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Where to Start
Endometriosis and Cancer
Endometriosis and Infertility
Finding a Doctor

Where to Start for Information on Endometriosis:

What is it? The best explanation I've seen or heard was on the Creating a Family Radio Show: Normal 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 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 is should- in the uterus- it's called menstruation, and all is well. The tissue and blood flows out from the uterus through the vagina. 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 has no natural outlet, resulting in internal bleeding, inflammation, pain, scars, and adhesions. In short, it results in a mess. If you are particularly curious and want to see pictures taken during laparoscopic surgery of what endometriosis actually looks like check these pictures out.
How common is Endometriosis? That's a hard question to answer. Some researchers think that 100% of woman 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 15% of woman this doesn't happen and they will have a diagnosis of endometriosis. Endometriosis is a disease that affects about 5 ½ million women (and girls) in the US.

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Primary Symptoms of Endometriosis:

  • 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 your period
  • Painful bowel movement, especially during your period
  • Gastrointestinal problems such as constipation, diarrhea, or bloating
  • Infertility

Less Frequent Symptoms:

  • Fatigue
  • Allergies
  • Chemical sensitivities

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Causes of Endometriosis:

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 and 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 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 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: This renegade endometrium tissue is spread from the uterus to other parts of the body through the lymph system or through 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. Some research on this theory can be found here.

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Stages of 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.

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Endometriosis and Cancer Risk:

Although women with endometriosis have a slight 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. A recent 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%.

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Endometriosis and Infertility

We discussed this at length on the Creating a Family show with Dr. Martin. It is hard to interpret any statistics that you may see because 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 a woman is trying to conceive, 90% of women will get pregnant within one year of trying. Once a woman is having trouble trying to conceive her chances of success without infertility treatment depends on the presence and severity of tubal/ovarian adhesions. How edometriosis 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.

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Treatment 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. The surgery option has several options:
    • Laparoscopic or abdominal incision
    • Coagulation (burning) or incision (cutting it out)
  • Combined treatment
  • Alternative Treatments used alone or in combination with standard medical treatment. The most comprehensive assessment of alternative treatments for endometriosis can be found at The Endometriosis Association

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How to Find a Doctor:

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 at support group members who they like

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Support Groups:

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  • Endometriosis - Basic overview and diagram by Ferring Fertility
  • is the mega source for all things endometriosis. Lots of information.
  • The Endometriosis Association Great place to start if you have endometriosis. They should be your first stop for more information. Join them as well to help find a cure.
  • Endo Resolved Great, easy to understand site with lots of information on treatments- both conventional and alternatives. Sign up for their newsletter.
  • World Endometriosis Research Foundation is dedicated to funding global research to help improve knowledge and treatment of endometriosis. This site provides information on current research, clinical trails, and other links and resources.
  • Endometriosis - The World Endometriosis Society launches first ever film to raise awareness of endometriosis. It encourages women to seek help early for symptoms to avoid infertility down the line.
  • National Support Organizations for Endometriosis

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