ugh.

I've heard ads for the Violet Petal Study on the radio, all over the internet, etc. Which is arguably great as it does raise awareness (get more people to have heard the word endometriosis and know it's a severe chronic pain disease)...but it's for a study of a new form of a medication that has some serious problems.

I think the writer of this letter vilifies Lupron too much, possibly: it deserves some vilification for sure but I know there are women here who it has helped. I absolutely disagree with the drug-company-profits-motivated push to make it less a drug of last resort (which is how I see it) but I don't think it should be pulled from the market or have its approval for endo retracted.

Still, ugh. Stupid Big Pharma.

Doesnt surprise me (eyes rolling)...sigh....

wouldn't go on that violet petal deal if you paid me they basically own you for a year and if you're unlucky enough to be put on the placebos that will be you for 2 years. Plus they pull you off birth control. I'd be bleeding for the entire 2 years. Thanks, but I'll pass haha

Ethically, they can't do that. It's against the Marketing Ethics and Code of Conduct. I'm getting a mba in marketing. They can get into serious trouble.

Ethically, they have to be straight-up about what it is they're selling. I just glanced it over, and it seemed a lil shady on the ethical side. I'm no expert though lol just a student lol

I just think it's shady. I don't like the idea of some drug company creeping on Pinterest (or any social media site). It's sketchy.

its also illegal

Well, maybe not, because Advil and Tylenol all advertise their products, so maybe its ok. Don't forget too that Lupron has helped a lot of people tho I do understand where youre coming from. The Yaz lawsuit is also creeping around facebook, which is also wrong. And now people think they can sue because they got pregnant off of yaz. Like no offense, but people DIED because they took the pill, but at the same time what else was against them? For example, did they smoke, drink heavily? I take that pill and have *knocks on wood* no problems with it. And really all bcps have the same warnings on them. But a lawsuit shouldn't be creeping around facebook.

But at the end of the day, I guess you have to ask yourself how is this any different from the TV commercials that we see daily advertising all sorts of medicines. I really don't think that its THAT big of a deal. They too need to advertise, and social media is the way people do that nowadays.

I am not agreeing with them in anyway shape or form, but saying simply that its a way to advertise and no more ethical than any other company.

Alana,
it is different because they are posing as a support group and trick people into joining for "support" during their fight with endo. The group then tries to lure women into joining the violet petal study. They do not offer support, but will post things periodically that look like they are offering support to suffering women.
It is their way of marketing the violet petal study to masses of women...which is essentially testing the effectiveness of a med that is Lupron in pill form.
Very different than a commercial for an OTC.

I actually belonged to this group, but I am so busy I ever really noticed what they were doing (as I read my FB feed pretty quickly) but someone else had mentioned this in another forum I belong to, and then I started paying attention.

This is absolutely sickening. I seriously hope they get nailed for this. Grrrrr. Some people have absolutely no morals.

Ahhh gotcha misunderstood

NP Alana!
I hate that companies and Dr's try to take advantage of our suffering, we are vulnerable because at times we are desperate, but luckily we aren't stupid.

I had caught the Violet Petal study maybe a year ago or so and was intrigued naturally but after looking into it a bit thought there was something not quite right, figured Id let it go a bit before I did anything else, a lot of new or unproven things can seem fishy at first right? Its terrible that WE are put more at risk, mentally, emotional and physically by people whether it be pharmaceuticals, media or a like how thing our pain is the gain! I have to hope and pray that smart informed woman like us will be able to shine a light to these people before they can do too much damage, a burden that grated it we should have to take on but apparently they think were a vulnerable group, and I can only hope they several underestimate us. That having been said if they were 100% transparent and wanted our help to test then hey at time guinea pigs are needed wouldnt be the first time for me thats for sure. With something like this where theres no one size fits allif my testing a pill might help my daughter or yours Im willing but its all in how they go about it and this
As for the vilifying of Lupron, I would certainly tread lightly there. The debate over use of this drug has been and I suspect will continue to be hotly so. But like so many other issues theres always two sides and WE do ourselves a disservice to get to judgmental over any one particular treatment protocol. Bottom line is because of the nature of the disease and the fact that everyone woman is different what work on one person might not the next but we need to be our own advocates and just simple given our personal experiences in hope that the combined knowledge brought by the differing experiences will help each other. As part of my treatment I have been put on Lupron twice and both times although there have been side effects that were less then pleasant as far as the end goal its worked beautifully, shirking and quieting things down considerably.

@LoMac My real problem is with the companies behind Lupron, not the drug itself.

I personally would never take Lupron, but that's my own feelings about. I read a lot of lawsuits because I think they're interesting (I have a weird hobby lol). The companies involved with Lupron have too many strikes against for my comfort level.

If these allegations are true here:

http://www.lawyersandsettlements.com/articles/drugs-medical/drug-side-effects-medical-device-companies-dangerous-2-13725.html#.Uo-tCSd62So

Then I think the companies should be in BIG trouble, and face both criminal and civil consequences. Patients have a right to informed consent, and if they're not getting all of the information then I think that's wrong. I also think clinical drug trials should have better transparency.

Just saw this update on Endometriosis Team.

http://imgur.com/a/oN2R6?gallery

Apparently now Endometriosis Team is trying to take credit for The Million Woman March for Endometriosis 2014.

I am so grossed out by this :( First they creep on FB and Pinterest, and now they're creeping on the Endo Awareness March. Ugh!