What Does Stage 4 Endometriosis Mean?

Medically reviewed by Peter Weiss, MD

Stage 4 endometriosis is the most severe form of this chronic disease. People with stage 4 endometriosis have multiple, severe adhesions (scar tissue that binds together internal body surfaces) and lesions (implants of tissue similar to the endometrial lining of the uterus) throughout or outside their reproductive tract. This includes the presence of ovarian endometriomas (cystic lesions, or chocolate cysts) in one or both ovaries.

Symptom severity is not factored into endometriosis staging. Someone in stage 1 or 2 can have more intense symptoms, including pelvic pain, than someone in stage 3 or 4. Infertility, a common side effect of endometriosis, is very likely to affect people with stage 4 disease.

This article will explain the endometriosis staging system that healthcare providers most commonly use. It will explore how endometriosis affects fertility, plus the symptoms and complications that may occur. It will also dig into treatments for this condition.

Endometriosis Staging System

The most well-known staging system for endometriosis was developed by the American Society for Reproductive Medicine (ASRM). ASRM revised its original staging guidelines in 1996. These revised guidelines (rASRM) are used worldwide today by diagnosing physicians. Since ASRM is a membership organization of infertility professionals, fertility potential was a main focus of the staging system they developed.

ASRM's ranking guidelines are based on the physical presence of endometriosis, not on symptoms such as pain. This system is point based. It ranks the disease in stages 1 to 4. Stage 4 endometriosis is diagnosed in people with more than 40 points. Points are determined by the number, depth, and size of lesions, as well as their locations:

• Stage 1 (minimal): Superficial endometrial-like tissue growth (implants) of 1 to 3 centimeters (cm) are seen outside the uterus, plus thin, filmy adhesions of 1 to 3 cm in one ovary.

• Stage 2 (mild): In addition to superficial implants and filmy adhesions, deeper implants of over 3 cm may form outside the uterus and in one or both ovaries.

• Stage 3 (moderate): Higher numbers of superficial and deep implants are seen outside the uterus, and deep chocolate cysts in one or both ovaries. Dense adhesions may close one or both of the fallopian tubes.

• Stage 4 (severe): Significant numbers of deep and superficial implants and adhesions are seen, plus large, deep endometriomas in one or both ovaries. The area between the rectum and uterus (cul-de-sac) may be completely obliterated by scar tissue and adhesions.

Can Endometriosis Progress?

Endometriosis is a progressive disease that can start as early as the teenage years.

In some instances, you may remain asymptomatic, despite the disease's progression. This can make getting an early diagnosis and treatment less likely to occur. Untreated endometriosis can continue to spread, causing scarring, adhesions, and complications like infertility.

How Serious Is Stage 4 Endometriosis?

Stage 4 endometriosis is not considered to be a fatal disease. However, it can cause dangerous, life-threatening side effects, plus severely hamper your quality of life.

Endometriosis stage 4 can cause chronic, unrelenting pelvic pain and severe menstrual cramps that necessitate time off from work and social engagements. It can also make sex painful, hampering intimacy and relationships. The burden of these symptoms can cause depression, anxiety, and isolation.

Effect on Fertility

Endometriosis, across all stages, is found in 24% to 50% of people assigned female at birth who have trouble conceiving. This diagnosis may hamper fertility in a variety of ways. Inflammation, hormonal changes, and alterations to the pelvic environment are all thought to play a role.

In people with stage 4, physical barriers to conception also exist. Pelvic adhesions in and around the fallopian tubes can block the transport of eggs. Pelvic adhesions can also prevent sperm from meeting and fertilizing an egg during ovulation,

Ovarian endometriomas are thought to hamper fertility by altering the shape of the ovary and by reducing ovarian reserve (the number of healthy, immature eggs within the ovary).

Despite these obstacles, pregnancy is possible with endometriosis stage 4. However, it may be challenging to achieve. Conception may occur naturally, but the odds are not in your favor. In most instances, medical treatments like in vitro fertilization (IVF) will be required.

