Endometriosis is a gynecologic condition in which tissues similar to the lining of the uterus (called "endometrial stroma and glands"-- normally located only inside the uterus) are found elsewhere in the body. Endometriosis lesions can be found anywhere in the pelvic cavity: on the ovaries, the fallopian tubes, the pelvic sidewall and the uterosacral ligaments. Other less common sites include the bladder, bowel, intestines, colon, appendix, and rectum.
The Endometriosis Association (EA) is an international organization that was founded in 1980 by Mary Lou Ballweg and Carolyn Keith. Here is what they have to say about themselves:
The Endometriosis Association was the first organization in the world created for those with endometriosis. As an independent self-help organization of women with endometriosis, doctors, and others interested in the disease, it is a recognized authority in its field whose goal is to work toward finding a cure for the disease as well as providing education, support, and research.
The Endometriosis Association is one of the few non-profits that I am aware of in the field of infertility that has such comprehensive and far reaching information specifically linked to their particular disease. Part of the reason is the amount of time that they have been in existence and the exponential way in which EA has grown in their thirty years. Mary Lou Ballweg is still at the helm as the President/Executive Director and is as passionate today as she was in the very beginning. (For a free packet of information call 1-800-992-3636.)
Tel: (414) 355-2200/ Fax: (414) 355-6065
Important work is being done on Endometriosis and EA is up to date with the information on their website, as well as actively supporting the research being done. Vanderbilt University Medical Center is in the news for having received a multi million dollar grant from the National Institute of Health (NIH):
The multi-million dollar effort has a two-pronged approach the establishment of a National Institutes of Health-funded center for research in endometriosis and a research initiative sponsored by the Endometriosis Association in which Vanderbilt will serve as the primary North American research site
Another excellent website, a place where you can trust the information that you are reading is Endometriosis.org, founded in 2005 by international advocates and professionals in the field. Lone Hummelshoj is the founder, publisher and editor in chief. She has on her peer review board some of the greatest talent in the field. The board truly reads like a who's who in the field of Endometriosis.
From an article that Lone wrote, it is clear that she understands what living with Endometriosis is like. Here is what she has to say:
Endometriosis is a mystery - an enigma! We do not know the origin of the disease. We do not know why it causes such extreme symptoms in some women, and not in others. The treatment options can be - let's be honest: a bit "hit and miss". And, unfortunately, because endometriosis is associated with menstruation, sex, infertility, and pain (all taboo subjects in most societies) it is a disease that is not well known, understood, or accepted in the general public.
If you are suffering from Endometriosis, whether because it is causing infertility or because the disease is causing you pain, these two resources are wonderful places to gather reliable information. Well researched, peer reviewed clinical research from the top professionals in the field. In addition both of these websites address the emotional and psychological effects of the disease, as both founders of these organizations have had first hand knowledge of how Endometriosis affects women.
If Endometriosis is your diagnosis, please let us know. We know that there's more to this diagnosis than just a name or even infertility. That you may be living in pain. An overriding theme to this blog is that you are not alone. The last place that we want you to feel alone is in pain.