Granulomatous Mastitis: Part Four

Brief Synopsis: I was diagnosed with a somewhat rare condition called idiopathic granulomatous mastitis in August 2018. Because of it’s rarity, there’s not a lot of helpful info on this crazy inflammatory disease on the internet, which was very frustrating when I got my diagnosis. Luckily I’ve managed to find a group of women who also experience this condition, and I’ve learned much more in the last five months. I’m writing down my experiences with GM online, not only to give others out there some real information about the disease, but also to keep track of all the details of my personal story in the hopes of figuring out the why of this disease for myself.

Part 1. Part 2. Part 3.

After my surgery, I was introduced to the crazy world of wound packing.

Believe it or not, sometimes after a surgery, doctors will opt to not stitch the incision closed. You then have what’s called an “open wound,” a super fun experience which requires a lot of time and pain management to take care of. And the best part of this experience is called wound packing.

The day after my surgery I was still in the hospital because the doctor needed to do the first wound packing before I left, so he could show Chris was was required. Chris had to be the one to do it, because I couldn’t see both of my incisions, and sight is a necessity with this kind of thing.

When the nurse came in to prep me for the surgery, she explained that she was going to give me strong pain meds through my IV about ten minutes beforehand to lessen the trauma. I actually had thought I’d been on pain meds the whole time, and was very pleasantly surprised to find that they hadn’t been giving me anything other than whatever’s in a standard IV (some kind of fluids, I think?) all night. The pain meds made me feel super loopy and gave me somewhat of an out of body experience for the first few minutes, but unfortunately they didn’t do much to diminish the pain of the first wound packing.

Wound packing goes like this: First, all the gauze that was previously in the wound has to come out. Since this was the first dressing change since the surgery, there was a lot of gauze that needed to come out. This ended up taking quite awhile, because all those newly exposed nerves get brushed by the dressing as it’s slowly pulled out. The faster you go, the more painful it is. My very kind nurse went at a snail’s pace to shield me as much as possible from the pain, but dang it hurts at first.

Once the gauze is all out, the wound is cleaned with saline (squirted in with a syringe), then the hole has to get packed with new gauze. The new gauze is doused with a solution (I’m blanking on what it is at the moment), then it gets slowly guided into the open wound. The gauze resembles a ribbon, and once the beginning gets in, a q-tip is used to slowly fold it over and push it in a little bit at a time. The nice thing is that you really don’t have to worry about over packing with the gauze, in fact, you want it to be pretty loose inside the wound so the area does start healing itself.

Why is wound packing necessary? At the time it was explained to me, I understood that it has to do with the manner in which the wound heals. By closing the incision, the inside of the deep cut might not actually heal. I found this explanation on the American Association for the Surgery of Trauma’s website: “When a wound is deep, or when it tunnels under the skin, packing the wound can help it heal. The packing material absorbs any drainage from the wound, which helps the tissues heal from the inside out. Without the packing, the wound might close at the top, without healing at the deeper areas of the wound.”

So that’s wound packing. I told you, it’s crazy town.

Because I had such a hard time with the pain of the first wound packing, my doctor recommended that I stay the remainder of the day so that they could perform the second one for me with IV painkillers again. (Oh, I forgot to mention that this wound packing happens twice a day, super fun.) So I got another full relaxing day in the hospital, complete with meals brought to me, while I read away on my Kindle. Honestly, I do not mind hospital life.

I went home pretty late that night after the second packing, and settled in at home to recover for a few days. Chris’ parents came down to help us with Lincoln so Chris could focus on helping me with the wound packing and driving me to several doctor appointments to follow up.

4 thoughts on “Granulomatous Mastitis: Part Four

    • Author gravatar

      Please…I’m curious to know the outcome of this. I’m going through the same thing. This started back in Sept. I’ve had mammogram, ultrasound, core needle biopsy, surgical biopsy and just had two more incisions made this week for drainage with wound packing involved😩. Oh…and im on my 3rd round of antibiotics.

      • Author gravatar

        Hi, Maria. I’m so sad to hear you’ve gone through so much in just a few short months! I do need to go back and finish the story for others who are finding it here. Right now (two years after my initial I&D) I am in remission, thank God. My remission started when I became pregnant with my daughter in February 2019; somehow pregnancy flipped my hormones back, as I’m pretty sure my GM was a result of a hormonal disruption. I’m hoping I stay in remission, but always a little fearful every time I feel a little twinge in the area. 🙁 Have you found the Facebook group for support? Look for the group “Granulomatous Mastitis Support Group”.

    • Author gravatar

      My heart goes out to you after reading your experiences. My daughter who turned 30 last November was just diagnosed. Myself and her 2 younger sisters are her support team. I wondered if you could forward the support group info to me so I can give it to her. I think it would truly help

      • Author gravatar

        Hi, Carol. I’m so sorry to hear your daughter is going through a GM experience. It is such a weird, unique disease that affects everyone so differently! The Facebook group is called “Granulomatous Mastitis Support Group” and was such a lifesaver to me when my GM first started. I hope to see her in the group! 🙂

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