Endometriosis is a disorder in which tissue similar to the tissue that forms the lining of your uterus grows outside of your uterine cavity. The lining of your uterus is called the endometrium. Endometriosis, sometimes called “endo,” is a common health problem in women. It gets its name from the word endometrium, the tissue that normally lines the uterus or womb.
Endometriosis occurs when endometrial tissue grows on your ovaries, bowel, and tissues lining your pelvis. It’s unusual for endometrial tissue to spread beyond your pelvic region, but it’s not impossible. Endometrial tissue growing outside of your uterus is known as an endometrial implant.
The hormonal changes in your menstrual cycle affect the misplaced endometrial tissue, causing the area to become inflamed and painful. This means the tissue will grow, thicken, and break down. Over time, the tissue that has broken down has nowhere to go and becomes trapped in your pelvis.
This tissue trapped in your pelvis can cause:
- Scar formation
- Adhesions, in which tissue binds your pelvic organs together
- Severe pain during your periods
- Fertility problems
Endometriosis is a common gynecological condition, affecting up to 10 percent of women. You’re not alone if you have this disorder.
The symptoms of endometriosis vary. Some women experience mild symptoms, but others can have moderate to severe symptoms. The severity of your pain doesn’t indicate the degree or stage of the condition. You may have a mild form of the disease yet experience agonizing pain. It’s also possible to have a severe form and have very little discomfort.
Pelvic pain is the most common symptom of endometriosis. You may also have the following symptoms:
- Painful periods
- Pain in the lower abdomen before and during menstruation
- Cramps one or two weeks around menstruation
- Heavy menstrual bleeding or bleeding between periods
- Pain following sexual intercourse
- Discomfort with bowel movements
- Lower back pain that may occur at any time during your menstrual cycle
You may also have no symptoms. It’s important that you get regular gynecological exams, which will allow your gynecologist to monitor any changes. This is particularly important if you have two or more symptoms.
The cause of endometriosis is unknown. One theory is that the endometrial tissue is deposited in unusual locations by the retrograde flow of menstrual debris through the Fallopian tubes into the pelvic and abdominal cavities. The cause of this retrograde menstruation is not clearly understood. It is clear that retrograde menstruation is not the only cause of endometriosis, as many women who have retrograde menstruation do not develop the condition.
Another possibility is that areas lining the pelvic organs possess primitive cells that are able to develop into other forms of tissue, such as endometrium. (This process is termed coelomic metaplasia.)
It is also likely the direct transfer of endometrial tissues at the time of surgery may be responsible for the endometriosis implants occasionally found in surgical scars (for example, episiotomy or Cesarean section scars). Transfer of endometrial cells via the bloodstream or lymphatic system is the most plausible explanation for the rare cases of endometriosis that are found in the brain and other organs remote from the pelvis.
Finally, there is evidence that some women with endometriosis have an altered immune response in women with endometriosis, which may affect the body’s natural ability to recognize ectopic endometrial tissue.
Endometriosis has four stages or types. It can be any of the following:
Different factors determine the stage of the disorder. These factors can include the location, number, size, and depth of endometrial implants.
Stage 1: Minimal
In minimal endometriosis, there are small lesions or wounds and shallow endometrial implants on your ovary. There may also be inflammation in or around your pelvic cavity.
Stage 2: Mild
Mild endometriosis involves light lesions and shallow implants on an ovary and the pelvic lining.
Stage 3: Moderate
Moderate endometriosis involves deep implants on your ovary and pelvic lining. There can also be more lesions.
Stage 4: Severe
The most severe stage of endometriosis involves deep implants on your pelvic lining and ovaries. There may also be lesions on your fallopian tubes and bowels.
The symptoms of endometriosis can be similar to the symptoms of other conditions, such as ovarian cysts and pelvic inflammatory disease. Treating your pain requires an accurate diagnosis.
Your doctor will perform one or more of the following tests:
Your doctor will note your symptoms and personal or family history of endometriosis. A general health assessment may also be performed to determine if there are any other signs of a long-term disorder.
During a pelvic exam, your doctor will manually feel your abdomen for cysts or scars behind the uterus.
Your doctor may use a transvaginal ultrasound or an abdominal ultrasound. In a transvaginal ultrasound, a transducer is inserted into your vagina.
Both types of ultrasound provide images of your reproductive organs. They can help your doctor identify cysts associated with endometriosis, but they aren’t effective in ruling out the disease.
The only certain method for identifying endometriosis is by viewing it directly. This is done by a minor surgical procedure known as a laparoscopy. Once diagnosed, the tissue can be removed in the same procedure.