Severe Symptoms of Stage 4 Endometriosis

All stages of endometriosis, including stage 4, may cause debilitating menstrual cramps and pain that extends into the abdomen and lower back.

People with endometriosis stage 4 may have deep, penetrative implants (lesions) as well as scar tissue that extends beyond the reproductive organs. Affected areas can include the bladder, bowel, and rectum. Endometriosis in these locations can cause significant pain during bowel movements and urination. Nausea, constipation, and diarrhea may also result.

Complications

The pelvic adhesions caused by endometriosis stage 4 can increase your risk of having a non-viable, ectopic pregnancy. An ectopic pregnancy is caused by the implantation of a fertilized egg outside of the uterus, usually in a fallopian tube.

If endometriosis grows on or in your bladder or bowel, you may need surgery to remove the lesions. In some instances, this may require the removal of part of the organ, as well.

These complications can be worrisome, but what you shouldn't spend time worrying about is cancer. Endometriosis stage 4 has not been definitively shown to increase your risk for endometrial cancer, or for other types of cancer.

Asymptomatic Stage 4 Endo

Asymptomatic or silent endometriosis can occur at any stage. Even though stage 4 is the most severe stage of this disease, it's possible to not have overt symptoms.

Some people find out they have stage 4 endometriosis for the first time when they have trouble getting pregnant. Testing for other conditions may also sometimes uncover evidence of endometriosis.

How Do You Know If You Have Stage 4 Endometriosis?

To get a diagnosis:

• Catalog your symptoms: Endometriosis stage 4 can affect many organs and areas of the body. Make a comprehensive list of all of your symptoms, even if you don't think they're related to each other. Make sure to include symptoms that occur during menstruation and other times.

• Discuss your list with a healthcare provider: Discuss your concerns with your current healthcare provider, if you have one, or find a healthcare provider or clinic where you can discuss your concerns.

• Consider getting a second opinion: Anecdotal evidence indicates that hysterectomy (surgical removal of the uterus) is recommended too quickly in some instances. Make sure to get a second opinion before undergoing any major surgery, especially if you hope to start or add to your family.

• See a specialist: The only way to get a definitive diagnosis of endometriosis stage 4 is to undergo a minor surgical procedure called a laparoscopy. A specialist, such as a reproductive endocrinologist or surgeon, can discuss the procedure with you in detail and explain your results.

If you suspect you have stage 4 endometriosis and aren't ready to have a laparoscopy, ask your healthcare provider for endometriosis ultrasound as a first step. This imaging test can show clumps of tissue that may (or may not) be endometriosis. Endometriomas and deeply embedded endometrial tissue in organs may also be visible.

Ultrasounds can be helpful but can't be used to distinguish the composition of the tissues they see. While not a diagnostic tool, an ultrasound may be helpful for guiding you toward your next course of action.

Risks of Untreated Stage 4 Endometriosis

Endometriosis can worsen if it's not treated. However, if you're asymptomatic or approaching menopause, you may not need to undergo treatment if you don't choose to.

If you have symptoms like pain or overly heavy periods, starting treatment can make life easier.

The most likely risk of untreated stage 4 endo is infertility. Endometriosis growth and spread can make it harder for you to conceive and may affect your ability to carry a healthy pregnancy to term.

Endometriosis that spreads to external organs, while less likely, can also occur.

Treatment Options for Stage 4 Endo

There's no cure for stage 4 endometriosis, or for endometriosis at other stages. However, treatment options for stage 4 endo can be used to reduce pain, and improve quality of life.

Surgery is often used to treat endo at stage 4. There are several types your healthcare provider may recommend.

Surgery can be used to remove endometrial tissue from areas where it doesn't belong. However, surgical procedures provide only temporary relief. Endometrial tissue typically grows back within several years.

Laparoscopic Excision for Stage 4 Endometriosis

Laparoscopic surgery is the most common surgical treatment for advanced endometriosis in stage 4. Your surgeon may use this procedure to diagnose and treat endometriosis simultaneously.

