How I Got Kicked Out of a Facebook Group on Birth Control Side Effects
Ever since I began my research on birth control side effects and health consequences for my book In the Name of the Pill, I have been shocked to learn how many women have not been properly warned about the real risks involved with taking factory-made steroids.
A colleague of mine who I discuss these issues with said he often gets into discussions with women about these health risks, and I noticed that many of the conversations he was telling me about had happened online. So I couldn’t help but ask him, “How are you meeting so many women online?” He said it was mostly from Facebook groups.
I was intrigued, so I began searching for a group related to birth control side effects. I joined one with several thousand members. My primary goal was to see what types of side effects women were discussing. I wanted to know what their biggest concerns were and also see if I might have overlooked some common complications in my research.
As I scrolled through the archived posts, none of the side effects surprised me—migraines, low sex drive, heavy periods, severe cramping…
What did surprise me in this Facebook group was how eager the administrators and frequent contributors were to assure the women that there was nothing to worry about. No matter how alarming the side effect, they would chime in with responses like ‘Sounds perfectly normal to me’ and ‘Just give your body time to adjust.’
When serious side effects get brushed under the rug
I maintained my low profile for only about two-and-a-half days. That’s when I saw a post from a young woman with a rare connective tissue autoimmune disease. After getting the NuvaRing, she had noticed substantial changes in her disease symptoms. Plus, her blood pressure had shot through the roof.
The regulars had already chimed in with their assurances by the time I saw the post. Most of them claimed that their blood pressure had gone up at first but then normalized, or they shared how they had suffered some joint aches and pains, but one group member suggested she should get off birth control just to be safe.
The regulars went into attack mode and told the commenter she needed to be armed with scientific evidence if she was going to make such dramatic recommendations. In defense, the woman shared this news story from NPR about Merck’s $100 million dollar liability payout to settle thousands of NuvaRing lawsuits.
This was the Facebook page administrator’s response (I promise I’m not making this up): “National Public Radio is your source? It’s a news outlet. Their literal job is to sensationalize…Combination methods are SAFE.” She countered by posting a webpage from Planned Parenthood talking about the relative safety of using the NuvaRing. I couldn’t contain myself. I replied with, “Planned Parenthood is your source? Their literal job is to promote contraceptives.”
The page administrator said that their Facebook group wasn’t into conspiracy theories, and that any discussion points needed to be backed up by sound science from trusted sources like Planned Parenthood. So, I asked if the Obstetrics & Gynecology Journal was sound enough and cited this research article.
Then, I addressed the young woman with the autoimmune disease directly, “These anecdotal assurances are irrelevant. Your body chemistry is unique and the fact that you have an autoimmune disease could leave you more susceptible to certain side effects. You should note any changes in your symptoms since you started on the NuvaRing and set up appointments to discuss them with your Rheumatologist and Ob/Gyn.”
Within five minutes, I was kicked out of the group, and could no longer see any of the threads.
I was shocked. The only name I could remember from the debate was the woman who had suggested the symptomatic woman should remove her NuvaRing. I direct-messaged her to say that I had been blocked and she replied, “I’ve never seen such bad attitudes from the admin of a group. It’s terrible! I’m not anti-hormonal birth control but do think people need to have fully informed choice. These people seem to be acting for the PR departments of the pharma companies.”
Indeed, they do.
Creating spaces for real talk on birth control side effects
Since this experience, I’ve thought about how difficult it must be for women to get real answers about their birth control side effects.
I’ve found that a lot of women are more than a little concerned about their birth control. They sense that their doctors aren’t giving them the full truth. Some are leery of discussing these concerns with their doctors because they’ve been dismissed or even ridiculed for daring to question the Pill.
So I’ve created a new Facebook group entitled, Straight Talk About Birth Control. If you have questions or concerns about your birth control or if you can speak openly and honestly with women who do, I’d like to invite you to join the Facebook group.
The goal of this group is to give these women an avenue for open and honest discussion about their concerns—not feed them false assurances that sound like they were written by a pharmaceutical PR department. This page is not intended to provide medical advice or replace medical treatment they need. However, it is intended to make sure they are fully informed about the risks associated with hormonal birth control and are encouraged to get the help they need.
Because, over the course of compiling research on birth control side effects, I have read too many stories of women who have died or nearly died of adverse reactions to contraceptives to brush any woman’s symptoms under the rug.
Follow this link to join the “Straight Talk About Birth Control” Facebook group: https://www.facebook.com/groups/898055200553336/