Endometriosis

The simplest explanation of endometriosis was given on a Creating a Family Radio Show:

“Normal uterine tissue in the wrong place that causes inflammation and scarring. Endometriosis develops when tissue that is similar to the tissue that lines the uterus (endometrium tissue) is found outside the uterus. This tissue can end up anyplace in the body, but usually stays fairly near the uterus in the abdomen, and can be found on the ovaries, fallopian tubes, and ligaments that support the uterus. It can also be found in the area between the vagina and rectum; the outer surface of the uterus; the lining of the pelvic cavity; and even on the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars. The presence of these endometrium growths outside the uterus is called endometriosis.”

Endometrium tissue, wherever it is found in the body, responds the same to the body’s monthly cycle of hormones: it builds up, breaks down, and sheds off. If this happens where it should – in the uterus – the tissue and blood flow out from the uterus through the vagina which is called menstruation.  When the endometrium is outside the uterus, it also responds to the body’s hormone signals by swelling and then shedding. This tissue and blood have no natural outlet, resulting in internal bleeding, inflammation, pain, scars, and adhesions. In short, it results in a mess.

That is a hard question to answer. Some researchers think that 100% of women at some point have endometrium tissue outside of the uterus, but in the vast majority (85%), the immune system will shut down the growth of this misplaced tissue with no resulting problems. In the remaining 10-15%, this does not happen and they will have a diagnosis of endometriosis. Endometriosis is a disease that affects about 5½ million women (and girls) in the US.

• Cramps
• Irregular menstrual flow, primarily in the form of spotting, although sometimes as heavy flow
• Bumps and lumps felt during a pelvic exam or seen on a sonogram
• Pain during sex
• Pain during urination, especially during menstruation
• Painful bowel movement, especially during menstruation
• Gastrointestinal problems such as constipation, diarrhea, or bloating
• Infertility

• Fatigue
• Allergies
• Chemical sensitivities

The cause of endometriosis is unknown, but here are the leading theories:

• Backed-Up Menstrual Flow (a.k.a The Retrograde Menstruation Theory): This theory suggests that during menstruation, some of the menstrual tissue backs up in the uterus and into the fallopian tubes. From the fallopian tubes, it migrates, implants in the abdomen, and grows. Some experts believe that this happens to a certain extent in all women and that some other imbalance, such as an immune system problem or a hormonal problem, must also be present in a woman with endometriosis to allow this tissue to grow.
• Embryonic Theory: Perhaps during embryo formation, tissue destined for the uterus is misplaced. Another variation of this theory is that for some reason, some of the tissue in a woman with endometriosis retains the ability to transform into different types of tissue – in this case into endometrium tissue.
• Defective Immune System Theory: Under this theory, something interferes with the immune system to cause it not to function properly. Environmental toxins and stress are factors that are suspected of impairing the immune system.
• Lymph System Out of Whack Theory: The renegade endometrium tissue is spread from the uterus to other parts of the body through the lymph system or the blood system.
• Genetic Theory: As the name implies, this theory suggests that there is a genetic connection to endometriosis or at the very least, some families may be predisposed to endometriosis.
• Surgical Transplantation Theory: Endometrium tissue is commonly found in abdominal scars of women with endometriosis, which begs the question of was it accidentally misplaced during surgery. Since plenty of women have endometriosis but have never had abdominal surgery, this seems a bit flimsy to me.
• Environmental Theory: Some believe that environmental toxins, such as dioxins, might be responsible for endometriosis.

There is no one staging system that is used by all doctors for determining the severity or degree of endometriosis. With the most common staging/rating system for endometriosis, a stage is determined by a weighted point system based on the severity, location, amount, depth, and size of endometrium growths. The American Society of Reproductive Medicine has issued guidelines on classifying these stages, complete with handy diagrams.

• Stage 1 – minimal disease, superficial and filmy adhesions
• Stage 2 – mild disease, superficial and deep endometriosis
• Stage 3 – moderate disease, deep endometriosis, and adhesions
• Stage 4 – severe disease, deep endometriosis, dense adhesion

There is not necessarily a direct correlation between the stage of endometriosis and the level of pain, infertility, or other symptoms.

Although women with endometriosis have a slightly increased risk for cancers of the ovaries, breast, non-Hodgkin’s lymphoma, endocrine system, and brain, it is important to keep this risk in perspective. One study found that:

“The overall risk of cancer does not increase after endometriosis, and where there are slightly increased risks they are in some of the less common cancers. . . We cannot say that endometriosis causes cancer, only that patients with endometriosis have a slightly higher risk of some kinds of cancers than the general female Swedish population. The true connection between cancer and endometriosis is not known.”

On the Creating a Family show, Dr. Martin said that the risk of ovarian cancer for a woman without endometriosis up to age 65 is 1%, and for women with endometriosis it is 1.3%.

We discussed this at length on the Creating a Family show with Dr. Martin, a reproductive endocrinologist, president of the Fertility Institute, and Professor in the Department of Obstetrics and Gynecology at the University of Tennessee Health Science Center. It is hard to interpret statistics on endometriosis because of how endometriosis affects fertility depends on the severity and location of the endometrium tissue. Nonetheless, the statistics are mostly fairly encouraging. When the diagnosis of endometriosis is made before trying to conceive, 90% of women will become pregnant within one year of trying. Once a woman is having trouble conceiving, her chances of success without infertility treatment depends on the presence and severity of tubal/ovarian adhesions. How endometriosis affects the odds of conception with fertility treatment depends on if the endometriosis affects the ovaries. Pregnancy is not a cure for endometriosis. Symptoms may abate during your pregnancy, but will likely return after pregnancy if you have a more advanced stage of endometriosis.

There is no real consensus on the best way to treat endometriosis, in part because the cause of endometriosis is unknown and in part because it depends on the woman’s symptoms and her desires for future pregnancy. The options include:

• Observation with no medical intervention, other than pain control or anti-inflammatory drugs.
• Hormone treatment to reduce the estrogen that feeds the growth of endometrium tissue.
• Surgery to remove the endometrial growths and adhesions. There are several options within the surgical option:
  • Laparoscopic or abdominal incision
  • Coagulation (burning) or incision (cutting it out)
  • Combined treatment

• Eating a healthy diet of low refined carbohydrates and limiting caffeine, sugar, preservatives, additives, red meats and processed foods have been shown to be helpful.
• An anti-inflammatory diet is helpful for some women.
• Exercise
• Herbs such as chasteberry, evening primrose oil, cat’s claw, bromelain, or turmeric.  Talk with a trained herbalist about which ones are best, dosage, and preparation. Since these herbs have an effect on hormones, you must tell your doctor about all the herbs you are taking.
• Acupuncture (with a trained practitioner)
• Bio-Feedback

It is not necessary to go to a reproductive endocrinologist for treatment. In fact, some REs do not treat endometriosis at all. If you are not comfortable with the level of endometriosis expertise of your Ob/Gyn and want to find a doctor that specializes in the diagnosis and treatment of endometriosis, try:

• Calling a nearby infertility clinic and see who they recommend.
• Contact the Endometriosis Association and ask about members in your area.
• Ask support group members who they like.