Having issues with fertility is a serious complication of endometriosis. Women with milder forms may be able to conceive and carry a baby to term. According to the Mayo Clinic, about 30 – 40 percent of women with endometriosis have trouble getting pregnant.
Medications don’t improve fertility. Some women have been able to conceive after having endometrial tissue surgically removed. If this doesn’t work in your case, you may want to consider fertility treatments or in vitro fertilization to help improve your chances of having a baby.
You might want to consider having children sooner rather than later if you’ve been diagnosed with endometriosis and you want children. Your symptoms may worsen over time, which can make it difficult to conceive on your own. You’ll need to be assessed by your doctor before and during pregnancy. Talk to your doctor to understand your options.
Even if fertility isn’t a concern, managing chronic pain can be difficult. Depression, anxiety, and other mental issues aren’t uncommon. Talk to your doctor about ways to deal with these side effects. Joining a support group may also help.
Endometriosis Risk factors
According to Johns Hopkins Medicine, about 2 to 10 percent of childbearing women in the United States between the ages of 25-40 have endometriosis. It usually develops years after the start of your menstrual cycle. This condition can be painful but understanding the risk factors can help you determine whether you’re susceptible to this condition and when you should talk to your doctor.
Women of all ages are at risk for endometriosis. It usually affects women between the ages of 25 and 40, but symptoms can begin at puberty.
Talk to your doctor if you have a family member who has endometriosis. You may have a higher risk of developing the disease.
Pregnancy may temporarily decrease the symptoms of endometriosis. Women who haven’t had children run a greater risk of developing the disorder. However, endometriosis can still occur in women who’ve had children. This supports the understanding that hormones influence the development and progress of the condition.
Talk to your doctor if you have problems regarding your period. These issues can include shorter cycles, heavier and longer periods, or menstruation that starts at a young age. These factors may place you at higher risk.
Endometriosis prognosis (outlook)
Endometriosis is a chronic condition with no cure. We don’t understand what causes it yet. But this doesn’t mean the condition has to impact your daily life. Effective treatments are available to manage pain and fertility issues, such as medications, hormone therapy, and surgery. The symptoms of endometriosis usually improve after menopause.
Nonsteroidal anti-inflammatory drugs (NSAIDs)
Nonsteroidal anti-inflammatory drugs or NSAIDs (such as ibuprofen or naproxen sodium) are commonly prescribed to help relieve pelvic pain and menstrual cramping. These pain-relieving medications have no effect on the endometrial implants or the progression of endometriosis. However, they do decrease prostaglandin production, and prostaglandins are well known to have a role in the causation of pain.
As the diagnosis of endometriosis can only be definitively confirmed with a biopsy, many women with complaints suspected to arise from endometriosis are treated for pain first without a firm diagnosis being established. Under such circumstances, NSAIDs are commonly used as a first-line empirical treatment. If they are effective in controlling the pain, no other procedures or medical treatments are needed. If they are ineffective, additional evaluation and treatment will be necessary.
Since endometriosis occurs during the reproductive years, many of the available medical treatments for endometriosis rely on the interruption of the normal cyclical hormone production by the ovaries. These medications include GnRH analogs, oral contraceptive pills, and progestins.
Gonadotropin-releasing hormone analogs (GnRH analogs)
Gonadotropin-releasing hormone analogs (GnRH analogs) have been effectively used to relieve pain and reduce the size of endometriosis implants. These drugs suppress estrogen production by the ovaries by inhibiting the secretion of regulatory hormones from the pituitary gland. As a result, menstrual periods stop, mimicking menopause. Nasal and injection forms of GnRH agonists are available.
The side effects are a result of the lack of estrogen and include:
- Hot flashes,
- Vaginal dryness,
- Irregular vaginal bleeding,
- Mood alterations,
- Fatigue, and
- Loss of bone density (osteoporosis).
Fortunately, by adding back small amounts of progesterone in pill form (similar to treatments sometimes used for symptom relief in menopause), many of the annoying side effects due to estrogen deficiency can be avoided. “Add back therapy” is a term that refers to this modern way of administering GnRH agonists along with progesterone in a way to ensure compliance by eliminating most of the unwanted side effects of GnRH therapy.
Progestins, for example, medroxyprogesterone acetate (Provera, Cycrin, Amen), norethindrone acetate, and norgestrel acetate (Ovrette) are more potent than birth control pills and are recommended for women who do not obtain pain relief from or cannot take a birth control pill. They may be helpful in women who do not respond or cannot take (for medical reasons) oral contraceptives.
Side effects are more common and include:
- Breast tenderness
- Weight gain
- Irregular uterine bleeding
Because the absence of menstruation (amenorrhea) induced by high doses of progestins can last many months following cessation of therapy, these drugs are not recommended for women planning pregnancy immediately following cessation of therapy.
