Stage 4
endometriosis is the final and most severe stage of this chronic condition. In stage 4, uterine tissue grows in many places throughout the body. Extensive adhesions are present, where scar tissue fuses organs together, such as the uterus and rectum or the ovaries and fallopian tubes.
Endometriosis isn’t life threatening, but it can cause serious complications. Although endometriosis has no cure, treatments can slow the spread and help people manage pain.
Your endometriosis stage doesn’t always correlate with your symptoms. Some people with stage 4 may have no symptoms, while others in stage 1 may report many.
Other symptoms of stage 4 endometriosis include:
Experts don’t know for sure what causes endometriosis at any stage. But the causes and risk factors may center on genetic, biological, and environmental elements. Experts think that the same triggers of early endometriosis may also lead to its progression to stage 4. These causes include:
- Retrograde menstruation: This is when menstrual blood, including endometrial tissue, flows backward into the fallopian tubes instead of out of the body.
- More exposure to estrogen: This may be from early menstruation or short periods.
- Immune system dysfunction: The immune system might fail to prompt the body to remove endometrial tissue that is growing outside the uterus.
- An overactive inflammatory response: This happens when the immune system reacts to endometrial implants outside the uterus.
- Direct transplantation: This is when endometrial cells attach to other areas of the body after a surgery, such as a C-section.
Risk factors for stage 4 endometriosis include:
- Age (25 to 50)
- Genetics or a family history of endometriosis
- Not having had children
- A diet high in red meat and trans fats
- Menstruation issues, such as short cycles, heavier flows, or longer periods
- Getting your first period before age 11
To
diagnose stage 4 endometriosis, your provider must evaluate your symptoms and perform tests. Endometriosis is staged based on factors like:
- Amount of deep and superficial implants
- Number and severity of adhesions
- Presence of chocolate cysts in the ovaries (growths filled with old blood)
Your provider will use one or more of the following to diagnose stage 4 endometriosis:
- Pelvic exam: Your provider feels for large growths or scars behind your uterus.
- Ultrasound: This imaging test, done with a vaginal wand or device placed on your stomach, uses sound waves to create a picture of your organs.
- MRI: Magnetic resonance imaging, or MRI, takes a more detailed picture of your body’s insides.
- Laparoscopy: To perform a laparoscopy, a surgeon makes two or three small incisions in your abdomen and inserts a camera to look for lesions and implants. During surgery, they may take small samples of suspicious tissue to check in the lab.
If your provider doesn’t find evidence of endometriosis using these exams and tests, they may prescribe hormonal birth control and medication that blocks the menstrual cycle and lowers estrogen. If your pain improves on this medicine, it suggests that you have endometriosis.
Endometriosis Staging
With endometriosis, areas of uterine tissue (endometrial) growth, called “lesions,” “implants,” or “nodules,” are typically found near the uterus.
The American Society for Reproductive Medicine (ASRM) divides endometriosis into four stages, with stage 1 being mild and stage 4 being severe. The ASRM bases staging results on the location and size of implants and lesions, along with damage to nearby organs.
Since people don’t always experience symptoms that match up with their stage, some experts believe that other staging methods may better direct treatment.
Treatment for endometriosis looks similar across all stages, except that stage 4 endometriosis may require surgery for symptom control.
Medication Options
Medication for stage 4 endometriosis focuses on relieving pain and managing hormone levels. Hormone therapies can slow endometrial tissue growth and prevent new implants.
Hormonal medications come in pills, shots, and nasal sprays, including:
- Birth control pills: These control estrogen and progesterone levels and can be right for those who are not trying to get pregnant.
- Levonorgestrel-releasing intrauterine devices: These may help with pelvic pain. (Mirena is an example of one.)
- Progestins: These stop menstrual periods and the growth of endometrial tissue.
- Gonadotropin-releasing hormone (GnRH) antagonists: These limit ovarian hormone production.
- GnRH agonists: These stop ovarian hormones.
- Aromatase inhibitors: These lower estrogen levels.
Your provider may also recommend pain relievers for symptom management.
Surgery
For severe stage 4 endometriosis, your provider may recommend surgery to remove endometrial tissue and scar tissue.
Surgical options include:
- Laparoscopy: In this minimally invasive procedure, endometrial tissue and scar tissue are removed via small incisions.
- Laparotomy: This requires a larger incision to remove tissue and is used less often.
- Hysterectomy: In this procedure, the uterus is removed to stop endometrial tissue growth.
- Oophorectomy: Here the ovaries are removed to stop hormone production.
Complementary and Integrative Therapies
Some people with stage 4 endometriosis report symptom relief from complementary therapies, such as:
Always check with your healthcare provider before taking any new herbs or supplements.
Although endometriosis itself can’t be prevented, you can slow its progression to stage 4 by following your treatment plan.
Medications that treat endometriosis can slow tissue growth and prevent new implants. If you experience any symptoms of endometriosis, let your provider know.
No cure exists for stage 4 endometriosis, but the condition isn’t life-threatening, and you can treat the symptoms and slow its progression.
Some people may experience relief over time, as endometriosis pain can improve after menopause. Others may have continual pain that affects their daily life.
The most common complication of stage 4 endometriosis is infertility. People with endometriosis may experience higher rates of miscarriage and
ectopic pregnancy.
If you’re concerned about your
fertility, you can ask your provider about the many
treatments to improve fertility in stage 4 endometriosis.
Other complications of stage 4 endometriosis may include:
If you experience any of these symptoms, notify your healthcare provider. For shortness of breath and chest pain, go to a nearby emergency room or call 911.
Around the world, endometriosis affects about 190 million women and girls of reproductive age (10 percent).
In a study review of about 127,000 women with endometriosis in the United States, only 2 percent had stage 4, compared with 20 percent with stage 1.
Disparities may exist in data involving endometriosis of any stage, since few studies have explored how symptoms vary across different races and ethnicities. These inequities often come from selection bias — choosing mostly people of white racial origin for studies. So, experts may not identify stage 4 endometriosis in women of color as easily.
Some studies indicate that endometriosis diagnoses are more common in Asian women and less common in
Black women, compared with white women.
But other research finds no difference in endometriosis between racial groups. Endometriosis is one of the most common reasons for Black women in the United States to have gynecologic surgery.
Endometriosis is a disease of the uterus, involving the overgrowth of uterine endometrial tissue outside of that organ. The pain and other symptoms associated with this disease can also point to other related conditions, including:
The Endometriosis Association
This organization offers support for anyone with endometriosis. They offer an advocacy program, a correspondence support network, an online community, and a crisis hotline.
Endometriosis Foundation of America (EndoFound)
This organization provides support through patient resources, conferences, and community outreach programs. They also support research, boost public awareness, and provide education on endometriosis to communities and healthcare providers.
MyEndometriosisTeam
This organization offers emotional support and practical advice through discussion forums, resource sharing, and peer support. They provide a safe space for people to connect and exchange treatment insights with other people going through similar symptoms.
