Endometriosis Questions and Answers

Q:  What causes endometriosis?

A:  The most widely accepted cause of the disease is retrograde menstruation. That means tissue from the uterine lining, called endometrial tissue, flows backward through a woman's fallopian tubes while she is menstruating. The tissue gets trapped and can't leave the body the way the rest of the endometrial lining does during menstruation. However, no matter where it is in the body, endometrial tissue still responds to hormonal stimulation each month. Endometriosis implants can become inflamed, bleed, and develop into scar tissue. When the implants are attached to organs in the pelvic and abdominal cavities severe pain, infertility and other problems may result. There are other theories about what causes endometriosis, including a deficient immune system response, hormonal imbalances or environmental causes. Experts also have found strong evidence to suggest a genetic link to the disease.

Q:  What does endometriosis feel like?

A:  Pain in the pelvic region is the most common symptom of the disease. Though some women who have endometriosis do not experience any symptoms. The degree of pain ranges from very mild to severe pain that can make it impossible for a woman to go about her normal life. Some women describe the pain as sharp and burning. It may last all month long, but is usually worse during menstruation, with deep penetration during sex, or with bowel movements. Some women report no pain at all. Other symptoms may include:

  • abnormal menstrual bleeding
  • severe menstrual cramps
  • pelvic pain distinct from menstrual cramps
  • backache
  • pain during or after sexual penetration
  • painful bowel movements
  • pain with exercise
  • painful pelvic examination

Q:  How can I be sure I'm being diagnosed correctly if pain associated with the disease can often be confused with other medical problems?

A:  If laparoscopy is not performed, sometimes your health care professional will prescribe hormonal treatments assuming endometriosis exists. If there is a response and decreased pain, there is an assumption that endometriosis was indeed the cause of the pain. However, endometriosis cannot be definitively diagnosed without laparoscopy and biopsy. The American College of Obstetricians and Gynecologists (ACOG) recommends a peritoneal (tissue) biopsy to confirm the presence of endometrial lesions.

Q:  Can I get pregnant if I have endometriosis?

A:  Yes, you can. Nearly all women who have endometriosis are fertile, and there are many women who have the disease and go on to have children. Endometriosis, unless it blocks the Fallopian tubes, is generally not thought to be an absolute barrier to contraception.

Q:  Is there any way I can prevent endometriosis?

A:  Unfortunately, the answer is probably not. Researchers cannot say with certainty what causes some women to get the disease while other women do not. Only 10 percent to 15 percent of all women in their reproductive years suffer from endometriosis.

Q:  What options are available to treat endometriosis?

A:  The most common medical therapies for endometriosis are hormonal contraceptives and other hormonal regimens, such as GnRH agonists (gonadotropin releasing hormone drugs), that control hormonal stimulation of the endometrial tissue. Danazol, a synthetic androgen, is also used, but it can cause some undesirable side effects, including weight gain, hirsutism (hair growth) and lowering of the voice. Surgical treatments range from removing only the endometrial implants by means of laparoscopy to removing the uterus and ovaries.

Q:  How do I know which is the best treatment option for my case of endometriosis?

A:  It's tough to know which is the best course of treatment for you, especially since no comparative studies have been conducted to determine which approach is better. There are pros and cons for all treatment options. Up to 90 percent of women with the disease will be helped by medical therapies. Oral contraceptives may be used indefinitely to manage symptoms. The goal of surgery is to remove the endometriosis, restore the normal anatomical relationship of the tissue, and remove any scar tissue caused by the condition. Most women choose laparoscopy if they decide to go with surgery. Many women try to avoid a hysterectomy if they can, since it's a radical procedure that will leave them infertile, with no guarantee that their endometriosis will be gone forever.

Because of the risks associated with surgery, the usual course of treatment is to proceed from the least invasive or risky to the more invasive treatment. That means medical treatment is most often attempted first. If no success occurs after several trials of different types of medications, then laparoscopy may be recommended with hysterectomy as a last resort for most women depending on their age and their wish to preserve fertility.