A 501(C)3Tax-Exempt, Tax-Deductible Organization

Endometriosis Research Center
World Headquarters
630 Ibis Drive
Delray Beach, FL 33444 USA


Toll Free: 800/239-7280
Phone: 561/274-7442
Fax: 561/274-0931
Contact Us Via Email

Endo FaqAlternative TreatmentsAwareness ProgramsSupport GroupsMaterial Request

 

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 contact us or visit our educational materials page to order through a secure credit card server.

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Retrograde menstruation (outdated theory which has been disproved by many experts)
Transplantation theory
atrogenic Transplantation
Coelomic Metaplasia
Heredity
Immunology

There are many other theories being investigated. Some believe that it may actually be "a combination of several factors."

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:

chronic or intermittent pelvic pain
dysmenorrhea (painful menstruation is not normal!)
infertility
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

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.

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 destroying implants
Medications such as gonadotropin-releasing hormone (GnRH) agonists and synthetic hormones 

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 Endometriosis.  Read the ERC's response to this "study".

Is there any research being done on Endometriosis?
Yes.  For an update on some promising developments, visit our article, "Endometriosis: Past, Present & Future"

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 experience symptoms.  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" presentation.

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 see our Material 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.