How to track endometriosis symptoms with Clue

Endometriosis is a common condition, in which endometrial-like tissue (tissue similar to the lining of the uterus) grows outside of the uterus and in other parts of the body (1). This can lead to debilitating pain, symptoms, and other complications. It can also lead to chronic pain and can affect fertility (2,3).

Endometriosis is estimated to affect 190 million people worldwide, which represents 10% of women and girls who are of reproductive age (1). Unfortunately, many people live with symptoms and experience a long delay before being diagnosed. In fact, the time from the beginning of symptoms to diagnosis takes about seven to nine years (3,4).

The benefits of tracking

Tracking your experiences can be a powerful tool for helping you get an earlier diagnosis and more productive conversations with your healthcare provider.

One person in the Clue community said this about their experience receiving a diagnosis: 

I first noticed symptoms two and a half years ago, and was diagnosed with endometriosis two years ago. Clue helps me keep track of my very long period and also my pain. It helps me have a better conversation with my doctor because I’m able to look at the app and remember things. —Nicole Hernandez

Early detection and management of endometriosis can slow or reduce progression and reduce the burden of long-term symptoms (1). When you track your experiences with Clue, you can create a detailed record of your symptoms, including their frequency and severity. You can see which symptoms occur at certain times of your cycle. This record can give your healthcare provider information that may help in reaching a diagnosis and in forming a management plan.

Here’s an example of someone in the Clue community who uses Clue to help keep track of their symptoms:

I first noticed endometriosis symptoms when I was ten, seven years ago. I was diagnosed about six months ago. Clue helps me track my periods. —Anonymous Clue community member

Download Clue to track any pain related to the cycle.

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Common symptoms of endometriosis

Some people with endometriosis may have no symptoms, but for those who do, there are a number of common symptoms including (1,2):

• Long-term pelvic pain, often worse before and during the period

• Difficulty becoming pregnant

• Pain during sexual intercourse

• Heavy periods (heavy menstrual bleeding)

• Bloating or nausea

• Fatigue

• Depression or anxiety

• Painful bowel movements and/or urination

What to track

Understanding the background and symptoms of endometriosis can help you understand what might be helpful for you to track. 

With Clue, you have several tracking categories that are useful for anyone who has, or might have, endometriosis. Tracking categories are listed below as ‘essential’ or ‘helpful.’ Essential categories are strongly linked with endometriosis and are likely to be very commonly experienced by someone who has endometriosis. Helpful categories are also linked to endometriosis but may not be experienced by everyone.

Essential to track

• Period (including bleeding levels and spotting)

• Pain (including pain levels: mild, moderate, severe, and excruciating)

Helpful to track

• Energy

• Feelings

• Mind

• Stool

• Digestion, such as bloating and diarrhea

• Sex life

• Urine

• Medications including contraception use

Use our custom tags to add more detailed information about the level and location of pain, appointments you may have, or any additional symptoms.

You may also find it helpful to use the pain analysis feature and data visualization feature within the Analysis Tab of the Clue app. This is available to everyone with Clue Plus and gives you detailed insights into any patterns that may emerge from the experiences you track.

How tracking helps

It’s sometimes difficult for people to know whether or not the symptoms they’re experiencing are related to endometriosis or something else. Endometriosis symptoms may begin in early adolescence, or show up later in adulthood (5). It’s most commonly diagnosed in people aged in their 30s or 40s (2). Symptoms may improve after menopause, but this isn’t the case for everyone (1). Often, the pain felt by those with endometriosis, despite being severe and affecting their lives, has been normalized and stigmatized, further leading to a delay in diagnosis and treatment (1).

Tracking your symptoms can help you and your healthcare provider identify which of your symptoms are related to endometriosis and also monitor how your symptoms change over time or in relation to treatment.

If you’re experiencing menstrual or pelvic pain that interferes with your usual daily activities, or if you have any concerns about your period, make an appointment with your healthcare provider and get it checked out.