It takes on average 7.5 years for a woman to be diagnosed with endometriosis; here’s how to help speed that up
Many women who have been ultimately diagnosed with endometriosis say that, deep down, they knew for years that something wasn’t right, but they didn’t know how to explain what was wrong. “Since I was a teenager, periods were really difficult for me, but I was told everyone experiences pain,” Catherine Nestor, co-vice chair of the Royal College of Obstetricians and Gynaecologists (RCOG) Women’s Network, says. “At that time, no one said it really shouldn’t be that bad. How could I admit I had a problem when no one else was concerned? But looking back, I’m not sure why fainting spells, cold sweats and being doubled up in pain didn’t raise alarm bells.”
Similarly, Laura Owen-Wright, 32, suffered from the symptoms of endometriosis for over a decade. “I look back as a teenager and I knew that something was wrong,” she says. “I’ve always felt that there was a big jigsaw piece missing on my life.”
It also took Amee Leigh Atkins, 25, eight years to be diagnosed, having been previously misdiagnosed with pelvic inflammatory pain and PCOS. “I’ve learned to listen to my body on every base level that I can, and to check in and see if there’s any little signs, any triggers. My piece of advice would be to track your symptoms, so you can notice any patterns.”
Track your symptoms
The first step to getting diagnosed starts with logging your own symptoms. If you have painful periods, irregular bleeding, pelvic pain or discomfort during or after sex, keep a note of when and how severe the symptoms are, and take your findings to your doctor.
Family history
Check with other female relatives if they have suffered similar symptoms: endometriosis is commonly seen in families.
See a doctor
If you are concerned about your own symptoms, see a doctor. “They can then refer you to a gynaecologist,” Professor Nick Raine-Fenning, a consultant gynaecologist for RCOG says. He agrees that it is helpful for doctors if you have written down your symptoms.
Ask for tests
Endometriosis can be investigated through blood tests, pelvic examination or ultrasound but the gold standard for diagnosis, is laparoscopy, which involves a tiny camera being inserted into your abdomen, then taking a biopsy. This determines the amount of endometriosis you have and where it is located.
“Endometriosis can be difficult to diagnose because every woman experiences the condition differently, and because symptoms can be similar to other illnesses, such as irritable bowel syndrome or pelvic inflammatory disease,” says Professor Raine-Fenning. “On average, it takes 7.5 years for a woman to be diagnosed with endometriosis. More must be done to recognise and understand the symptoms of endometriosis and to encourage women to voice concerns about their health.
“No woman should suffer in silence.”
Read more from Moody Month’s endometriosis mini-series:
Endometriosis: The medical options
Endometriosis: Lifestyle factors that can help manage symptoms
Daily wellness for women, tailored to your cycle.
