Symptoms of endometriosis

Symptoms of endometriosis

Endometriosis presents very differently in different women - no two women have exactly the same symptoms. Some suffer severe pain with minimal lesions, while others with advanced disease have almost no complaints. Symptoms are frequently overlooked or mistaken for other conditions - the average time from first symptoms to diagnosis is 7 to 10 years.

The World Endometriosis Society (WES) emphasises that endometriosis affects physical, mental and social wellbeing and can significantly reduce workplace productivity and quality of life. If symptoms are limiting your work, school or daily life - you are not overreacting. You deserve examination and an explanation of your symptoms.

Pain - the most common symptom

Pelvic pain is the most common symptom of endometriosis. It can occur in various situations and phases of the cycle:

Painful periods

Severe menstrual pain (dysmenorrhoea) is the best-known symptom. The key distinction: pain that forces you to take time off work, lie down, or stop functioning - is not normal. Pain that disrupts your daily life always deserves medical investigation.

Endometriotic pain is typically described as burning, stabbing, heavy or crushing, often spreading to the lower back or thighs. It may begin several days before menstruation and persist after it ends.

Chronic pelvic pain

Pain is not limited to menstruation. Many women with endometriosis suffer from chronic daily pain - a dull pressure, feeling of fullness or dragging sensation in the lower abdomen that comes and goes without obvious cause.

Ovulation pain

Mid-cycle pain at the time of ovulation (Mittelschmerz) is more pronounced and intense in women with endometriosis than the usual mild pulling sensation. It may last several hours or an entire day.

Lower back pain

A less commonly mentioned but very frequent symptom. Lower back pain, particularly during menstruation, may be caused by lesions in the area of the uterosacral ligaments or rectovaginal septum.

Pain during intercourse

Pain during or after sexual intercourse (dyspareunia), particularly with deep penetration, affects a large proportion of women with endometriosis. It is caused by lesions in the area of the rectovaginal septum or uterosacral ligaments, which are stressed during intercourse.

This pain is frequently concealed by women out of embarrassment or fear. Yet it is one of the most important symptoms that every gynaecologist should ask about.

Bowel symptoms

Endometriosis can affect the bowel - most commonly in cases of deep endometriosis involving the rectovaginal septum or rectum. Bowel symptoms often worsen in relation to the menstrual cycle, and this cyclical pattern can help distinguish endometriosis from irritable bowel syndrome or other bowel conditions.

Possible bowel symptoms include:

• Diarrhoea or constipation - especially before or during menstruation.
• Pain during bowel movements - stabbing or cramping pain during defecation, typically worse during the period.
• Blood in stool - a less common symptom that may be present with deep bowel involvement, but always requires investigation.
• Bloating and feeling of fullness - pronounced, recurring bloating, especially before and during menstruation.
• Nausea - may accompany severe pain or bowel symptoms.

Bowel manifestations of endometriosis are often mistaken for irritable bowel syndrome. Women may spend years receiving treatment for bowel complaints while the true cause remains undetected. A key diagnostic clue is the repeated worsening of symptoms in relation to menstruation.

Bladder symptoms

Endometriosis can also affect the bladder or ureters. Symptoms typically worsen during menstruation:

• pain or burning during urination
• frequent urge to urinate
• blood in urine (less common, with bladder wall involvement)

Heavy bleeding

Heavy or prolonged menstrual bleeding (menorrhagia) is a common symptom - particularly when adenomyosis is also present. Heavy bleeding leads to anaemia, which further worsens fatigue.

Irregular bleeding or spotting outside menstruation may also be part of the picture.

Fatigue

Chronic fatigue is one of the most underestimated symptoms of endometriosis. This is not ordinary tiredness - it is deep exhaustion that does not resolve with sleep and significantly limits daily functioning.

The causes are complex: chronic inflammation continuously activates the immune system, heavy bleeding leads to anaemia, chronic pain disrupts sleep, and the psychological burden of the disease is exhausting in itself.

Pain from adhesions

Chronic inflammation caused by endometriosis leads to the formation of adhesions - bands of scar tissue that connect organs. Adhesion pain differs in character from endometriosis pain itself:

• Adhesion pain: stabbing, sharp, pulling, intense, sometimes nauseating - linked to movement or position
• Endometriosis pain: burning, dull, heavy, crushing - linked to the menstrual cycle

Fertility problems

Difficulty conceiving is well documented in endometriosis - approximately 30-40% of women with endometriosis experience varying degrees of reduced fertility. Endometriosis is one of the most common causes of infertility in women. Yet many women with endometriosis conceive naturally or with treatment.

Psychological impact

Endometriosis is not only a physical disease. Chronic pain, diagnostic uncertainty, fertility problems and the impact on relationships and career have a serious psychological impact. Depression, anxiety and feelings of isolation are significantly more common in women with endometriosis than in the general population.

Psychological symptoms are not "just in your head" - they are a direct consequence of chronic illness and deserve the same attention as physical symptoms.

Less common symptoms

In rarer cases, when lesions occur outside the pelvic area:

• shoulder or chest pain linked to menstruation (diaphragm involvement)
• coughing up blood during menstruation (pulmonary endometriosis)
• painful surgical scars that swell and hurt during menstruation

When to seek help?

See a doctor if:

• menstrual pain prevents you from functioning normally - going to work, school or seeing friends
• you suffer from chronic pelvic pain outside your period
• you have pain during sexual intercourse
• you experience recurring bowel or bladder symptoms linked to your cycle
• you have been unable to conceive for more than 6 months
• you suffer from pronounced, unexplained fatigue

Don't be afraid to name your symptoms exactly as you experience them - and persist. Much of the 7-10 year diagnostic delay occurs because women minimise their symptoms or are not believed. Your pain is real and deserves an answer.

Information on endometriosis symptoms: endometriosis.org - Symptoms and World Endometriosis Society - Symptoms.