Pseudotumor cerebri. Intracranial hypertension. “False brain tumor.”
All of these terms mean the same thing, and each one can lead to the same thing for anyone afflicted with it: progressive, and potentially permanent, blindness.
And according to multiple class action lawsuits, and backed up by research, intracranial hypertension (ICH) is also a rare, albeit extremely serious potential risk from intrauterine levonorgestrel, a synthetic progestogen widely distributed in the Mirena IUD (although other contraceptive formulations containing levonorgestrel, including Plan B—may also carry the same risk to varying degrees).
Pseudotumor cerebri (PTC) literally translates to “false brain tumor,” and the term is used to describe increased cerebrospinal fluid (CSF) pressure within the skull precisely because the symptoms it produces are highly similar to those caused by brain tumors—although, in cases of PTC, there is no actual tumor present. Just as someone with a brain tumor might experience changes or loss in vision, headaches, nausea and vomiting, and tinnitus among other symptoms, so too will someone with PTC be affected by these debilitating symptoms. In particular, the increased CSF pressure within the skull causes swelling of the optic nerve, which can cause changes and/or loss in vision, which may be permanent.
For many, the exact cause of PTC is unknown. Women, and particularly obese women, seem to have a higher risk of developing the condition, and pregnancy, thyroid conditions, and chronic kidney failure may all further exacerbate one’s risk. If the cause of PTC cannot be determined, it will be termed “idiopathic.” But for far too many women, the cause may be linked to their choice in contraceptive.
And although researchers have known for more than two decades that other levonorgestrel-releasing contraceptives (like the Norplant) have been linked with PTC, it is a complication that many women have suffered from—and a risk many claim was downplayed or unmentioned by their doctors and the drugs’ pharmaceutical companies alike.
This is sadly unsurprising news, given the conclusion of a recent study reviewing the number of Mirena-associated intracranial hypertension cases reported to the FDA’s Adverse Events Reporting System (FAERS). Although researchers discovered “a higher than expected number of reports of ICH with Mirena in the FAERS database,” they nevertheless concluded that “the small risk of ICH may outweigh the risk of unintended pregnancies.”
Safer Family-Planning Options for Women
What I wish these researchers would acknowledge—and even more so, what I wish the women whose vision may be permanently damaged because of their choice in contraceptives knew—is that there is a better way for women to plan their families that involves absolutely no risk of PTC or its associated symptoms.
While long-acting reversible contraceptives (LARCs) like IUDs and implants may be among some of the most effective methods on the market at preventing pregnancy, modern methods of Fertility Awareness-Based Methods (FABM) and Natural Family Planning (NFP) can be just as effective at preventing pregnancy (depending on the method), and carry none of the debilitating, dangerous, or permanent risks of LARCs. And, although most women with an IUD will never experience PTC, wouldn’t it be better if doctors and pharmaceutical companies were open and honest about the very real risks presented by the various types of birth control, and knowledgeable about the many risk-free alternatives?
Recently, many women have reported that they felt unheard by their healthcare providers when they brought up concerns of birth control side effects. Which is why some OBGYNs have begun offering information on fertility awareness-based methods in their practices to give women a full range of options for them to choose from.
Unfortunately, there is very little money to be made by the medical establishment from FABM and NFP, especially when compared to all of the pharmaceutical options. So until more in the medical community embrace the science and research on fertility charting, women will have to be their own healthcare advocates and learn more about natural options of family planning. We always recommend that, if women are seeking FABM for pregnancy prevention, she should reach out to a certified FABM instructor to benefit from the highest effectiveness rates.
Many women who have made the switch from pharmaceutical birth control to natural family planning report that they couldn’t feel more empowered to know they have more awareness of what is going on in their bodies. They can also have the confidence of knowing they aren’t exposing themselves to drugs that could hurt them.