IGM My Story Continued

I blogged, a few months ago, to share with everyone the story of my pregnancy and my journey with sever acute mastitis. My daughter was born into this world, without complication on May 29th. After her birth I did what I felt was right in my heart and attempted to breast feed her. This unfortunately proved to be a bad decision as my mastitis now turned into, what we thought then, was milk fistula and worsened.

For three weeks I fought for what I thought was the best decision for my daughter. As I met with doctors they all told me the same thing, that I needed to take care of myself and become healthy and that that was the best decision for my daughter. So I turned to formula when she was three weeks old, and I hoped and prayed that my body would heal. After trying a new antibiotic and getting a second opinion, we realized that my situation was only getting worse. I cried knowing that neither option presented to me was one I wanted to try. I have to be honest, after going through the initial surgery for the mastitis and going through recovery (pregnant) for almost 5 months, I didn’t want to do it again. But surgery seemed like the most viable option. My family and I had a trip to Orlando planned for months. With my pregnancy being so rough, we figured we would celebrate as soon as we could. With a new born I planned mostly to spend time inside the resort, and let my four year old enjoy a little summer fun with her father, aunt and cousin. We had a great time but looming over my head was this surgery that I had scheduled the week that we would return home. I must admit, the trip was a little too much. The pain meds I was on, my four year old wanting me to be regular mommy and swim with her at the pool and me simply adjusting to being a mother of two was all a lot for the time. But we made it work and in the back of my mind I couldn’t help but worry about what was to come. My mother flew in to aid me in my recovery and arrived the day before the surgery. My husband and I arrived at the outpatient center and as I waited to see the doctor pre-operation. I heard the women in the bed next to me; she had a five year old daughter, was there for a procedure with her breast cancer and had just beat leukemia a couple years before. I suddenly felt dumb for feeling so sorry for myself. I woke up, in a great deal of pain and with what felt like a busted lip. I kept telling the nurse I was in pain. She sent the anesthesiologist in, he told me plain and simple…there wasn’t anything he could give me, to make it go away. I was told there was so much “dead tissue” and fluid in my breast that the surgery was a bit more extensive. I now had four tubs in that breast for drainage and one new incision, I was discharged. By the next day I was admitted into the hospital where I would spend the next 7 days missing my family while trying to fight the pain and be closely monitored. My mother thankfully was there to care for my two babies while my husband sat by my side. After being discharged from the hospital, I had nurses come to my home every day for a month. They changed my bandages and monitored vitals. Though the nurses were nice, it was the absolute worst part of my day. I had to mentally prepare daily for this painful routine. Towards the end of this month I started to get myself off of the pain meds and try to start living a normal life again. At the end of the month I went to visit my doctor, I feel like she’s been so supportive through this process and really doing the best she could for me. She had been on vacation for a week and found, in one of her text books, what seemed to be what I have had. As I looked at the picture as she read the description I cried, there it was after all this time…idiopathic granulomatous mastitis. “Idiopathic granulomatous mastitis (IGM) is a rare inflammatory breast lesion of unknown etiology that occurs in women of childbearing age; only a few hundred cases have been reported worldwide (1,2). A breast cancer mimic, IGM also is diagnosed by breast biopsy (3).” I am still working through this; the effects from my surgeries are long lasting, and in the research that has been done this type of mastitis is re-occurring. God willing mine is gone for good. My family has gotten me through this, but I had to share; for the mothers, mothers to be, anyone that may be going through something similar. I knew little about mastitis before, but often the response when discussing it amongst other women is that it is common. Mastitis may be but there are rare, painful forms of this condition that occur. Be conscious of your bodies, and be an advocate for yourself. I knew from the very beginning, when I was almost four months pregnant that something was very wrong with my breast. It’s easy for people to say that a lot of the things that happen during pregnancy are due to pregnancy. But it never hurts to ask your doctors to check it out! My OBGYN felt it (physically put her hand in the location of the pain) and immediately referred me to a specialist, knowing that it wasn’t just breast pain related to pregnancy. Everyone has their own story, so this is mine: Idiopathic granulomatous mastitis (IGM)

Be Well

-J