If you’re familiar with endometriosis, you already know it’s no picnic. Pain and infertility are the most common signs of this condition, which affects at least 7-15% of women worldwide. Aside from potential fertility issues, endometriosis can also cause severe menstrual cramps that extend into the abdomen or lower back, pain during or after sex, and heavy or irregular periods. Other symptoms include pain during urination or bowel movement, and stomach problems like diarrhea, constipation, or bloating, aka “endo belly.”
So, what is endometriosis, exactly?
Endometriosis is tissue similar, but not identical, to the lining of the uterus that is found elsewhere in the body. This condition is most often found in the pelvis, but has also been found in the bladder, bowels, diaphragm, lungs, kidneys and even the brain. When endometriosis tissue grows in the wrong areas, it can cause inflammation, scarring, and painful cysts. Plus, it can block the fallopian tubes, leading to potential difficulties in getting pregnant.
But endometriosis isn’t a monolith, with doctors organizing this condition into four different stages. “Stages are classified based on the extent of disease and involvement of the tissue in the pelvis,” explains Cordelia Nwankwo, M.D., a board-certified OB/GYN in Washington, D.C. One of the most critical aspects of this classification system, however, is that a more advanced stage of endometriosis doesn’t automatically mean more severe symptoms or pain — or vice versa. “The extent of disease does not always correlate with the severity of symptoms,” says Dr. Nwankwo. “Someone with stage 1 minimal disease can have significant pain.”
On the other hand, someone with stage 4 “severe” endometriosis might experience few or no symptoms. So it’s completely understandable if endometriosis patients — who just want to understand their condition — are confused by this esoteric classification system. Not to worry, because Rescripted’s got you covered. Read on for our breakdown of each endometriosis stage, and what they mean in terms of treatment plans:
Stage 1 Endometriosis: Minimal
As previously stated, stage 1 of endometriosis is considered a “minimal” form of the disease. This is because it “involves a small amount of superficial lesions,” says Dr. Nwankwo. But that doesn’t mean patients with stage 1 endometriosis don’t experience substantial pain and discomfort.
Stage 2 Endometriosis: Mild
According to Dr. Nwankwo, stage 2 “has more lesions and may be more widespread but [the disease still remains superficial].” Scarring may also occur during this stage, which can potentially cause fertility issues. Make sure you have an honest discussion with your healthcare provider about your treatment plan if you’re planning on trying to conceive.
Stage 3 Endometriosis: Moderate
“Stage 3 tends to have deeper implants and can involve cysts, or endometriomas, on the ovaries,” says Dr. Nwankwo. These ovarian endometriomas are also known as “chocolate cysts,” because they’re filled with collected menstrual blood.
Stage 4 Endometriosis: Severe
“Stage 4 is the most severe and usually involves deep implants and significant adhesions, where tissue becomes stuck together,” explains Dr. Nwankwo. “It can involve surrounding organs in the pelvis.” The additional adhesions can also result in an increased risk of infertility.
Should I know my endometriosis stage?
While staying informed about your medical condition and treatment is always advantageous, the different stages of endometriosis are primarily useful for healthcare providers. “Knowing the stage of endometriosis can help providers determine the best treatment options or combination thereof,” says Dr. Nwankwo. “If surgery is being considered, knowing the stage helps in planning how extensive or aggressive surgical management should be.”
Endometriosis treatment typically involves either medication or surgery. Your treatment plan depends on your symptoms and whether or not you wish to get pregnant in the future. Your doctor may recommend first trying pain medication and/or — if you’re not TTC — hormone therapy. If your healthcare provider suggests surgical intervention, this usually entails the removal of endometriosis tissue via laparoscopic surgery, which may help reduce pain as well as increase your chances of getting pregnant.
From the patient’s point of view, knowing the stages “can be helpful in understanding the extent of the disease and what is affected,” says Dr. Nwankwo. But it’s important to remember that individualized treatment is based on symptoms, not stages. That’s because “the symptoms don’t always correlate [to the endometriosis stage].” Also, “the impact on quality of life varies regardless of stage.”
So, if you’re an endometriosis patient, the best thing you can do for your health is focus on your symptoms, rather than your stage number. It’s also imperative that you communicate with your healthcare provider about your symptoms and pain levels. Even if you have stage 1 endometriosis, that classification shouldn’t override the significant pain you may be experiencing. Your doctor will treat you according to your symptoms, not because your endo is considered “minimal.”
Sarene Leeds holds an M.S. in Professional Writing from NYU, and is a seasoned journalist, having written and reported on subjects ranging from TV and pop culture to health, wellness, and parenting over the course of her career. Her work has appeared in Rolling Stone, The Wall Street Journal, Vulture, SheKnows, and numerous other outlets. A staunch mental health advocate, Sarene also hosts the podcast “Emotional Abuse Is Real.” Visit her website here, or follow her on Instagram, BlueSky, or Threads.
