Types and Stages of Endometriosis
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Categorizing the Stage and Type of Endometriosis Disease
The gold standard of diagnosis is laparoscopic surgery, during which a surgeon samples lesions for biopsy or excises the lesions. Once the medical care team has that information (biopsy results, visual verification of spread, depth, and affected organs), they may use different classification systems to categorize the disease.
Currently there are four different ways to classify the disease:
1. Staging by Location, Depth, and Cysts
- Stage 1 (1 to 5 points) A few superficial implants, mild adhesions
- Stage 2 (6 to 15 points) Slightly deeper implants and more adhesions
- Stage 3 (16 to 40 points) Deep implants, small chocolate cysts (ovarian endometriomas), deeper and filmy lesions, scarring
- Stage 4 (more than 40) Deep implants, large chocolate cysts, many dense adhesions, more scarring
2. Classifying Stages of Deep Infiltrating Endometriosis Only
“It does have a better correlation to pain, but the Enzian system is not as widely adopted because it is newer, and the diagrams are not as widely available. It’s hard for the surgeons to visualize and score the disease,” says Ted Lee, MD, chief of surgical innovation for gynecology at the NYU Grossman School of Medicine’s Department of Obstetrics and Gynecology in New York City.
3. Categorizing by Anatomical Location
- Category 1: Peritoneal Endometriosis A mild form that affects the peritoneum, the lining of the abdomen.
- Category 2: Chocolate Cysts Endometriosis cysts are in the ovaries, and risk breaking and spreading the disease further.
- Deep Infiltrating Endometriosis 1 (DIE I) Endometriosis has invaded the ovaries, rectum, and uterus.
- Deep Infiltrating Endometriosis 2 (DIE II) The most severe form, it affects organs within and without the pelvic cavity, including the bowels, appendix, diaphragm, heart, lungs, and (rarely) the brain.
4. Grading Fertility Levels
The endometriosis fertility index (EFI) is a numbered scoring system that estimates a woman’s chances for pregnancy after laparoscopic surgery to remove endometriosis lesions. Created in 2010 by G. David Adamson, MD, EFI can also help identify patients who are the best candidates for in vitro fertilization (IVF). The factors taken into consideration are:
- ASRM endometriosis stage
- Age
- Duration of infertility
- Previous pregnancies
- Functioning of organs such as fallopian tubes, ovaries, and fimbria (fingerlike projections from the ends of the fallopian tubes)
Related: Speaking Endometriosis: Glossary of Terms Used for Endometriosis Symptoms, Tests, Treatments, and More
What’s Missing: The Classification Systems Don’t Illuminate Levels of Pain
The jury is still out on whether these systems actually work. The big issue is that none of them predict symptoms very well. “If the tube has to transport egg, and sperm is blocked by scarring, that’s not captured in the ASRM staging. Also, the relationship between stage and pain is really unclear and unreliable, and none of these systems predicts whether someone has pain very well,” says Steven L. Young MD, PhD, division chief of reproductive endocrinology and infertility at the Duke University School of Medicine.
A woman can have severe pain even though she has a mild stage of endometriosis; and vice versa, she can have little to no pain even though the disease is quite advanced. Dr. Young added that sometimes the only way a woman finds out she has it is when she is dealing with infertility. Also, some women will still have pain despite lesion removal; some will still get pregnant without removal.
Obviously, more research is needed, since these categories often leave clinicians with more questions than answers. “We don’t even know if Stage 1 or 2 will often lead to 3 or 4. People who have the severe type probably have a biologically different disease than those with less severe, but we just don’t know,” Young says.
Related: What Is Silent Endometriosis?
Women may have minimal or mild endometriosis but experience debilitating pain because of the inflammatory nature and location of the lesion (for example, it is close to nerves, or invaded an organ). “Staging could be a detriment then because they may feel they are being dismissed or unheard if we say it’s a mild case,” says Young.
What About a Woman’s Pain Level?
Nicole Noyes, MD, chief of reproductive endocrinology and infertility at Northwell Health in New York City, concurred that the staging is not a magic bullet. “Over the years, I have not found it to correlate with the level of patient symptoms and thus don’t feel it necessarily predicts whether surgery will improve the situation. This is unlike cervical disease, where staging dictates best next treatments, so much so that there is now a physician app for Pap smear management.”
Related: Tippi Endometriosis: Where Women With Endometriosis, Professionals, and Caregivers Get and Give Advice
Dr. Noyes says her endometriosis treatment plans are driven by pain levels, the presence of ovarian cysts, and whether a woman desires to become pregnant. “Many gynecologic conditions center around quality-of-life issues, such as pain, sleep, or wanting a baby. Tolerance for these varies from woman to woman, so I often request that a patient gauge the impact symptoms are having on day-to-day life activities. It’s important to appreciate that endometriosis doesn’t have a predictable course and, notably, doesn’t always worsen over time. This makes the decision to operate a measure of risk versus benefit. While surgery often provides the greatest chance for improvement, it also poses the most risk. Together, the patient and I decide what is best for her individual case.”
“Stages help in research because you can classify something. It becomes a shorthand for clinicians to communicate with each other. They know what to expect and the likelihood of certain therapies. But while staging helps, I’d rather have a detailed description,” says Young.
What the World Endometriosis Society Said About Disease Staging
Translation: Clinicians should use the available systems as part of their arsenal for now until something better comes along, but employ every other diagnostic tool as well. A combination of information provides the best chance at disease management.
According to Dr. Lee, the AAGL, European Society of Gynaecological Endoscopy, European Society of Human Reproduction and Embryology, World Endometriosis Society, and many other international organizations have started working on a unifying global system. “Hopefully we can develop something that everyone will agree on. However, it is in its infancy, and won’t be ready for a few years,” says Lee.
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