During a laparoscopy, your surgeon will make several small incisions in your abdomen. A thin, lighted tube with a camera on one end will be inserted through one incision. Your surgeon will use this tube to view your pelvis and internal organs. Tiny tools or heat will be used to cut out (excise) or burn (ablate) endometrial tissue, scar tissue, and endometriomas.

Other Surgical Options

Laparotomy: In some instances, a laparotomy may be recommended, although this is uncommon. This procedure requires a larger abdominal incision to give your surgeon easier access to areas with significant numbers of implants. It also allows your surgeon to view and treat endometriosis in other organs within your abdomen.

Hysterectomy: If pain or other symptoms are debilitating and don't respond to more conservative treatments, a hysterectomy may be considered. During this procedure, your uterus will be surgically removed. A hysterectomy may also include the removal of your ovaries (oophorectomy).

This procedure dramatically decreases estrogen levels in the body, which slows down or stops the growth of endometrial tissue. It also eliminates the possibility of pregnancy.

If a hysterectomy is considered your best option, but you wish to have a family, talk to your healthcare provider about freezing your eggs or embryos first. A gestational carrier (surrogate) can carry a pregnancy to term with your biological material, enabling you to be a parent.

Does Medication Help Stage 4 Endometriosis?

Pain medication may be beneficial for alleviating pelvic pain, back pain, and menstrual cramps. Your healthcare provider may recommend over-the-counter (OTC) medication, or prescribed drugs.

Hormonal therapy is sometimes offered as an alternative to surgery. This treatment may be used to stop your body from producing too much estrogen and other ovulatory hormones.

Endometrial-like tissue outside of the uterus is affected by the hormonal fluctuations caused by the menstrual cycle. When estrogen levels rise, endometriosis pain can worsen significantly. Hormonal medications used for this purpose include:

• Oral contraceptives that contain estrogen and progesterone: To control estrogen production

• Progestins (a synthetic form of progesterone): To halt the menstrual cycle

• Gonadotropin-releasing hormone antagonists: To stop production of follicle-stimulating hormone (FSH) and luteinizing hormone (LH) by the pituitary gland

• Gonadotropin-releasing hormone agonists: To stop the ovaries from making estrogen and progesterone

Not only do endometriosis implants respond to estrogen produced by the ovaries, but these lesions also produce estrogen. Medications can suppress hormone production, including estrogen, but they do not shrink the lesions.

Living Well and Coping With Stage 4 Endo

Living with stage 4 endo can be challenging, and exhausting. However, there are strategies you can use that may be helpful during and after treatment.

Pelvic Floor Physical Therapy: Benefits for Stage 4 Endo

Your pelvic floor muscles support your reproductive organs and urinary tract. Pelvic floor physical therapy relaxes, strengthens, and lengthens these muscles which can reduce pelvic pain, and alleviate spasms. Pelvic floor physical therapy may also calm down painful urination, and make sex more comfortable.

Ongoing Management of Stage 4 Endometriosis

Endometriosis is not a one-size-fits-all disease. How it affects you personally may also change as you age. Working with a healthcare provider who specializes in endometriosis will help you determine if and how your treatments should change as time passes.

Endometrial-like tissue can return in the years following surgery. If you notice a change in your symptoms, let a healthcare provider know. They can work with you on the next steps, including hormonal therapy or subsequent surgery.

Emotional Support

Living and coping with endometriosis is bound to have its share of ups and downs. Working with a therapist may be helpful. You may also find great value in connecting with others who are going through what you're going through.

Endo Warriors, an online support organization, may be able to find an "endo buddy" for you to connect with. Your healthcare provider may also be able to recommend local organizations or support groups you can reach out to.

Summary

Stage 4 endometriosis is the most severe form of this disease. It is earmarked by large numbers of deep and superficial endometrial-like tissue growth inside the reproductive tract. Other organs in the pelvic region and abdomen may also be affected.

Infertility is highly associated with stage 4 endo. Other symptoms, such as pelvic pain and severe menstrual cramps, are also likely. In some instances, stage 4 endometriosis may be asymptomatic and not cause pain.

Treatments for this condition include laparoscopic surgery and hormonal therapy.