Endometriosis is a chronic disease that affects reproductive age women, usually while they are still teenagers. It plagues more than five million women in the United States every year. Endometriosis causes tissue that is similar to your endometrial lining (inside your uterus) to build up on the outside of your uterus. Just like your endometrium, this tissue can shed during menstruation, causing extreme pain and irregular bleeding when it gets trapped in areas that have no way out.

If you suffer from endometriosis, tissue can grow on your ovaries, fallopian tubes, uterine wall, and can burrow into numerous “nooks and crannies” in the pelvis. Frequent areas of involvement include the ligaments supporting the uterus, the rectum, and the bladder. This tissue builds up during menstruation and begins to shed, only the blood has no way of exiting the body. As a result, this discarded blood and tissue remains in the body, causing pain, scar tissue, and organ adhesions.

Although the symptoms of endometriosis can be extreme, many doctors overlook these signs as just a regular part of a woman's menstrual cycle. As a result, it can often be difficult to get a proper diagnosis quickly. In fact, studies have found that it can take as long as nine years before a woman is officially diagnosed with endometriosis. Many women are told that they irritable bowel disease (IBS) because their bowel function is altered.

To help speed up the diagnostic process, knowing just what to say to your doctor about your endometriosis can help you get a diagnosis sooner.

Endometriosis and Infertility

Unfortunately, many women who suffer with endometriosis also suffer from infertility. In fact, between 30 and 40 percent of infertile women have endometriosis. Women with the cluster of pelvic pain, painful periods, and infertility may have a greater than 80 percent chance of having it. This is because endometriosis can result in severe scarring of the reproductive and pelvic organs and effect all these processes.

As the tissue that grows on the ovaries, fallopian tubes, and uterine wall sheds, scar tissue can form. This can impede the movement of or completely obstruct the fallopian tubes, disrupt the relationships of your pelvic organs, or interfere with ovulation. Endometrial tissue can also cause pelvic adhesions, in which organs vital to reproduction stick together. The swelling and inflammation around these areas of disease also contributes to the infertility since the fluids released are hostile to eggs and sperm. As a result of this, many women suffering from endometriosis often cannot become pregnant.

What Causes Endometriosis?

Unfortunately, the cause of endometriosis is not completely understood, though a number of possible reasons for the disease have been addressed. Possible causes of endometriosis include:

Genetics
Endometriosis appears to run in families, which suggests a genetic component to the disease.

Menstrual Fluid Backup
Endometriosis may be the result of a backup of menstrual fluids. If menstrual fluids back up through the fallopian tubes, it is possible that the tissue can take root outside of the uterus. This backup of menses (retrograde menstruation) is undoubtedly a cause of some endometriosis. This is sometimes called Sampson’s Hypothesis. This may the milder type of the disease however, and this “flavor” of endometriosis may be more sensitive to simple, common treatments such as birth control pills.

Problems with Lymph and Blood Systems
Endometriosis may be caused by a problem with your lymph or blood systems. These symptoms are responsible for distributing endometrial tissues around the body. This may explain why doctors are occasionally surprised to see rare cases of endometriosis in the lungs!

Spontaneous conversion of pelvic lining cells
This theory (called coelomic metaplasia) is gaining more traction in recent years. Stem cells within the tissues that coat the pelvic organs may develop a mind of their own and begin to behave like and convert to endometrial cell types. These cells may be particularly aggressive since they can make their own estrogen (that is, they can fuel themselves), and they may resist treatment with progesterone-like hormones. This type of aggressive endometriosis may be the kind that burrows and eats into pelvic structures and causes much of the pain and grief associated with the severe forms of the condition. This may be the type of disease that needs to be physically removed by surgery.

Symptoms of Endometriosis

Severe pelvic pain is the most obvious symptom of endometriosis. In fact, if you have to miss one or two days of work or school per month (generally curled up in bed during your period), your risk of the disease may be greater than 70 percent, just with these symptoms. If you are experiencing any type of severe abdominal pain or pain with intercourse it is important for you to visit with your health care provider. However, not all women suffer from these terrible cramps. Other common symptoms of endometriosis include:

• painful periods
• pain during ovulation
• deep, stabbing pain during intercourse
• painful bowel movements
• chronic constipation alternating with loose, frequent stools with your menstrual flow
• painful urination
• heavy bleeding or bleeding between periods

In order to avoid further damage to your reproductive organs, it is necessary to get treatment for your endometriosis as soon as possible. There is no cure for the condition, however, a number of excellent treatments are available to reduce your discomfort and preserve your fertility.

Medical Treatments

There are a variety of medications designed to help reduce the symptoms of endometriosis. Commonly-prescribed medications include pain killers, hormonal contraceptives, Gn-RH Agonists (synthetic forms of gonadatropin-releasing hormone that helps control estrogen production in the body), progestins and danazol (a testosterone-like steriod).

Surgical Treatments

Sometimes surgery is required to help reduce or eliminate endometriosis symptoms. Various surgeries can be performed, which is usually an operative laparoscopy. However, surgery may compromise future fertility if there are any complications. It is imperative that the surgeon who does your surgery be experienced with advanced endoscopic techniques!

Most gynecologists are happy to do laparoscopies, but the quality of the results varies tremendously. Ask if your surgeon has a large experience with aggressively “cyto-reducing” endometriosis lesions. In English: can they go in and get the vast majority of the disease the first time?

Do they have the skill to remove the disease wherever it may be found? If not, find another surgeon.

More women than is necessary wind up having ‘scope after ‘scope with little to show for it but pain, scar tissue, and grief. It is not uncommon for young women to show up in the Reproductive Endocrinologist’s (RE) office after half dozen or more surgeries! Rather than suffer this, ask a lot of questions of your surgeon before you undergo the surgery; if possible start with an RE or other experienced endometriosis surgeon first. Insist on a referral if you have to.

Treating the Infertility

If you are suffering from endometriosis-related infertility, you will likely be placed on some type of suppressive medical therapy. Women with the disease should either be actively trying to conceive, or be taking suppressive medications. This will help to slow pelvic bleeding and preserve fertility.

Do not allow endometriosis to get the upper hand. IUI or IVF is often recommended in order to maximize the chance pregnancy.

IVF may be suggested if a large amount of scar tissue is known to be present.

An IUI will maximize the possibility that large numbers of sperm will be able to reach their mark.

Superovulation (that is making extra eggs per month) is often recommended as well so that the chances of an egg getting through the hostile endometriosis environment are improved.