Do your symptoms actually match endometriosis?

Clinically recognised endometriosis symptoms include: painful periods, chronic pelvic pain, heavy periods, pain during sex (dyspareunia), bowel pain during menstruation, bladder urgency, fatigue, bloating ("endo belly"), lower back pain, nausea, difficulty conceiving, diarrhoea or constipation around your period, pain during urination, blood in urine or stool (in bowel/bladder endometriosis), thigh pain, shoulder tip pain (in rare cases), anxiety and depression, cognitive difficulties ("endo fog"), pain during physical activity, and worsening symptoms over time. Not all women experience all symptoms. The condition is highly variable. (Source: WES consensus guidelines; NICE NG73; Agarwal et al. 2019)

In endometriosis, tissue similar to the uterine lining grows outside the uterus. In adenomyosis, this tissue grows into the muscular wall of the uterus itself. The two conditions frequently co-occur: studies suggest 20-80% of women with endometriosis also have adenomyosis. Both cause painful and heavy periods and chronic pelvic pain. Adenomyosis is more strongly associated with a uniformly enlarged uterus and extremely heavy bleeding. Endometriosis more commonly presents with pain during sex, bowel symptoms, and subfertility. Adenomyosis can often be detected on transvaginal ultrasound; endometriosis typically requires laparoscopy for definitive diagnosis. (Source: ACOG; BMJ reviews)

Bowel endometriosis occurs when endometrial-like tissue implants on or infiltrates the wall of the bowel, most commonly the rectum and rectosigmoid colon. It is present in approximately 5-12% of all women with endometriosis. Symptoms include pain during bowel movements that worsens during menstruation, cyclical diarrhoea or constipation, bloating, rectal bleeding during periods, and a sensation of incomplete evacuation. These symptoms overlap heavily with irritable bowel syndrome, and misdiagnosis as IBS is extremely common. Women with bowel endometriosis typically wait an average of 2 years longer for diagnosis than those with ovarian endometriosis alone. (Source: WES guidelines; Agarwal et al. 2019)

The revised American Society for Reproductive Medicine (rASRM) classification divides endometriosis into four stages based on the location, extent, and depth of implants and the severity of adhesions found during surgery. Stage IV (severe) involves deep implants, large endometriomas (ovarian chocolate cysts), and extensive dense adhesions that may bind organs together. Approximately 33% of surgically diagnosed cases are Stage IV. However, stage does not correlate reliably with symptom severity: a woman with Stage I disease can experience debilitating pain, while some with Stage IV are asymptomatic. The rASRM system was designed to describe surgical findings and predict fertility outcomes, not to measure pain or quality of life. (Source: rASRM classification)

Endometriosis is found in 30 to 50% of women investigated for infertility, making it one of the most common contributing factors. The mechanisms are multiple: endometriomas can damage ovarian tissue and reduce egg reserve, adhesions can distort pelvic anatomy, and the inflammatory environment can impair egg quality and implantation. However, many women with endometriosis conceive naturally, particularly those with Stage I or II disease. Options for those who need assistance include surgical excision, ovarian stimulation with IUI, and IVF. AMH testing can help assess ovarian reserve, which is particularly relevant for women who have had ovarian surgery. (Source: ACOG; ESHRE guidelines)

An endometriosis specialist is a gynaecologist with advanced training and accreditation in surgical management of endometriosis, particularly deep infiltrating disease. In the UK, the British Society for Gynaecological Endoscopy (BSGE) accredits specialist endometriosis centres that meet specific standards for surgical volume and multidisciplinary team composition, including colorectal surgeons, urologists, specialist nurses, pain management, and fertility services. The distinction matters because incomplete surgical excision is a major driver of symptom recurrence. NICE guidelines (NG73) recommend referral to a BSGE centre for suspected deep endometriosis. (Source: NICE NG73; BSGE accreditation criteria)

Endometriosis is oestrogen-dependent, so natural menopause often reduces symptoms as oestrogen declines. However, HRT, particularly oestrogen-only, can reactivate endometriosis deposits. NICE and ACOG guidelines recommend that women with a history of endometriosis who have had a hysterectomy should still be prescribed combined HRT (oestrogen plus progestogen), not oestrogen-only. Tibolone is sometimes used as an alternative with lower reactivation risk. Symptoms that recur after starting HRT, including pelvic pain or cyclical discomfort, warrant investigation. Decisions should involve a gynaecologist familiar with the patient's surgical history. (Source: NICE NG73; ACOG Practice Bulletin 114)

The diagnostic delay averages 7.5 years in the UK and 6.7 to 8.4 years across Western countries, driven primarily by the normalisation of menstrual pain. Research by Ballard et al. found that women whose primary symptom was pain waited a mean of 8.0 years for diagnosis, while those presenting with subfertility waited 4.0 years. To advocate effectively, track your symptoms, pain scores, and impact on daily life over two to three cycles before a GP appointment. Be specific rather than saying your periods are painful: explain that you use 8 ibuprofen per day for 2 to 3 days every cycle and still cannot work. NICE NG73 recommends that GPs consider ultrasound and specialist referral for suspected endometriosis. If your concerns are dismissed, asking for a second opinion or referral to a BSGE-accredited endometriosis centre is a reasonable next step. (Source: Ballard et al. 2006; NICE NG73)