Endometriosis Awareness Month 2024: What is endometriosis?

March 2024 is Endometriosis Awareness Month. We don’t know exactly how many people are affected by endometriosis, but the WHO estimates that around 10% 1 of women, girls, and people with female reproductive systems live with this painful condition. The real number of those affected may be much higher. 

Endometriosis is a condition where tissue similar to the uterine lining grows outside the uterus. 2

It's most commonly found in the pelvic cavity. Endometrial tissue can grow on the ovaries, behind the uterus, on the fallopian tubes, on the tissues that hold the uterus in place, or on the bowels or bladder. 3

In rare cases, endometriosis can sometimes be found on other organs like the lungs, brain, or skin. 

Endometriosis is a very painful condition that can make normal life very difficult for some women, particularly around the time of their menstrual period. 

The main symptoms of endometriosis are:

• Extremely painful menstrual cramps
• Long-term pain in the lower back or pelvis
• “Deep” pain during or after sex
• Intestinal pain
• Painful urination or bowel movements during the menstrual period
• Bleeding or spotting between periods
• Infertility
• Digestive problems, particularly during the menstrual period

If you have any of these symptoms, you should speak to your healthcare provider. 

There's no cure for endometriosis, but some treatments are available for its symptoms and their effects. There has also been some promising recent news that a drug for endometriosis may soon be in development. 4

• Hormonal birth control for patients who are not trying to get pregnant
• Gonadotropin-releasing hormone (GnRH) agonists can temporarily cause false menopause and manage the growth of endometriosis. Once treatment has stopped and the menstrual cycle returns, patients may have a heightened chance of getting pregnant.
• Surgery can be considered for very severe symptoms or to address fertility issues
• Pain medication can be used for milder symptom management

If you think you may have endometriosis, speak to your healthcare provider and explain your symptoms. To diagnose you, they may: 

• Conduct a pelvic exam
• Run imaging tests like an ultrasound or MRI
• Prescribe hormonal treatments to see how your symptoms respond
• Refer you for laparoscopic surgery where the surgeon will check for endometriosis in your pelvic cavity. 

Diagnosing endometriosis is difficult as the broad set of symptoms could also have other causes. Around the world, it takes, on average, 7 to 9 years to get a diagnosis of endometriosis. 5

There's a large gender data gap in health research. 6 A study conducted in Denmark across 21 years showed that women are diagnosed later than men for more than 700 diseases.

Women’s health has been historically underserved by research. Most research funding is funneled toward conditions where there's a risk of death, such as gynecological cancers.

Existing datasets used for diagnosis undercount and undervalue the health burden of factors like pain. This data also contains huge variations for conditions like endometriosis. 

The WHO estimates that around 10% of women of reproductive age live with endometriosis. The Global Burden of Disease, on the other hand, estimates this figure to be 1-2%. This means that anywhere between 24 million to 190 million women could be affected by endometriosis worldwide.

The quality of health education varies widely around the world. Women who experience conditions like painful periods, endometriosis, polycystic ovary syndrome, or uterine fibroids may not be aware of what is normal and when they should seek medical advice.

At Ada, we believe that good information and education enables better care. If you have access to reliable health insights, you can get to know your body better and make better decisions about your health and well-being.  

We’re trying to help close the data gap in women’s health. You can enter your symptoms in the Ada app, and our modeling will cross-check them against a huge database of symptoms and conditions. 

Endometriosis is #13 on our list of most-suggested conditions for female users of the Ada app. Many users have written to us to share that using Ada helped them shorten their time to an endometriosis diagnosis. 

In January 2023, a 21-year-old user called Hannah shared her story with us: “If it wasn't for this app, I most likely [wouldn’t] know about endometriosis. I found this app out of desperation for answers, and it gave them to me.”

Many patient journeys are long and difficult, especially with hard-to-diagnose conditions like endometriosis. Ada can assist people who want to self-educate and can assess their symptoms to give them a better idea of a possible diagnosis. 

Ada facilitates informed conversations between patients and their healthcare providers and in the best case, speeds up time to diagnosis. Ada can assess conditions like endometriosis within minutes. Start a symptom assessment now. 

Take care of yourself,

Ada