The Stages and Types of Endometriosis and How to Get Your Diagnosis
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Let’s get one thing straight: period pain is not normal.
Sure, we all experience some discomfort during that time of the month, and once in a while we may have a particularly painful few days of cramping. But if you’re having consistent painful periods where the pain is so debilitating that you have to take off work or stay in bed all day, you may be experiencing endometriosis, and you should definitely reach out to your doctor right away.
We spoke with women’s health experts and practicing gynecologists to comprehensively explain the different stages of endometriosis and how they are diagnosed. But first, you may be asking:
What is endometriosis?
Endometriosis is where tissue that normally lines the uterus is found outside the uterus, says Sherry Ross, M.D., women’s sexual health expert, author of She-ology and The She-quel. “‘Endometrial implants,’ as they are referred to, can be found on the ovaries, fallopian tubes, bowels, bladder and anywhere else in the pelvis,” she adds.
This chronic genetic inflammatory condition in the pelvis is most commonly characterized by painful periods, says Khara Simpson, M.D., Assistant Professor of Gynecology and Obstetrics at Johns Hopkins Medicine.
What are the different stages/types of endometriosis?
Dr. Ross notes that the stages of endometriosis are helpful in understanding the extent of the disease process which, ultimately, guides treatment strategy and prognosis. She adds that the different stages of endometriosis are distinguished by “looking at the spread of the endometrial tissue, its depth, areas of the pelvic structures affected, extent of pelvic adhesions and blockage of the fallopian tubes,” says Dr. Ross.
From a surgical standpoint, there can be superficial or peritoneal endometriosis, in which the peritoneum, the membrane that lines the abdomen, is infiltrated with endometriosis tissue, or there can be deep infiltrating endometriosis (D.I.E.), which involves other organs within and/or outside the pelvic cavity, explains Dr. Simpson. “Each will respond differently to to different types of surgical management.”
The American Society for Reproductive Medicine or ASRM classification system is divided into four stages or grades according to the number of lesions and depth of infiltration:
Stage 1 (1-5 Points): Minimal endometriosis with a small number of implants found on your organs or the tissue lining your pelvis or abdomen. Scar tissue will probably not be seen.
Stage 2 (6-15 Points): Mild endometriosis has more noticeable and deeper implants than Stage 1. Scar tissue can also be seen.
Stage 3 (16-40 Points): Moderate endometriosis has deep implants, with cysts on one or both ovaries and the presence of filmy adhesions.
Stage 4 (>40 points): Severe endometriosis has many deep implants with large cysts on one or both ovaries and many dense filmy adhesions.
It’s important to note that the woman’s pain is not dependent on the stage of endometriosis, and vice versa. A person could have stage 4 endometriosis but not have a lot of pain, whereas someone who has stage 1 disease could be experiencing a lot more pain, explains Dr. Simpson. “Stage is independent of patient symptoms.”
How are the stages of endometriosis diagnosed? And are the symptoms different for each?
The stages of endometriosis are diagnosed by laparoscopy and biopsies of suspicious tissue, says Dr. Ross. Pelvic ultrasound, CT and MRI scans are also used to see the extent of endometriosis in the body, depending on the type of endometriosis you are suffering from.
As mentioned before, symptoms of endometriosis do not reflect the stage of this unpredictable disease. Anyone’s symptoms for endometriosis can include severe menstrual cramps and irregular or heavy blood flow, pain with intercourse, infertility, painful urination during a menstrual period, diarrhea, constipation, and nausea.
How does the stage of endometriosis affect treatment?
“Treatment will depend on the severity and disruption of symptoms of this unpredictable disease,” says Dr. Ross.
Typically, the symptoms are managed first, so “the standard of care is the patient shows symptoms and then is started on an anti-inflammatory and birth control pills,” says Dr. Simpson.
However, in some cases, surgery may be the best course of action, according to Dr. Simpson. “In some cases, a patient's endometriosis can cause an endometrioma, a cyst of endometrial fluid that fills the ovary, which will not get better with medical management and must be surgically treated. Another case in which a surgical approach is common is if someone is suffering from infertility, which can be a result of endometriosis.”
Since endometriosis is a chronic condition, there is always a risk of recurrence, especially in those patients with more severe disease. “We are always treating the disease that we see, but we aren’t preventing it from coming back,” explains Dr. Simpson. When the surgeon finds endometriosis, the endometrial implants can either be cut out (excision) or burned off (ablation).
All in all, Dr. Simpson says that “a surgical treatment plan always follows how severe someone’s pain is, whether or not they’ve responded to other medical therapies, and if they want to have kids.” In most extreme cases, some patients opt for a hysterectomy (removal of uterus) and possibly an oophorectomy (removal of ovaries).
Healthy lifestyle habits including regular exercise, a colorful diet, avoiding constipation, a heating pad, meditation, Chinese medicine, homeopathic remedies, allergy management and immunotherapy are alternative treatment options sometimes recommended for endometriosis sufferers, says Dr. Ross.
What should you do if you think you might have endometriosis?
See your gynecologist and be evaluated.
Dr. Simpson always tells her patients that “pain with your periods is not normal. Discomfort with your periods can be normal. But if every month, your pain with your period stops you from being able to work, stops you from being able to do normal activities, if you have to stay in bed, that is not normal. If you feel like you can not go without ibuprofen on a high dose throughout your entire period, that is not normal.”
It’s important to be aware of the signs and symptoms of endometriosis since it is an underrepresented, disruptive, and overlooked disease that can affect 1 in 10 women, says Dr. Ross. “Early diagnosis and treatment can be life changing and validating. Women may need to lead the charge and be their best health care advocates in getting a proper diagnosis and treatment plan.”
What else do I need to know?
Our healthcare system and providers often overlook the signs and symptoms associated with endometriosis, says Dr. Ross.
“A delay in diagnosis is the norm which also means a delay in treatment. Women must be their best health care advocates and get 2nd and 3rd opinions until they feel heard and validated. Even though it’s up to medical professionals to connect the dots with symptoms, diagnosis and treatment of complicated medical diagnoses such as endometriosis, women must be persistent when unusual and painful symptoms become disruptive.”
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