It took about 6 weeks and multiple doctors for me to be diagnosed with Granulomatous mastitis (GM). Even then, none of the doctors or specialists I had seen had really come across patients with this condition or had any real answers on how to treat it. I had very little information on how the condition was expected to progress, and even less information on what I could do to alleviate the extreme pain and discomfort.
It all started with a sore lump on one breast that felt like a large bruise. After a few weeks the pain went away but a distinctly solid lump remained. I had an ultrasound, mammogram and core biopsy at a breast clinic, but these left the doctors puzzled as to my diagnosis. I felt confused and it worried me that a breast specialist couldn’t diagnose what I had.
A few weeks later, another sore lump formed on the same breast, this time there was significant inflammation, I was feverish and in extreme pain. The breast clinic did a fine needle aspiration (FNA) but found no bacteria. I was treated with antibiotics, but these had no impact. Several ultrasounds saw no significant change in the underlying tissue and at this point the breast clinic doctor recommended an incisional biopsy. I was booked in for surgery.
By this stage I was scared as I had symptoms of inflammatory breast cancer, was going into surgery but still had no diagnosis. I sought another opinion from a specialist breast surgeon who squeezed me in. That morning I got a call saying my surgery was scheduled for 4 hours after my specialist appointment. The specialist determined that as long as didn’t have cancer, there was no need for an invasive biopsy and I most likely had GM. So, I quickly cancelled the surgery and went for another core biopsy to rule out cancer.
That came back clear so I was put on more antibiotics and to ‘wait it out’. I was still in a huge amount of pain and on constant painkillers. Abscesses had begun forming in the breast tissue and after about 2 weeks they burst and finally the pain eased. This left me with wounds that just wouldn’t heal. I was fortunate that I had access to a wound clinic which helped with dressings, however the nurses there had also never come across my condition before.
It wasn’t until I researched and met with another doctor and then found a Facebook page that I realised I wasn’t alone in this rare disease. I also realised I didn’t need to find a ‘cure’ and there wasn’t going to be a clear-cut treatment.
I researched some supplements and decided to improve my diet and do some more exercise where possible. Since the initial abscess I’ve had about 6 more drain and cause wounds, but these have finally healed after about 5 months. The whole process has been about 9 months to date. I wish I had gone online and found a support network earlier on. The biggest challenge for me was accepting the disease had no specific ‘cure’, that there was no obvious medication to take. Once I realised this I was able to focus on improving my lifestyle and mindset which I think assisted in my gradual improvement.
My advice to other women with this condition is to find a doctor who can support you through the process, accept that it takes time for this disease to resolve and seek support online from others who have been through it.
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