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'Do I Have Endometriosis?' Course UpdateFrom: Jennifer (anonymous@obgyn.net)Wed Jan 22 12:59:51 2003
Hello everyone- I would like to thank everyone who shared their opinions with me about the mention of Lupron in the "Do I Have Endometriosis?" course which is located off the Endometriosis Association's website at http://www.endometriosisassn.org. As I stated before, the course is primarily for women who have not yet been diagnosed and may not know very much about endometriosis. All treatment options that are mentioned in the course are provided to give women information about what is available so that they can research these options before they hear about them in the doctor's office. Treatment options mentioned in the course are birth control pills, progesterone drugs, GnRH agonists, lapraroscopies, hysterectomies, Chinese medicine, massage therapy, and more. The course does not promote any specific treatment approach- they are provided for information purposes only. One of the main objectives of the course is to teach women how to empower themselves through knowledge, self-care, and support from the community of like endo sufferers. Based on the discussion on this message board, we have changed the content of the course in regards to how Lupron is mentioned. Because we still feel strongly that women should be exposed to the term GnRH agonists before their doctor suggests it as a course of treatment, this drug class is still included. However, the treatment of the page has changed. Please see below for the new content from the course. To answer any outstanding questions concerning the course and its relationship to TAP pharmaceuticals, there is no relationship of any kind. NogginLabs received no money for the creation of or support for the course from TAP pharmaceuticals or any other company for that matter. It was a 100% pro bono/donated course which NogginLabs continues to host it on its servers at no charge. The Endometriosis Association also recently explained their relationship to TAP in detail (including numbers) in an earlier post on this message board, which can be reached by going to the bottom of http://forums.obgyn.net/endo/ENDO.0301/0854.html. I appreciate your suggestions, opinions and comments about the course and welcome any additional ones at jennifer.hochgesang@nogginlabs.com. Details about the change: In this section of the course, the user is introduced to the fact that there are endo support groups. She is introduced to three women, each of which gives differing opinions on their experiences with the three major treatment approaches to endometriosis-- surgical, medical and natural. The women who describe their experiences with medical and natural approaches have changed. (Medical) Susan: About three years ago, my doctor performed a laparoscopy. He found endo on my ovaries and my bowels, and he said he got rid of it all. Well, about six months later, it came back. All the pain, the irregular, heavy periods, everything. I didn't want to go through surgery again, so I decided to take a GnRH agonist to control the endo. There are several GnRH agonists available such as Synarel, Lupron, or Zoladex. I took it for six months--as prescribed--and had some side effects like occasional hot flashes, mood changes and headaches. But, overall I've been feeling good for almost a year now. (Natural) Lorrie : I took a GnRH agonist too, but my experience was much different. When you're taking them, your estrogen level decreases to the point that you go through a forced menopause. I had night sweats, nausea, weight gain, decreased libido, depression, wild mood swings, hot flashes--the works. It was awful. I decided that I wanted to try a more natural treatment. I was sick of pumping chemicals through my veins. I now go to an acupuncturist once a week, exercise regularly, get massages, and avoid foods that make my endo worse. While I can't say I'm "cured," I feel in control of my endo and my pain has diminished significantly. (Surgical- was not altered) Margaret: Dr. McDonough is my doctor, too. She performed a laparoscopy on me four years ago and removed all my endo with a laser. She's a great doctor and I recommend her for a laparoscopy--at least to confirm your endo diagnosis. So far so good! Again, this section in the course was included to introduce women to support groups, to illustrate how communicating with other women with endo can be informative, validating, as well as comforting and to show that there are many different treatment approaches. As women with endo know there is no single approach to treating endometriosis that works for all women. We wanted the course to provide an explanation of these different treatment approaches and illustrate once again, that a woman will best care for herself and her health by acquiring as much information as possible, receiving support from family, friends and other women with endometriosis, and through the realization that she knows her own body better than anyone else.
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