Illustration: Emma Günther
Why is endometriosis challenging to diagnose?
People with endometriosis share their experiences and advice about treatment
Top things to know:
Endometriosis is a condition in which endometrial tissue grows outside of the uterus, causing painful periods, infertility, and other symptoms.
Scientists still don’t know what causes endometriosis or how to cure it.
Endometriosis can be difficult to diagnose. As a result, those with endometriosis may wait many years for a diagnosis.
Endometriosis is a long-term condition in which endometrial tissue that lines the uterus grows in other parts of the pelvic area (1). This can cause symptoms like painful periods, pain during sex, and infertility. Because the disease is difficult to diagnose, it can take many years to get a diagnosis: one Brazilian study showed an average time of seven years to diagnosis (2), and other studies of populations in the UK and USA have found diagnostic delays of 8 and 12 years, respectively (3).
We asked people who use Clue with endometriosis about their experiences living with the disease. Here are their responses, edited for clarity.
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People’s endometriosis symptoms are commonly dismissed
Waiting for a diagnosis can be frustrating, especially if you don’t feel that your symptoms and concerns are being taken seriously by your doctor and your friends and family. Many people who use Clue with endometriosis felt that their concerns about their symptoms had been dismissed:
“It took me from 8 to 25 years old to find someone who believed my pain and that it wasn’t all in my head.”
“After waiting nearly 15 years, I was diagnosed with endometriosis. I already knew it deep down, but to hear the diagnosis after waking up in the recovery room made me cry tears of relief from the validation.”
“I was repeatedly dismissed and told it was normal for women to suffer heavy, painful periods, rectal pain, and painful intercourse.”
Receiving a diagnosis is often a challenging journey
Getting a diagnosis of endometriosis can be difficult for many reasons. First, endometriosis symptoms are variable and far-ranging, so healthcare workers may not be able to diagnose it easily (1). In addition, the gold standard for diagnosing endometriosis is by performing a keyhole surgery into the abdomen known as a laparoscopy (4). This surgery can be expensive, depending on where you are in the world, but it is the most accurate way to diagnose endometriosis (5).
When people who use Clue with endometriosis were asked about what they wished they'd known earlier, on the journey to a diagnosis, they emphasized advocating for oneself and one's symptoms:
“I wish I had known how integral it is to connect with my own body, that severe period pain is not normal.”
“Anyone down-playing your concerns does not have your best interest in mind. Believe your body when it tells you something.”
“You know your body best, so if you feel something isn’t right, keep pushing for people to listen.”
Tracking your cycle with Clue can help
If you have menstrual or pelvic pain that is interfering with your daily life, talk to your healthcare provider (1). If you think you may have endometriosis, track your symptoms in the Clue app, and take the data to your healthcare provider.
Here's how some people who use Clue with endometriosis said they use Clue to manage their condition and help advocate for care:
“Bringing a period tracking app to the appointment may help make you more believable and therefore get help sooner.”
“[With Clue,] I am more aware of what’s happening in my body and I have a lot of data about my condition, which gives me a certain peace of mind. I know what’s going on, I can guess what’s coming, and even though I don’t know the solution, I can at least better manage this.”
“I use Clue to plan for the next cycle. My life revolves around heavy bleeding and pain. Also, I use it to relay any changes in my cycle to my gynecologist.”
“I [use Clue] to plan when I need time off as I can predict my pain levels.”
“[Clue can help] to plan around when my symptoms are likely to flare.”
In the Clue app, you can track different types of pain, pain levels, and other symptoms and cycle-related experiences. If you’re subscribed to Clue Plus, you can use the Analysis Tab to gain additional insight into your cycle statistics.
Advances in advocacy, research, and education will continue to bridge the gap in diagnosing endometriosis. If you’re looking for additional support, there are support organizations that specialize in endometriosis, like the Endometriosis Foundation of America or Endometriosis UK.
Article originally published on April 09, 2018.
