How Does Your Diagnosis Experience Compare?

While each person with endometriosis has a different diagnosis story, there are many similarities that connect our community.

Find out how your experiences compare to others, and where your stories diverge! Vote in our polls to share your story, and provide insight into the diagnosis journey.


Have you been clinically diagnosed with endometriosis?

Overall, receiving a diagnosis of endometriosis can take quite some time, with many receiving a diagnosis 5 to 10 years after the onset of symptoms. Each individual’s experience with the diagnostic process can vary.


How long did it take before you were diagnosed?

Diagnosing endometriosis can be challenging, as endometriosis symptoms can present in many ways, and at any time in a woman’s life. Many women with endometriosis experience delays in diagnosis, often showing symptoms for several years before they get answers. Additionally, some women with endometriosis experience few to no symptoms, while others experience debilitating pain and other symptoms.


How difficult was it to receive your endometriosis diagnosis?

Despite their treatment experiences, many patients are satisfied with their healthcare professionals. At medical appointments, there can be a lot of new information presented in a short amount of time. It's important to ask questions to make sure you understand everything that is happening.


How well do you feel you understand your diagnosis?

According to our 2018 Endometriosis In America survey, although 2/3 of women feel that they play an active role in treatment decisions, few believe that their endometriosis is controlled. More than 3/4 of women have had a laparoscopy to treat their endometriosis, and over 1/2 have had more than one.


How well do you feel your physician understands your endometriosis?

Endometriosis shares symptoms with many other medical conditions, ranging from urinary tract infections to inflammatory bowel disease. These similarities can prolong the diagnostic process as potential conditions are narrowed down.


Did you receive a misdiagnosis prior to your endo diagnosis?

Raising awareness for endometriosis is so important. In doing so, we can help others to grasp even just a small part of what women with endometriosis deal with on a daily basis, and hopefully, bring others to a place of understanding and empathy.


Did you know what endometriosis was prior to your diagnosis?

Coping with an endometriosis diagnosis may cause feelings of isolation and distress. Although life with an invisible illness has its challenges, there are strategies that may help an individual cope, including several of the options listed here. Support groups, whether they are online or in-person, can also be a great asset when coping with endometriosis or another invisible illness.


Have you found it difficult to discuss your diagnosis or symptoms with loved ones?

Thanks for voting! Have more to share? Tell the story about your diagnosis to help others feel less alone. Click below to share your story.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

More on this topic

Join the conversation

or create an account to comment.