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Re: 'Do I Have Endometriosis?' Course Update
From: anonymous (anonymous@obgyn.net)
Wed Jan 22 15:21:22 2003
Who said it was wrong and not helpful?! I found it extremely
enlightening. Glad to see the content was changed accordingly.
At Wed, 22 Jan 2003, Anonymous wrote:
>
>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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