is one of the most crucial tools you have for your health. So, this month, we are going deep: what endometriosis actually is, what it does, why it so often goes undiagnosed and what you can do if you think it might be affecting you.
What Is Endometriosis?
Endometriosis is a chronic, inflammatory condition in which tissue similar to the endometrium - the lining of the uterus - grows outside the uterus. These lesions most commonly develop on the ovaries, fallopian tubes, and the tissues lining the pelvis, though they can also appear on the bowel, bladder, and in rare cases, more distant sites.
Unlike the endometrial lining, which sheds with each menstrual cycle, this misplaced tissue has nowhere to go. It responds to the same hormonal signals, thickening, breaking down, but becomes trapped, causing inflammation, scar tissue (adhesions), and ovarian cysts known as endometriomas, sometimes called "chocolate cysts" due to their appearance. The condition is oestrogen-dependent, meaning the fluctuating hormonal environment of the reproductive years both fuels its growth and intensifies its symptoms. This is why symptoms often ease during pregnancy and after menopause, though not always, and not for everyone.
Recognising the Signs
One of the most significant barriers to diagnosis is how widely endometriosis symptoms can vary both between individuals and across a single person's experience over time. Some people experience debilitating pain from adolescence; others are largely asymptomatic until fertility concerns prompt investigation. The condition's symptom profile overlaps considerably with irritable bowel syndrome, pelvic inflammatory disease, and interstitial cystitis, creating a diagnostic maze that too often results in years of misdirection.
Common Symptoms to Know
· Severe, cyclical pelvic pain (dysmenorrhoea)
· Painful intercourse (dyspareunia), during or after
· Chronic pelvic pain outside of menstruation
· Heavy or irregular menstrual bleeding
· Pain when urinating or opening the bowels, particularly during menstruation
· Bloating and digestive discomfort around the cycle
· Profound, poorly-explained fatigue
· Difficulty conceiving (present in approximately 30–50% of cases)
· Lower back or leg pain during the cycle
It's worth naming what is perhaps the single biggest cultural obstacle to earlier diagnosis: the widespread normalisation of period pain. Many people with endometriosis spend years being told their pain is "just bad periods" - by family, by peers, and sometimes by clinicians. The evidence is clear: pain that consistently disrupts daily life, work, or relationships is not a normal feature of menstruation. It is a signal that warrants investigation.
Why Diagnosis Takes So Long
Research consistently shows that women in high-income countries wait between 7 and 9 years for a diagnosis. Historically, a definitive diagnosis has required laparoscopic surgery, invasive, costly, and inaccessible for many, while symptoms overlap considerably with IBS, pelvic inflammatory disease, and other conditions, creating a diagnostic maze. Systemic bias compounds this: studies show women's pain is more likely to be minimised or attributed to psychological causes, and Black women are 50% less likely to receive a diagnosis than white women not because the condition is less prevalent, but due to compounding disparities in access and clinical bias. Updated ESHRE guidelines now acknowledge that a clinical diagnosis can be supported by symptom history and non-invasive imaging, such as transvaginal ultrasound or MRI, without requiring surgery as a first step.
Treatment Options
There is currently no cure, but evidence-based treatments can substantially reduce symptoms and improve quality of life. Hormonal therapies including the combined pill, progestins, the levonorgestrel IUS, and GnRH analogues are, typically, first-line, working by reducing the oestrogen exposure that drives lesion growth. NSAIDs are widely used for acute pain and are most effective when started one to two days before expected onset. Where medication is insufficient, laparoscopic excision surgery - physically removing lesions - is associated with better long-term outcomes than ablation. Lifestyle factors including anti-inflammatory nutrition and pelvic floor physiotherapy play a supportive, if not curative, role.
The Mental Health Dimension
Living with a chronic, often invisible condition takes a real psychological toll. Research shows people with endometriosis experience higher rates of anxiety and depression. In one cohort study, the likelihood of an anxiety diagnosis was nearly twice as high compared to pain-free controls. This is not incidental: chronic pain alters the nervous system over time, and years of dismissal compound the burden further. Acknowledging this is not separate from physical treatment but an essential part of whole-person care.
What You Can Do
If you suspect endometriosis, start by tracking your symptoms across two to three cycles: noting severity, timing, and daily impact. In your appointment, name endometriosis specifically and ask directly whether it could be a factor. If your concerns are dismissed, seeking a second opinion is a legitimate and often necessary act of self-advocacy. Organisations such as Endometriosis UK and the World Endometriosis Society offer clinician directories, peer support, and guidance for navigating the diagnostic pathway.
You do not have to accept pain as your baseline. You deserve care that actually helps.