Getting a diagnosis of endometriosis can be a long process. It is estimated that, on average, 7.5 years pass from the start of symptoms to diagnosis. This means that women may continue to suffer and live in pain for years until they find a doctor who suggests the problem might be endometriosis or they learn about endometriosis on their own.
A study was done in the Netherlands that asked General Practitioners their knowledge about endometriosis and how often they encounter it. The study showed that doctors did not know the answers to at least 50% of the basic knowledge questions on endometriosis. Additionally, doctors claimed to only see 2-3 women a year that have endometriosis, but based on population statistics on the disease they should be seeing between 7 and 37 women with the disease. This means they are not recognizing the signs of endometriosis in most of their patients. Also, about half of the patients who the doctors suspect have endometriosis have brought that diagnosis to the doctor from internet research. This study is discussed in resource 2 (see below).
When endometriosis is suspected, laparoscopic surgery is done to get a definitive diagnosis. The surgery entails the patient being put under general anesthesia while the doctor makes a tiny incision in the belly button and inserts a small camera (a laparoscope). The doctor then looks for endometrial tissue that is outside of the uterus. The doctors look at the size, depth, appearance, and location of the endometrial tissue. They also look out for cysts associated with endometriosis and adhesions (tissue that binds organs together abnormally). Some doctors prefer to treat the endometriosis during the diagnostic surgery, while some doctors recommend waiting to treat the endometriosis until all options can be discussed.
My road to diagnosis was difficult. I started getting terrible cramps during menstruation when I was 13. I also dealt with bad stomach aches. I soon started visiting doctors to figure out what was wrong. I honestly can’t remember how many doctors I saw. I went to multiple general practitioners, an OBGYN, a pediatric gastroenterologist, a homeopathic specialist, counselors, and psychiatrists. I also started getting tests done. By the time I was 18 I had had an ultrasound, an endoscopy, a colonoscopy, CT scans, and enumerable blood tests. I was always told they could not find anything wrong. A few doctors suggested a counselor and psychiatrist for potential anxiety. Even after being diagnosed with depression and anxiety, and taking medicine that helped, I still lived in pain.
When I was 17 I ended up in the hospital for the first time. I had severe abdominal pain (10/10 on the pain scale) and could not stop throwing up. I mentioned to the doctor that I had just started my period, but he didn’t seem to think that meant anything. They did blood tests and CT scans and found nothing. I was sent home with anti-nausea and pain medicine.
A little over a year later I was in the hospital for the fourth time. I was talking to a student intern and she mentioned it might be endometriosis. I quickly googled it on my cellphone and showed my mom. We both got excited that we may have finally found what was wrong. I quickly made an appointment with my OBGYN and she said it was extremely likely that I had endometriosis. After discussing my options and a few days of thinking, I decided to have laparoscopic surgery. A month after I turned 19 (and during my spring break of freshman year) I had the surgery and received the diagnosis. I had endometriosis.
Hogg, Susannah, and Sanjay Vyas. “Endometriosis.” Obstetrics, Gynaecology And Reproductive Medicine (2015)
Zanden, Moniek Van Der, and Annemiek W. Nap. “Knowledge Of, and Treatment Strategies For, Endometriosis among General Practitioners.”Reproductive BioMedicine Online 32.5 (2016): 527-31. Web.