Re: 'Do I Have Endometriosis?' Course Update
From: Anonymous (anonymous@obgyn.net)
Wed Jan 22 13:37:06 2003
See below: for the poster who said the forum discussion on Lupron and
pharmaceutical companies was essentially wrong (off-base, not helpful or
useful, etc). Some changes were made as a result of endo patients
speaking up. Keep talking and writing ladies...
At Wed, 22 Jan 2003, Jennifer wrote:
>
>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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