Intrauterine Devices (IUD) With Progestogen Linked to Pseudotumor Cerebri, Warns Consumer Safety Watch

Intrauterine Devices (IUD) with progestogen have been marketed as a safe alternative to birth control pills and other options such as the patch or injections, but Consumer Safety Watch says manufacturers have failed to warn women and their doctors of the link to pseudotumor cerebri.

Intrauterine devices with progestogen have become some of the most popular forms of reversible birth control in the world, with an estimated 150 million women using IUDs for long-term pregnancy prevention. There is no question that IUDs with progestogen are effective in protecting against pregnancy, but there have been a growing number of reports of women experiencing serious, potentially life-threatening side effects while using the birth control device, including:

  • Pseudotumor cerebri (PTC)
  • Idiopathic intracranial hypertension (IIH)
  • Perforation of the uterus
  • Ectopic pregnancy
  • Pelvic inflammatory disease
  • Migration of the device to other parts of the body
  • Infection
  • Device expulsion
  • Embedment of the device in the abdomen or uterine wall
  • The need for revision surgery

Link Between Progestogen IUDs and Pseudotumor Cerebri

Pseudotumor Cerebri is commonly misunderstood and misdiagnosed by medical professionals. Individuals who suffer from common symptoms of pseudotumor cerebri should ask their doctor to look into this as a possible source of their complications.

Alan Christopher, Consumer Safety Advocate

One major complication that has been linked to hormonal birth control devices like progestogen IUDs is pseudotumor cerebri (PTC), or "false brain tumor," a condition characterized by an increase of pressure inside the skull that was thought to occur for no apparent reason. In a 1995 study published in the New England Journal of Medicine, researchers identified 56 cases where pseudotumor cerebri side effects occurred in women using birth control pills or progestogen intrauterine devices. More recently, at the 2015 meeting of the Association for Research in Vision and Ophthalmology, research was presented indicating that one manufacturer's progestogen intrauterine device was "disproportionately more common among IIH patients than non-IIH patients."

Diagnosing Pseudotumor Cerebri

To diagnose the condition, a doctor will review symptoms and medical history, conduct a physical examination, and order several tests.

Eye exams

A doctor trained in eye conditions (ophthalmologist) may conduct an eye examination.

If pseudotumor cerebri is suspected, your eye doctor will look for a distinctive type of swelling affecting the optic nerve, called papilledema, in the back of your eye.

You'll also undergo a visual fields test to see if there are any blind spots in your vision besides your so-called normal blind spot in each eye where the optic nerve enters the retina.

Brain imaging

Your doctor may order an MRI or CT scan. These tests can rule out other problems that can cause similar symptoms, such as brain tumors and blood clots.

Spinal tap (lumbar puncture)

Your doctor may order a lumbar puncture to measure the pressure inside your skull, as well as your glucose and protein levels.

In this test, a specialist inserts a needle between two vertebrae in your lower back and removes a small amount of cerebrospinal fluid for testing in the laboratory.

Treating Pseudotumor Cerebri

Treatment options may be almost as bad as the condition itself. Sometimes medications will reduce the fluid levels, which relieves the pressure. If the case is more severe, shunts (surgical tubes) must be inserted into the skull to drain the excess fluid.

The goal of pseudotumor cerebri treatment is to improve your symptoms and keep your eyesight from worsening. Depending on your condition, your doctor may prescribe medications or recommend surgery to control your symptoms.


Glaucoma drugs - One of the first drugs usually tried is acetazolamide, a glaucoma drug. This medication may reduce the production of cerebrospinal fluid. Also, it has been shown to improve symptoms in 47 to 67 percent of people.

Possible side effects include stomach upset, fatigue, tingling of fingers, toes and mouth, and kidney stones.

Diuretics - If acetazolamide alone isn't effective, it's sometimes combined with furosemide, a potent diuretic that reduces fluid retention by increasing urine output.

Migraine medications - Medications usually prescribed to relieve migraines can sometimes ease the severe headaches that often accompany pseudotumor cerebri.

If your vision worsens, surgery to reduce the pressure around your optic nerve or to decrease the intracranial pressure may be necessary.


Optic nerve sheath fenestration - In this procedure, a surgeon cuts a window into the membrane that surrounds the optic nerve. This allows excess cerebrospinal fluid to escape.

Vision stabilizes or improves in most cases. Most people who have this procedure done on one eye notice a benefit for both eyes. However, this surgery isn't always successful and may even increase vision problems.

Spinal fluid shunt - In another type of surgery, your doctor inserts a long, thin tube (shunt) into your brain or lower spine to help drain away excess cerebrospinal fluid.

The tubing is burrowed under your skin to your abdomen, where the shunt discharges the excess fluid. Symptoms may improve for some people who undergo this procedure.

However, shunts can become clogged and often require additional surgeries to keep them working properly. Complications can include low-pressure headaches and infections.

This procedure is generally only a treatment option if other treatments haven't relieved your condition.

If you're obese, your doctor will recommend weight loss. You may work with a dietitian to help with your weight-loss goals. Losing weight may improve your symptoms. Some people who are morbidly obese may benefit from weight-loss programs or gastric surgery to lose weight.

Source: Consumer Safety Watch