Warning: You might see a nipple in the following shots. Thank goodness this isn’t Facebook. But this is important and since two of my cuts are near my nipple it behooves me to include it.
It’s been a while. There’s a very good reason for that. I’ve been working, playing, and a bit high on medicine. Today I’m lucid enough to write this. Since February I’ve been dealing with an insidious and painful health issue. The saddest thing is that no one ever warns you about it. Nearly all of my chronic conditions have come as a surprise to me. When we learn about health we never learn about the most common conditions that can turn our lives upside down, ruin our ability to work traditional jobs, and even the ones that change our personalities.
It was no different with this condition. But I want to put this out there for those who will experience it. Because the little information I did find on it was totally medicalized and left out the actual experience of having it. So I’m writing about what I went through.
There’s something besides cancer that you should take very, very seriously if you happen to find a lump in your breast. Most lumps you’ll find are not cancerous, some may simply be harmless fibrous tissue, and others might simply be temporarily clogged ducts.
And then there is the most painful, wearying, and terrifying option besides cancer.
More specifically in my case, continuous/chronic granulomatous mastitis. There is no known cause and no cure. But over and over again, the breast tissue becomes inflamed,the immune system responds by destroying the tissue, and an abscess forms.
The doctors will first need to diagnose for treatment, which means ultrasounds, biopsies, a mammography, and attempts to drain with a large needle. This goes on for months. You’ll be treated with antibiotics at first, months of antibiotics which wreck the flora in your gut. The painful lump will continue to grow and needs to be cut open before it ruptures and destroys your skin. You’ll likely need a narcotic just to deal with the pain.
But that’s not the most pain you’ll feel. They give you anesthetic for each cut. And they’ll give you the narcotic for the days following. But the first day after the incision is made is the worst. Because the breast is still infected and the incision is large they need to pack it every day to make sure that it is completely drained and to ensure that the tissue and skin heals properly. You do not want an empty bubble of space in your body!
So the first day after the incision the doctor will stick a long q-tip in to measure the amount of fluid and the depth and width of the cut. This fucking hurts! I have a very high pain tolerance but this is the most pain I’ve ever been in, and I’ve got endo, had a C-section, and several other surgeries! So after they’re done poking around at all of your exposed nerves the wound needs to be packed. Tightly.
When this first started I had to keep my hands tucked beneath my body so that I wouldn’t punch the nurse. That’s how much it hurt. Keep in mind that’s with the narcotic!
Each day afterward gets slightly less painful but it still takes weeks to heal. That means going to the doctor every single day and then to urgent care on the weekends. For weeks. For months. It gets expensive.
And this type of abscess keeps coming back. New sites pop up. They’ll try to drain with a needle first (which hurts, of course). New incisions must be made. And the last resort: full on surgery, in which the incision goes down inches.
This is the only time in my life I wished for smaller breasts.
I ended up having two surgeries for it, with the last one going all the way down to the muscle. Thankfully that was also the quickest incision to heal because there was no infection further down.
After about four months of antibiotics that just weren’t helping (and in fact just started making me feel awful-see gut flora above) I was weaned off of them. I was sent to Infectious Diseases. All of the cultures they’d taken never grew anything. There was talk of using steroids to weaken my immune system and halt the inflammatory response. More cuts. Fairly quickly I learned to pack my incisions myself.
The sites got tinier but they still appeared. I became quite good friends with my doctor, nurses, and other staff. Right now all the remaining sites have been cut open and there are no other worrisome spots. But we’re waiting and watching to see what happens. To see if any new sites come up. To see if this nightmare is over or whether I’ll have to nuke my immune system as the very last resort.
If you happen to have a painful lump in your breast please get it checked out immediately. Because if you let it develop it will destroy your breast. And you can’t simply have any doctor inspect it; you’ll need a breast specialist. You’ll need to let your job know that you’ll have to leave every single day for weeks or months (if you can even bear to still work).
To end with I’m adding some pictures of the evolution of my cuts. For me it is only in one breast. Some women may have it in both. And the best thing you can do is simply ride it out.
I’ve had two biopsies, about five ultrasounds, one mammography (which was so freaking painful on an already tender breast!), two surgeries, and ten incisions total (with two sites being opened twice).