Idiopathic Granulomatous Mastitis

 Hey, there! You may have landed here because you’ve recently been diagnosed with granulomatous mastitis, and you’ve searched the internets trying to figure out what the heck that is, what is happening to your body, and what will be happening.

You’re not alone.

Granulomatous mastitis is an incredibly frustrating disease, mostly because it’s rare enough that there just isn’t a ton of information out there about it yet. And believe it or not, there’s actually way more info than there was just four years ago, when many of us got our diagnoses and began our own research. Even still, you will likely experience doctors who have never heard of it and have no idea how to treat it. Or you may have doctors who think it’s just like any old breast disease and are overly confident in their abilities to “cure” it.

You may be coming off a pretty emotionally draining time period of ultrasounds and biopsies, and chances are good that somewhere along the line the possibility of inflammatory breast cancer was brought up. Thankfully, instead, your biopsy came back negative for cancer, but with a report for an unfamiliar disease: Granulomatous Mastitis, in one of its many forms

You are wanting answers and guidance. So were all the rest of us. I hope you find the following anecdotes and advice helpful as you navigate this new journey.

But before you start reading, the best advice I can give is run over to Facebook and join the Granulomatous Mastitis Support Group. This is by far the best resource you’ll find. It is a private group where those going through GM, or in remission from GM, share their experiences and offer help.

Don’t hesitate to ask any questions! This disease is crazy and unpredictable–going through it alone is not an option.

– Jordyn