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Where to Start for Information on
Endometriosis:
What is it? The best explanation I’ve seen
or heard was on the
June 24, 2009 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 June 24, 2009 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
June 24 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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Resources:
- Endometriosis - Basic overview and diagram by
Ferring Fertility
- Endometriosis.org 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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