Endometriosis: Frequently Asked Questions
The following is a brief summary of frequently asked questions the ERC
receives from visitors inquiring about the disease. To obtain a
copy of more in-depth materials (including scientific references), such
as the ERC's Endometriosis Fact Sheet, please
us or visit
educational materials page
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What is Endometriosis?
Endometriosis is a disease in which tissue like the endometrium (the
lining inside the uterus which builds up and sheds each month during
menstruation) migrates outside the uterus to other areas of the body.
These implants continue to break down and bleed; the result is internal
bleeding, degeneration of blood and tissue shed from the growths,
inflammation of the surrounding areas, and formation of painful
adhesions and scar tissue. Endometriosis has been documented in
nearly every location of the body, including such remote and unusual
sites as the brain, sciatic nerve, lungs and even skin.
Endometriosis can cause debilitating pain and infertility, and despite
being one of the most common reasons for chronic pelvic pain, the
disease remains widely misunderstood.
Is Endometriosis curable?
There is currently no absolute cure for Endometriosis, but there are
several methods of treatment, which may alleviate some of the pain and
symptoms associated with it.
Will Endometriosis kill me?
Not likely. There have been documented cases of malignant
chances associated with Endometriosis and higher risks of certain
cancers in women with the disease, but Endometriosis itself is
classified as a benign illness.
What causes Endometriosis?
There are several theories, none of which have been proven. Following is
just a sample of common ones:
Retrograde menstruation (outdated theory which has
been disproved by many experts)
There are many other theories being investigated. Some
believe that it may actually be "a combination of several
What are some symptoms of Endometriosis?
The amount of pain associated with the disease is not related to the
extent or size of the implants. Some women with Endo have no symptoms,
others have debilitating pain and even infertility. Some fairly common
signs that may lead you to suspect Endo include - but are by no means
limited to - any of the following:
Fatigue, chronic pain, allergies and immune
system-related illnesses are also commonly reported complaints of women
who have Endo. It is quite possible to have some, all, or none of
these symptoms. Endo symptoms are varied and often nonspecific, so
they can easily masquerade as several other conditions, including
adenomyosis ("Endometriosis Interna"), appendicitis, ovarian
cysts, bowel obstructions, colon cancer, diverticulitis, ectopic
pregnancy, fibroid tumors, gonorrhea, inflammatory bowel disease,
irritable bowel syndrome, ovarian cancer, and PID.
chronic or intermittent pelvic pain
dysmenorrhea (painful menstruation is not normal!)
miscarriage(s) / ectopic (tubal) pregnancy
dyspareunia (pain associated with intercourse)
nausea / vomiting / abdominal cramping
diarrhea / constipation, particularly with menses
painful bowel movements
painful or burning urination
urinary frequency, retention, or urgency
How is it diagnosed?
The only way a positive diagnosis of Endo can be made currently is via
surgery, either a laparoscopy or the more invasive laparotomy, where
biopsies are taken from suspected sites. It can also be visualized
during surgery if the surgeon knows what to look for. Ultrasounds,
MRIs, CT Scans and other diagnostic tests are not conclusive. The
ERC does not support "medical diagnoses," such as
administering GnRH therapy prior to a surgical diagnosis.
How Can it be Managed?
The most effective thing an Endo patient can do is to find a specialist
who treats the disease, such as an experienced gynecologist with a
history of treating Endo patients, or if infertility is a concern, a
reproductive endocrinologist. Form a partnership with this professional,
in which you make informed decisions regarding your treatment plan
together. Endo is a serious disease which requires serious treatment.
Surgical Management includes hysterectomy and
excision, fulguration, cauterization, ablation or other means of
Medications such as gonadotropin-releasing hormone (GnRH) agonists and
Alternative medicine, acupuncture, herbal therapy,
massage techniques, and dietary measures. Additionally, while not
a cure for the disease, exercise (as indicated and advised under the
guidance of a trained professional who is familiar with your condition),
good nutrition, and adopting a generally healthy lifestyle may
significantly improve symptoms.
Aren't hysterectomies or pregnancies the cure?
No. At this time, there is no cure for this disease.
Can Endometriosis be prevented?
There is no current manner of preventing Endometriosis, and it is not a
disease which is "contracted" or "caused" by
anything the patient did - nor is it contagious. It is, however,
highly suspected to be genetic.
I heard tampons and sex can prevent Endo. There was a study
done on this by a major institution and it was all over the news, so it
must be true.
False. While it makes for flashy headlines, there is absolutely
zero conclusive evidence that tampons or sexual activity will prevent
Read the ERC's response to
Is there any research being done on Endometriosis?
Yes. For an update on some promising developments, visit our
article, "Endometriosis: Past, Present &
I had a hysterectomy, so I am cured. Right?
Wrong. Hysterectomy treats Endometriosis ONLY on the organs that
were removed. Endometriosis implants also have no need for
external sources of estrogen, so regardless of whether you are on HRT or
not, if all disease was not removed, you may likely continue to
Request the ERC's "Aromatase" and
"Hysterectomy" Fact Sheets for more information on this topic.
My doctor told me pregnancy cures Endometriosis, so I'm going to try
to get pregnant. Is this a good idea?
Only you and your partner know whether it's the right time in your life
to become parents. Pregnancy should never be prescribed as a
treatment for an illness! Pregnancy can keep symptoms at bay for
some women, but it is not a cure.
Should I be worried that I won't be able to get pregnant?
While Endometriosis can cause infertility in approximately 35% of women
with the disease, with the right treatment and partnership of the right
healthcare professional, pregnancy can certainly be achieved by a woman
with the disease. See your healthcare provider if you have
concerns, and request a copy of our "Infertility"
I have heard Endometriosis only affects white, "career
women" who delay childbearing. Is this true?
No. Endometriosis knows no racial or socioeconomic boundaries.
Women of all ages, including teens and post-menopausal women, can suffer
from Endometriosis. There have even been a few men who were
diagnosed with the disease!
Have more questions? Let us know!
If you are interested in receiving any documents from the ERC, please
Request Form. Of course, this information will only be
utilized by the ERC for these purposes and will never be shared with
outside sources. In addition, being added to the ERC's mailing list will
enable you to be kept informed of the latest research and developments
surrounding the disease.
DISCLAIMER: The information presented
herein is offered for informational purposes only. This material is not
intended to offer or replace medical advice offered by your personal
physicians or healthcare professionals. Additionally, the ERC does not
recommend or endorse any physicians, medications, organizations, or
treatment methods. Please consult your personal physician or other
medical professional for treatments and diagnoses.