So as I have stated before, I have Pyoderma Gangrenousm.
It all started over a year ago, I had extreme breast pain and all of my doctors wrote it off as a pregnancy symptom. This was my fourth pregnancy and I immediately knew that this was something different.
Well I had my son and my breasts filled up with milk and my right breast hurt so much more and once again all of my symptoms were written off as something else, breastfeeding pains from engorgement.
I had gone to the emergency room for the pain after maybe three months or so of this “engorgement” and they did do an ultrasound which they said showed a cyst and refered me to the Breast Center.
The Breast Center got me in about a week later and examined the outside of my breast and couldn’t feel the lump in my giant size G breast and said that it was most likely from breastfeeding and that it would go away on its own. No further tests were done because with my age I was unlikely to have any serious breast issues.
About four months after my son was born and I had been breastfeeding in pain I started getting boils all over my chest that were warm to the touch and hurt so bad. I was told by my family doctor that I had staph infection and that I needed antibiotics. This went on for the next nine months or so. I stopped breast-feeding because it was just too painful and I didn’t want my son to get an infection. I dried up within a week of stopping.
My family doctor finally swabbed the sites, ya know like nine months later, and it came back negative for staph so I was refered to a dermatologist who after the first look at the boils said that I had something called hidradenitis suppurativa. I was told that the breast pain was just from the HS. I was given some steroid injections to bring down swelling and prescribed mupirocin ointment 1% and clindamycin gel 1%.
There was no staph infection and I was wrongfully put on antibiotics for so long and it was killing my gut. I did develop c-diff from all of the antibiotics and had it for five whole months. FIVE MONTHS of pain and pooping my brains out with my boys trying to sit in the bathroom almost every time. I still can’t eat whole meals.
The pain was consistent in that right breast, the boils didn’t hurt anything like it. The pain was deep and tender.
I started to get a small red spot in the right side of the right breast where this pain had been for so long, it got hot to the touch and grew drastically in size over the course of a week or so. It didn’t even come to a head or anything though.
I started feeling a hot stabbing pain and started sweating and shaking profusely. I decide to look and see how this spot on my breast looked because it was hurting like never before. My bra was full of pus and blood, my brown shirt was soaked down the front and I was in shock for a few minutes trying to process what had happened. I had no trauma or anything to the breast. I was simply walking into my kitchen when it happened. I washed up and got a large band-aid to cover the, for a loss of what else to call it, hole. I called the dermatologist and made another appointment.
Well I go to the dermatologist and they just said that it was a normal HS bump that popped and they swabbed it to be safe, cleaned it up and then injected it with steroids. (Standard HS treatment)
The swab came back clean. The hole kept growing and leaking more and more infection. I was having major irritation from anything that was taped or bandaged on. They assured me that It was probably nothing serious and gave me a prescription for silvadene cream 1%. They took a tissue sample and sent me on my way.
The tissue sample didn’t show infection but with all the leakage and how much wider the hole got they came to a diagnosis of Pyoderma Gangrenousm. I had all the dermatologists in the office looking at it and talking to each other, it was scary. PG is rare and extremely rare in the breast.
Dermatology does not treat PG. I was sent off to wound care to have the wound kept clean and treated. My dermatologist would no longer see me or advise any medical treatment, it was over their head. I had no doctors treating this disease and most did not know what it was.
I made an appointment at the breast center. When the doctor had seen the wound she had advised me to pack it with peroxide soaked gauze. It hurt so bad and she had showed me how to do it. She hadn’t heard of PG before. I had explained that my grandmother had died from breast cancer and that she had really aggressive cancer in each breast twice then in both lungs and eventually it spread everywhere. I asked for a mammogram or a biopsy and was told that I was to young to need one. (More age discrimination by a doctor.)
Well I finally get to the wound center and they tell me that the PG has killed most of my breast. The tunnels are so deep and we need to figure out why I have this. They also let me know that the breast doctors instructions were really bad for the PG. The peroxide had made the tunnels even deeper and probably increased my healing time by months and possibly years. My wonderful wound center people took down all of my breast doctors information to inform her of this. After we find the underlying cause I can start treatment and then have surgery to remove all of the necrotic tissue.
I have a size G breast cup and to have that much necrotic tissue is so painful and could lead to further issues and infections. I will not have a right breast after this is over and wont be able to have any surgeries after for a whole year to make my chest look somewhat normal. I will have a single G cub breast for a whole year.
No doctor is on the case to get the disease under control. I was told by a rhumatologist that I had to have chrons because that’s all that could cause this. (I hated this appointment with the rhumatologist and I will NEVER go back, I will tell that story another time, you will want to hear it.)
I had an appointment with GI and testing, NO CHRONS! None, but we are looking into the possibility of celiac disease being the underlying cause. I’ve had blood work and everything so just waiting for it to come back.
It has been five months so far with this breast dying and my whole body going through hell. Something has to give.
All of this physical and emotional stress is really starting to get to my family and to me. I have started therapy and will see a psychiatrist in two weeks to help with the mental side of everything going on.
The Pain Dr had sent a notice to the CDC doctors to clear me for epidural injections so maybe they will decide to treat me now.