Endometriosis affects around one in ten women of reproductive age [1], yet many wait years for a diagnosis. My colleagues and I studied how long that wait is, and why, among women treated at a UK specialist endometriosis centre [2].
What we found
One hundred and one women completed a detailed questionnaire about their symptoms and their experiences of seeking help. Half of them had waited eight years or more from the start of their symptoms to a diagnosis of endometriosis, and a quarter had waited fourteen years or more [2].
- Half of the women were still waiting at 8 years
- A quarter were still waiting at 14 years
Several things were linked to a longer delay. The earlier the symptoms began, the longer the wait tended to be, and period cramps in the teenage years were themselves linked to a longer delay. Women whose pain had been treated as normal waited longer, as did women who felt that health professionals had not taken their symptoms seriously. Women with deep endometriosis between the vagina and the bowel (rectovaginal endometriosis) also waited longer [2].
The study asked women at a single centre to look back on their experience, so it cannot tell us everything about the experience across the UK. Its findings are in keeping with a study across ten countries, which found an average delay of about seven years, most of it before a referral to a specialist [3], and they suggest the delay has not improved much over the past two decades [2].
Why the delay does harm
Endometriosis affects quality of life and work. In the ten-country study, each affected woman lost on average about eleven hours of work a week, mostly through being less effective while at work [3]. A long delay means years of symptoms without an explanation, and years without the treatments that could have eased them.
What can help
If you think you may have endometriosis, keep a diary of your symptoms over a few months: when the pain occurs, how severe it is, and whether it affects your bowel or bladder, sex or daily life. It helps your doctor see the pattern, and NICE (the National Institute for Health and Care Excellence) suggests it [4]. Be specific about the effect on your life. “I miss two days of work every month” is easier to act on than “my periods are bad”.
Ask directly whether endometriosis could be the cause. NICE says that doctors should suspect endometriosis in women and girls, including those aged 17 and under, with long-standing pelvic pain, period pain that affects daily life, deep pain during or after sex, painful bowel movements around a period, or pain or blood when passing urine around a period [4].
A normal scan does not rule it out. NICE says that endometriosis should not be excluded because an examination and a scan are normal, and that a referral may still be needed [4]. The endometriosis page explains what a scan can and cannot show.
If you are still waiting for an answer
If you have had pelvic pain or painful periods for years without a clear answer, you do not have to keep waiting. I lead the Endometriosis Centre at Epsom and St Helier University Hospitals, accredited by the British Society for Gynaecological Endoscopy (BSGE), and I see private patients in Wimbledon, Sutton, Ashtead and Epsom. At Parkside Hospital in Wimbledon and the CRP Clinic in Epsom I can scan you during the consultation.
We go through your symptoms together, I explain what I find and every reasonable option, we decide together what to do next, and you receive a detailed letter swiftly after your consultation. Book an appointment, or contact my practice manager, Helen, who can also send you a secure link to upload any scans or letters beforehand.