“I've been in pain on and off for over 15 years and no diagnosis!”
A MyEndometriosisTeam member
Seeking an endometriosis diagnosis is never easy. Many women on MyEndometriosisTeam endure years of pain without knowing why it’s happening or that treatment is available. Sometimes women don’t speak up about their pain, but too often women who do talk to their doctors get dismissive answers. Members have been told the pain is in their head or that they’re exaggerating.
“I have always had horrible periods,” a MyEndometriosisTeam member wrote about seeking a diagnosis. “In high school, the doctor told my guardian I was making this up to get on birth control.”
In some cases, women with endometriosis go years without getting satisfactory answers from their doctors, leaving them without proper treatment and often without hope.
The MyEndometriosisTeam member accused of “making up” her pain in high school had a more recent negative experience with a gynecologist. “She says she doesn’t think I have endo. She said I probably just ‘bad periods’ and recommended I drink menstrual herbal tea.” The experience left her feeling “lost and helpless.”
So many MyEndometriosisTeam members know what it’s like to leave a doctor’s office without answers. “I've had doctors dismiss my pain too, saying it's just stress,” one member responded.
MyEndometriosisTeam members encourage each other to be their own advocates and find doctors with endometriosis expertise. “I went to nine doctors who never mentioned endo, but I had a feeling that I had it,” a member shared. “I went to doctor number 10, an endo specialist. At the first visit I set a laparoscopy date. And it was endo.”
Another member had a similar experience when she found a new doctor. “I went to an endometriosis specialist yesterday,” the member wrote. “She went over the results of the MRI and told me I have stage 4 endo and a few small fibroids. I couldn't believe it, especially after another gynecologist dismissed me.”
Members also recommend doing your own research and bringing books or articles to appointments. One MyEndometriosisTeam member plans to bring The Endo Patient’s Survival Guide to her next doctor’s visit. “The book made me cry with validation and feel exponentially more confident in discussing endometriosis,” she wrote.
On average, it can take a woman a decade of pain and other symptoms before she receives a correct endometriosis diagnosis. For some women on MyEndometriosisTeam, it takes even longer - but many women are able to find answers by summoning their own strength and finding support from their fellow members.
On MyEndometriosisTeam, the social network and online support group for those living with endometriosis, members talk about a range of personal experiences and struggles. Seeking a diagnosis is one of the most discussed topics.
Here are some question-and-answer threads about diagnosis and doctors:
Haven't had an official diagnosis. I’m kind of stuck with doctors after them saying it was highly possible. Next step/ suggestions?
Here are some conversations about diagnosis and doctors:
“I am about to start seeing new doctors and I’m bringing this book with me.”
Can you relate? Have you had negative experiences with doctors on the journey to diagnosis? Share your experiences on MyEndometriosisTeam or in the comments below.