Women With Endometriosis Are Getting Late Diagnoses & It's Proof We Need To Stop Normalizing Pain
A recent study by the U.K.'s All Parliamentary Group on Women's Health reveals some alarming findings regarding the treatment of women with endometriosis. These patients are not only getting misdiagnosed and diagnosed way too late but also receiving subpar treatment by their doctors. It's another reminder that we not only need better education about women's health issues for both doctors and laypeople but also that we need to stop normalizing pain.
The researchers surveyed over 2,600 women with endometriosis, a condition in which the tissue that normally lines your uterus grows outside of it, resulting in heavy periods, bad menstrual cramps, and debilitating pain during sex. A full forty percent of the women had 10 or more doctor's appointments before even receiving a diagnosis, and many had to rely on independent online research to figure out what was happening. Forty-two percent said their doctors behaved in ways that were disrespectful or compromised their dignity.
What many of the women in the study have in common is that they were told the menstrual pain they experienced as a symptom of the disease was normal. "I suffered from horrendous periods from the age of 14," one woman, Katie, wrote on Instagram. "I visited the doctors so many times but was alI was always told that bad periods were part of 'growing up.'" She got misdiagnosed with everything from Irritable Bowel Syndrome to excessive sit-ups before she finally got an accurate diagnosis upon her tenth doctor's appointment.
Another patient named Amy did not get a diagnosis for five years, even after she ended up quitting her job due to the pain. Believe it or not, that's relatively quick: The average endometriosis patient waits seven and a half years.
Diagnosing endometriosis requires a form of surgery called a laparoscopy, in which a surgeon examines the pelvis with a tiny camera. "GPs face two major challenges here — both identifying condition that has very diverse symptoms and mimics lots of other things," Professor Helen Stokes-Lampard of the Royal College of GPs told the BBC. "Also if we were to refer everybody with symptoms that could possibility be endometriosis, hospitals would be completely swamped and that wouldn't help the hospitals or the patients." Once diagnosed, endometriosis can't be cured, but it can be treated with painkillers, hormonal coils, or surgery.
Given that as many as 10 percent of women of reproductive age suffer from endometriosis, it's pretty shocking that treatment is so behind. Only recently has the disease even become part of public discourse as celebrities like Lena Dunham and Halsey have spoken out about it.
In addition to training medical professionals to identify the condition and treat it with compassion and understanding, we also need to challenge a more widespread cultural idea that says pain is normal for people with uteruses. From menstruation to first-time sex, we're taught that pain just comes with the territory of being female, rather than learning to view physical discomfort as the red flag that it is.
The moral of the story: If you're experiencing pain in the pelvic region, irregular periods, or other symptoms of endometriosis, don't dismiss it, even if your doctor does. Find someone who understands the condition and takes it seriously. As this study shows, that unfortunately may take a little searching.