Endometriosis: Dealing Day-to-Day

Reviewed By:
Joanne Poje Tomasulo, M.D., ACOG

According to the Centers for Disease Control and Prevention, more than 5 million women in the United States have endometriosis. This is about 10 to 15 percent of all women in their reproductive years. However, the exact incidence of the condition is likely even higher. This is because women without symptoms or fertility problems may have endometriosis without knowing it. Consequently, they may never seek diagnosis or treatment.

Endometriosis can have a drastic effect on your life. It is a leading cause of infertility and can sometimes cause severe pain. However, it is treatable. If you have had, have, or think you may have endometriosis, there are things you can do to help you deal with your condition, its consequences and its treatment. These include:

1. Be aware of the signs or symptoms of endometriosis.
If you have endometriosis, you may experience pelvic pain, especially during menstruation or just before it begins. You may also feel pain during intercourse or painful urination or bowel movements during menstruation. Some women experience chronic pelvic or lower back pain. You may have unusually heavy menstrual bleeding or you may bleed vaginally before your menstrual period. You may also notice blood in your urine or stool. You may also feel very tired and weary. Infertility is also a possible sign of endometriosis.

If you experience any of these symptoms, you should contact your doctor immediately for evaluation. The sooner endometriosis is diagnosed, the less time it has to cause any damage. You may also have more options in how it is treated. Endometriosis symptoms are shared by other common and unrelated conditions, including irritable bowel syndrome, ovarian cysts, interstitial cystitis and pelvic inflammatory disease. It is important to determine if your symptoms are caused by endometriosis or another condition.

2. Evaluate your plans of having children.
Women with mild or no symptoms who do not want to become pregnant may do nothing. Women who want children may be encouraged to try to become pregnant sooner rather than later because the negative effects of endometriosis on infertility may increase with age. Conservative surgery involves removing the endometrial implants while maintaining your reproductive organs. This way, you may still have children. However, many of the effective treatments for endometriosis, including hysterectomy, will make you unable to have children.

3. Take any medications exactly as prescribed.
If you are prescribed medications, whether they are pain relievers, hormones, or anything else, take them precisely as directed. Do not take more or fewer doses than your doctor recommends and do not stop taking your medications without your doctor's approval. If you are given specific direction for taking your medications, such as a particular time of day or taking them with a meal, follow them. Failing to comply with your doctor's orders when taking your medications can make them less effective or worsen their side effects. Not following your doctor's orders with many medications may also adversely affect your health in other ways, as well.

4. If you are on hormonal treatment, do not risk pregnancy.
All forms of hormonal treatments can affect an embryo, so you must take steps to avoid pregnancy during the treatments. Because birth control pills may not be used in combination with the other hormonal treatments, you should use another method of birth control, such as a condom, with any of these treatments. When the treatments are complete and menstruation returns, you may attempt to become pregnant. You may experience a recurrence of endometriosis symptoms after hormonal treatments stop.

5. Know your risks.
The risk for endometriosis begins with the onset of menstruation and increases with age, until menopause. If you have not given birth and have not had your menstrual cycle interrupted by pregnancy, you are at greater risk. If you have a mother or sister with endometriosis, you are at greater risk. If your menstrual cycles are shorter than 27 days or your periods last longer than eight days, you are also at greater risk. While it may be impossible to prevent endometriosis, you and your doctor can evaluate your odds of developing the disease. If you know that you are at risk for it, you can be more alert for any signs that it has developed. That way, you can catch and treat it early.

6. Consider the consequences of treatment options.
Although hysterectomy may alleviate the symptoms of endometriosis, the surgical menopause it induces will create other symptoms such as hot flashes and vaginal dryness. Surgical menopause caused by hysterectomy causes more severe symptoms than natural menopause. After a hysterectomy, you will usually be prescribed estrogen replacement therapy. Other treatments, especially hormonal therapies, produce a chemical menopause with similar symptoms.

7. Speak to your doctor about the risk of infertility.
If you have endometriosis and want to become pregnant, you should consult your gynecologist to determine if you have sustained any damage that will affect fertility. Infertility is a diminished ability to conceive or become pregnant within one year and should not be confused with sterility. Sterility is an inability to become pregnant.

Many women can overcome infertility through the use of a variety of procedures. Some of these involve implantation of the fertilized egg into the woman's uterus. This may help to get around infertility due to damage to your fallopian tubes. Such techniques are known as assisted reproductive technology. However, these treatments are not for everyone. They can be time-consuming, expensive and emotionally and physically draining. In many cases, they may not be successful.

If you have become infertile following the development of endometriosis or its treatment and do not wish to attempt any of the various fertility procedures -- or find that they do not work -- you may often have a child through adoption.