I lived most of my life not even suspecting I had endometriosis. I had very painful and heavy periods, but was put on the pill when I was still a teenager. Then, I spent years not really worrying about it. It was only when I decided to go off birth control and learned to chart my cycle that I found real help. I’ve felt angry that it took so long for someone to look for the reasons behind my irregular cycles, painful periods, and other symptoms. But, it turns out that that even when you’re looking for endometriosis, it’s pretty difficult to diagnose.
What is Endometriosis?
Endometriosis is a condition in which tissue similar to the endometrium (the lining of the uterus) grows outside the uterus, often (but not always) on organs in the pelvic area, such as the ovaries or fallopian tubes, or behind the uterus on ligaments that attach the uterus. Because this tissue is similar to endometrial tissue, it also breaks down and bleeds during menstruation. However, unlike tissue in the uterus, there’s no way for it to leave, so it remains where it is, causes inflammation, and forms into scar tissue, adhesions, and bands of other tissue. About 10% of women of reproductive age globally are affected, but since many cases go undiagnosed, the true incidence of endometriosis could be as high as 18-20%.
The resulting tissue and adhesions can cause several symptoms, including pain (the most common symptom), heavy bleeding during menstruation, pain during sex, ovarian cysts (known as endometriomas or chocolate cysts), and gastrointestinal and bowel problems. To categorize the extent and severity of the disease of endometriosis in a patient, healthcare providers often use a system of endometriosis “stages” as a benchmark. But for various reasons which we’ll discuss in this article, the current classification of endometriosis stages is far from perfect, and not always the best metric for measuring the impact of the disease in a woman’s life.
Diagnosing Endometriosis through surgery
Endometriosis can only be definitively diagnosed with laparoscopic surgery, which involves small incisions in the abdomen and the insertion of a camera to look for lesions. Pelvic exams, ultrasounds, and the evaluation of symptoms can help indicate to a physician that a patient might have endometriosis, and some lesions may be visible with an ultrasound or MRI. However, even in those cases, only surgery can show the full extent of the endometriosis (and even via surgery some lesions are not always easily visualized).
I was lucky, because my surgeon was able to diagnose and excise my endometriosis in the same surgery. But not everyone is that lucky, and so the fact that endometriosis diagnosis requires surgery can be a significant barrier to finding help. We need more research to understand endometriosis and explore other methods of diagnosis (and treatment).
The 4 stages of Endometriosis
Part of a diagnosis of endometriosis is a classification of it on a continuum of stages. The most common classification method is the American Society of Reproductive Medicine’s (ASRM) four stages, which depends not on the severity of the symptoms but on what is seen when the diseased tissue is visualized during surgery and where it has spread, i.e.: “the location, amount, depth and size of the endometrial tissue,” according to Johns Hopkins Medicine. As it happens, it’s possible for a woman to have stage 1 endometriosis and be in severe pain, and it’s possible for a woman to have stage 4 endometriosis and not feel any symptoms.
The ASRM’s four stages are based on a system that assigns points based on the size of the lesions and the extent to which they have adhered to the ovaries, peritoneum, and fallopian tubes:
- Stage 1: minimal (1 to 5 points)
- Stage 2: mild (6 to 15 points)
- Stage 3: moderate (16 to 40 points)
- Stage 4: severe (more than 40 points)
These stages are useful in helping doctors evaluate fertility, but have been criticized because they do not provide information on symptoms or their severity. In fact, organizations such as the Endometriosis Foundation of America and the World Endometriosis Society have proposed a different categorization system to help inform treatment and prognosis. A January 2021 article in the Yeungnam University Journal of Medicine put it well: “Currently, none of the classification systems are considered the gold standard,” and this “lack of a gold standard staging system is a concerning issue.”
“The ideal classification system,” the authors note, “should be able to explain the extent of disease, predict pain and fertility, provide accurate information to patients, and reflect the anatomical features.”
What do the stages of Endometriosis mean to you?
My own endometriosis diagnosis came with excision surgery to remove it, and my surgeon didn’t even give me a stage number until I asked (even then, it was “2 to 3,” not a definitive number). After all, she’d removed the endometriosis and was optimistic that it was no longer an impediment to my fertility (and that optimism was rewarded when I was able to get pregnant as soon as we started trying!) … So, did it really matter what stage of endometriosis I was in?
Ultimately, your endometriosis diagnosis (regardless of the stage) should bring some validation and some hope: You are not imagining your pain. It is real, it has a real cause, and there is real treatment available for those who seek it. Note that while birth control is often offered to manage endometriosis, it is not a “treatment,” but rather just masks the symptoms of the disease. There are some medical treatments such as GnRh agonists (leuprolide) which may help resolve symptoms/lesions, and excision surgery by a skilled surgeon can be very effective at eliminating most or all lesions, but there is no “cure” in the strictest sense for this disease.
If you still need a diagnosis, or you have a diagnosis and now need to find a good surgeon, there are great options among Restorative Reproductive Medicine providers. In the meantime, we can advocate for more research on better ways to diagnose and classify endometriosis, so that women suffering with this condition can get the treatment they need earlier.