Birth control pills (oral contraceptives)
Oral contraceptive pills (estrogen and progesterone in combination) are also sometimes used to treat endometriosis. The most common combination used is in the form of the oral contraceptive pill (OCP). Sometimes women who have severe menstrual pain are asked to take the OCP continuously, meaning skipping the placebo (hormonally insert) portion of the cycle. Continuous use in this manner will generally stop menstruation altogether. Occasionally, weight gain, breast tenderness, nausea, and irregular bleeding may occur. Oral contraceptive pills are usually well-tolerated in women with endometriosis.
Aromatase inhibitors and other drugs
A more current approach to the treatment of endometriosis has involved the administration of drugs known as aromatase inhibitors (for example, anastrozole [Arimidex] and letrozole [Femara]). These drugs act by interrupting local estrogen formation within the endometriosis implants themselves. They also inhibit estrogen production within the ovary and adipose tissue. Research is ongoing to evaluate the effectiveness of aromatase inhibitors in the management of endometriosis. Aromatase inhibitors can cause significant bone loss with prolonged usage. In premenopausal women, these drugs must be taken in combination with other drugs because of the drug’s effect on the ovaries.
Other drugs to treat endometriosis and pain
Danazol (Danocrine) is a synthetic drug that creates a high androgen (male type hormone) and low estrogen hormonal environment by interfering with ovulation and ovarian production of estrogen. Eighty percent of women who take this drug will have pain relief and shrinkage of endometriosis implants, but up to 75% of women develop significant side effects from the drug. These include:
- Weight gain
- Edema (swelling)
- Breast shrinkage
- Oily skin
- Male pattern hair growth (Hirsutism)
- Deepening of the voice
- Hot flashes
- Changes in libido
- Mood alterations
Except for the voice changes, all of these side effects are reversible. In some cases, the resolution of the side effects may take many months. Women with certain types of liver, kidney, or heart conditions should not take Danazol. This product is rarely used.
Endometriosis Frequently Asked Questions
What is endometriosis?
Endometriosis, sometimes called “endo,” is a common health problem in women. It gets its name from the word endometrium, the tissue that normally lines the uterus or womb. Endometriosis happens when tissue similar to the lining of the uterus grows outside of your uterus and on other areas in your body where it doesn’t belong.
Most often, endometriosis is found on the:
- Fallopian tubes
- Tissues that hold the uterus in place
- The outer surface of the uterus
Other sites for growths can include the vagina, cervix, vulva, bowel, bladder, or rectum. Rarely, endometriosis appears in other parts of the body, such as the lungs, brain, and skin.
Can surgery cure endometriosis?
Surgical treatment for endometriosis can be useful when the symptoms are severe or there has been an inadequate response to medical therapy. Surgery is the preferred treatment when there is an anatomic distortion of the pelvic organs or obstruction of the bowel or urinary tract. It may be classified either as conservative, in which the uterus and ovarian tissue are preserved, or definitive, which involves hysterectomy (removal of the uterus), with or without removal of the ovaries.
Conservative surgery is typically performed laparoscopically. Endometrial implants may be excised or destroyed by different sources of energy (e.g. laser, electrical current). If the disease is extensive and anatomy is distorted, laparotomy may be required.
While surgical treatments can be very effective in the reduction of pain, the recurrence rate of endometriosis following conservative surgical treatment has been estimated to be as high as 40%. Many doctors recommend ongoing medical therapy following surgery in an attempt to prevent symptomatic disease recurrence.
How common is endometriosis?
Endometriosis is a common health problem for women. Researchers think that at least 11% of women, or more than 6 ½ million women in the United States, have endometriosis.
Which specialties of doctors treat endometriosis?
Endometriosis is most commonly treated by obstetrician-gynecologists (OB-GYNs).
Who gets endometriosis?
Endometriosis can happen in any girl or woman who has menstrual periods, but it is more common in women in their 30s and 40s.
You might be more likely to get endometriosis if you have:
- Never had children
- Menstrual periods that last more than seven days
- Short menstrual cycles (27 days or fewer)
- A family member (mother, aunt, sister) with endometriosis
- A health problem that blocks the normal flow of menstrual blood from your body during your period
What is the prognosis for a woman with endometriosis?
Endometriosis is most commonly a disease of the reproductive years, and symptoms usually go away after a woman reaches menopause. For women experiencing symptoms, a number of therapies are available to provide relief. For infertility associated with endometriosis, treatments are also available to help increase a woman’s chances of conception.
Can endometriosis be prevented?
Because the cause of endometriosis is poorly understood, there are no known ways to prevent its development.
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