How long did it take you to get diagnosed and why do you think it took that long?

That's so great that you're doing a research project on this!


It took me until age 31 to get diagnosed.


One major reason, I think, is that diseases that affect women and those assigned female at birth are so underfunded and understudied. We just don't know a lot about it compared to other diseases out there that get the funding and research dollars. And so, there are a great many gynecologists out there that don't know much about endo, or even worse, only know things that are wrong or misconceptions. This leads to sub-par care and misdiagnosis.


Good luck with your project! ~Katrina, Endometriosis.net Advocate

Endometriosis can cause a wide range of symptoms, and it can take a long time to figure out what's wrong because the symptoms are so vague and can also be caused by other conditions. Recent studies show that it takes women an average of 7.5 years from the first time they talk to a doctor about their symptoms until they get a clear diagnosis.

thank you so much for your question! I am happy to see you are doing a research project to spread awareness. I truly believe this topic is SO very important to raise awareness about. I was diagnosed in 2017, after 12+ years of fighting. I think what took so long is that most doctors had NO idea what endometriosis even was. And if they had somewhat of an idea, they didn't know to the full extent just what endometriosis can do. The symptoms of endometriosis are SO close and relatable to other illnesses as well. So many times, they just said I had IBS, and I was fine. I also feel it took so long because doctors don't take women's health seriously. Many times, we are told we are just being dramatic. That our pain isn't all that bad or it is normal. They definitely have misconceptions about periods, too! So those are some of my reasonings as to why I think endometriosis takes so long to be diagnosed! Sending well wishes to you and your project! -Kimberli (team member)

Endometriosis takes so long to be diagnosed because as a society there is a stigma around women discussing their periods and pain during sex. Our family members are quick to say that we are being dramatic over normal pain or we are just seeking attention. Once somebody does seek medical care, endometriosis is not seen on a type of scan or found in blood work. Doctors cannot provide a 100% diagnosis until they do a laparoscopic surgery to see inside the abdomen. Unfortunately, doctors do not want to go around doing laparoscopic surgeries on everybody with abdominal pain and heavy bleeding. We basically have to prove that it is not anything else. I even had to have a colonoscopy to prove to doctors that it was not a bowel related issue.





I am one of the lucky ones. It took me 3-4 years to be diagnosed. In my case, my mother knew that something was wrong with me and that it was most likely endometriosis. She assumed this because she had issues with endometriosis and periods herself. This meant when a doctor told us the severe pain was just in my head or that I was being dramatic over normal pain, she called BS and we looked for another doctor. At the time, doctors did not want to diagnose a young teen with endometriosis. Eventually, we saw about 10 obgyns prior to finding a practice with two older obgyns who took my pain and symptoms seriously.
If my mother had not believed me when I told her about my pain and abnormal bleeding (plus the issues with cysts), I can only imagine how long it would have taken me to be diagnosed.