Endometriosis: General Information

What is endometriosis?

Endometriosis, pronounced, “end–o–me–tree–o–sis” can affect individuals born with female reproductive organs of all ages. It is an inflammatory condition that occurs when tissue similar to the inside lining of the uterus is found outside of its normal location. Endometrial implants can be found on the ovaries, fallopian tubes, and ligaments that support the uterus, and they can even implant on top of the bladder and rectum. The most common locations of endometrial implants are in the cul–de–sac area (behind the uterus) and near the bladder.

What are the symptoms of endometriosis?

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Endometriosis, or “endo,” causes different symptoms in young individuals. Pelvic pain and/or severe period cramps are the most common symptoms. There can be pain before, during or after your period. The pain may occur at regular times in your cycle or it may occur at any time during the month. You are considered to have chronic pelvic pain if pain has lasted for 3 to 6 months. The location of the endometrial implants and the way in which the lesions affect the pelvic organs contribute to the symptoms you may have. Some people with endo may have pain with exercise, sex, and/or after a pelvic exam. Approximately half of people with endometriosis also experience non-gynecologic symptoms such as painful or frequent urination, diarrhea or constipation. It’s important to remember that some people have a lot of endometriosis and have very little pain, while others may have a small amount of endometriosis and severe pain.

What causes endometriosis?

Although we know that some teens may be more at risk of endometriosis because of affected family relatives, we still do not know completely what causes this disease.

The three most accepted theories are:

• Sampson’s Theory: This theory explains that the flow of menstrual blood gets “backed up” causing some of the blood to flow in a reverse direction. This process causes blood containing endometrial tissue to attach to surfaces outside of the uterus.
• Meyer’s Theory: This theory proposes that specific cells called “metaplastic cells” change into endometrial cells and are actually present at birth.
• Vascular Theory: This theory suggests that the endometrial tissue “travels” through the body via blood vessels. It then reaches various tissues, implants, and then grows, causing pain.

How is endometriosis diagnosed?

The ONLY way to be 100% sure of this diagnosis is to have a procedure called a laparoscopy. There is no blood test, x–ray, ultrasound, or MRI that can diagnose endometriosis at this time. A laparoscopy allows your doctor to look inside your belly at your pelvic organs with a special lens to identify the endometriosis implants. Other tests that may be ordered before a laparoscopy might include blood tests, vaginal cultures to check for infection, or imaging such as ultrasound or MRI to make sure nothing else is going on.

Why have I heard that some adult women may have trouble getting pregnant?

If endometriosis is not diagnosed and treated early, it can grow and damage the fallopian tubes and ovaries. This can make it more difficult to get pregnant. Studies done at Boston Children’s Hospital have shown that if endometriosis is found and treated early, it does not tend to get worse over time.

Is there a cure for endometriosis?

While there is no cure for endometriosis, lifestyle changes along with surgery and medicine can keep the endometriosis from getting worse and harming your future fertility. It is very helpful to use a Pain and Symptom Tracker to record your pain for a while. Another method to locate and describe your pain is “Pain Mapping”. Make a copy of your Pain and Symptom Tracker and Pain Mapping worksheets, fill them out, and bring them with you to your appointments. These tools will help you explain your pain to your medical team. There are also special apps you can download that can help you record your symptoms and treatments.

Ways to help you describe pelvic pain:

• Type (sharp, dull, burning, aching, crampy)
• Location (where the pain is)
• Duration (how long the pain lasts)
• Intensity (on a scale of 1–10, how “bad” the pain is)

What kinds of treatment are available?

Once a diagnosis of endometriosis has been made, treatment falls into the following categories.

Observation: After an evaluation and before beginning hormonal therapy, you and your gynecology (GYN) team may decide to keep track of your symptoms and try mild pain medicine. This is usually the first step for people with premenarcheal endometriosis (who have not had their first period). Observation is generally not recommended for people who have already experienced their periods because the disease can progress after surgery unless medications are continued.

Medical suppression: Hormonal treatments containing progestins with or without estrogen help prevent the progression of disease and relieve symptoms. Estrogen-progestin therapies include the birth control pill, patch, and the ring. Progestin-only pills may come in three forms:  a pill pack as Norethindrone 0.35mg, a pill pack as Drospirenone 4mg, or as a regular pill that comes in a bottle called Norethindrone acetate (Aygestin®). The dose of Aygestin® can be adjusted for your body to stop your pain and bleeding. It is important to mention that Norethindrone acetate (Aygestin ®) is not an approved form of birth control, meaning it will NOT protect you against pregnancy. Since the medication is not considered a method of contraception, you may see a co-pay when picking up the prescription from your pharmacy. Other options include Depot Provera (injections every three months), or the levonorgestrel intrauterine device (Mirena®), which can stay in the uterus for up to 8 years.

Another class of medications include GnRH agonists, such as Leuprolide acetate (Lupron–Depot® or Synarel), and a GnRH antagonist known as Elagolix. These medications work by by shutting off hormones made by the ovaries and temporarily stops menstruation (periods). The use of GnRH therapies lower your body’s estrogen level (one of the hormones that causes your body to have periods).

Surgery: Visible endometriosis will be destroyed with heat (ablation using electric cautery or laser) or cut out (excision using a scissor, laser, or cautery) at the time of laparoscopy. Studies have shown that deeply growing lesions of endometriosis should be excised.  Most teens have superficial endometriosis that can be destroyed with destruction instead of excising in order to decrease the risk of adhesion (scar tissue) formation. After this procedure, many people find relief from symptoms. Most say that their pain is better, but not completely gone. Unfortunately, there is no cure for endometriosis at this time.  It is possible that some young people may experience pain again.

Lifestyle changes: Dealing with chronic pelvic pain can be challenging. Exercising often helps to relieve or lessen pelvic pain and menstrual cramps. Eating a healthy and balanced anti-inflammatory diet and getting 8-9 hrs of sleep every night will also help your body manage pain. Practicing relaxation techniques such as yoga and meditation help to ease pain too.

Pain treatment services: If you do not have relief from your symptoms, your gynecologist may refer you to a pain treatment program for an evaluation. Following an evaluation, services such as biofeedback, pelvic floor physical therapy, acupuncture and exercise programs may be offered.

Complementary medicine: Acupuncture, use of a Transcutaneous Electrical Nerve Stimulation (TENS) Unit, herbal remedies, homeopathy, and healing touch are popular adjunct approaches to medical treatment. Many of these therapies can be helpful, however not every complementary therapy has been scientifically proven to be safe and effective. Research studies are limited. Before experimenting with any alternative therapy, talk to your gynecologist about this and make sure that you are working with a licensed provider.

What else do I need to know about endometriosis?

• Young people CAN suffer from symptoms of endometriosis. Medical studies have found this disease in teenagers and young children.
• Chronic pelvic pain is NOT normal. Most young peoplehave no or mild to moderate menstrual cramps one or two days a month. If you are absent from school or work because of pelvic pain or menstrual cramps, call your gynecology office.
• Endometriosis occurs in peopleof ALL races.
• Endometriosis is NOT a STI (sexually transmitted infection).
• Getting pregnant does NOT cure this disease but may improve symptoms for some women. Some peoplewith endometriosis who have had children continue to have pain.
• If your pain makes you feel at all disadvantaged compared to other young people, this is not normal. Don’t “normalize” your symptoms. If you don’t feel like you are equally capable as other young people your age (because of pelvic pain), you need to seek medical treatment.

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