HELP! Discharge and Flaky/Crusted Right Nipple for 1.5 Years
I am new here and am in need of advice and thought this would be a great place because I have been so encouraged to see active responses.
So here is my story: I am currently 24 years old and about a year and a half ago (I was 23), I noticed one day that my right nipple stuck to my bra while I was changing. I noticed some clearish/white discharge on my bra and thought it was odd. I continued to monitor it and the discharge kept happening everyday for two weeks. I assumed it was an allergic reaction, so I decided to switch my laundry detergent and buy some new bras. I have fairly sensitive skin and don't really use any scented lotions or soaps. Still no relief. I also noticed that my nipple was starting to get flaky and the top layer of skin would peel off.
About a month after I first noticed the discharge, I went to my doctor and he suggested that it might be an infection. He gave me a shot of Rocephin antibiotics and also gave me some Septra antibiotics to take orally. I had no relief, so I went back and he gave me another shot of Rocephin and gave me two weeks worth of amoxicillan to take and also suggested that I use an antibiotic ointment. Still no relief. I went back after two weeks and he gave me another shot of Rocephin and another set of antibiotics (I honestly can't remember the third set I took). Still no relief. At this point, the scaling/crusting covered my entire nipple and areola and the discharge was a straw color and there was also blood present. I started using non-stick pads to cover the area, so I wouldn't leak onto my clothes.
It had been about three months and I got pretty frustrated and decided to see another doctor. This doctor looked at my chart and at all the antibiotics I took and thought that it might actually be eczema and not an infection. She prescribed me a steroid cream and told me to take it for a month and come back if it didn't get better. The steroid did help a bit with oozing, but it remained scaly and crusty and the discharge would come back as soon as I stopped the steroid. I went back and she prescribed a different topical steroid for me to try and told me to take it for two weeks. Still no relief, same results as the first steroid. I went back and she suggested it might be a fungal infection, so she prescribed me an anti-fungal cream. This stuff was completely useless and did nothing to relieve any crusting or discharge.
It had been about 7 months that this was going on, and I got so discouraged. I just decided to deal with it on my own out of frustration and started looking at natural remedies for eczema. I used some essential oils, kukui nut oil, and I just tried using a moisturizer to help with eczema. None of this stuff helped, but I kept trying out of denial. I did this for about 5 months (I regret waiting that long to seek out other opinions, but I was honestly just in denial and scared).
At the year mark, I decided I wanted to see a specialist. I made an appointment with a dermatologist and she went over my history and examined my breast and nipple. By this point, my entire nipple and areola were completely crusted/oozing and the whole skin on my nipple was thickened and bumpy (my left nipple was completely smooth and normal). The breast skin around my nipple area also thickened a bit and seemed almost leathery in texture? I couldn't feel any lumps in my breast, but my right armpit gets a bit sore. The first thing she said was that it looked like Paget's Disease and wanted to do a biopsy right then and there and wanted to schedule me for a mammogram right away. She took a punch biopsy of the area and also prescribed me a new antibiotic ointment to see if it would stop any of the oozing. The result of the biopsy was negative, but she still wanted me to get a mammogram. The breast imaging center called me and said that they wouldn't allow me to have a mammogram because I was so young and since my biopsy had been negative, they didn't want me to have unnecessary exposure to radiation (understandable). They suggested that I get an ultrasound instead. The ultrasound showed no irregularities and then the dermatologist said that it is probably just stubborn atopic dermatitis/eczema and prescribed me a stronger steroid cream that would supposedly "knock it out".
Well, I have been using that steroid cream for about 5 months now, (2 weeks on and 1 week off at a time). On the weeks that I am taking the steroid cream, the discharge seems to stop, but my nipple is still flaky and crusted, and the day I stop taking the steroid cream, the discharge comes back and it becomes just as oozy. I had called in July for a follow-up with the dermatologist and they didn't have any openings until the end of November, I asked to be put on their cancellation waitlist. I decided to just wait patiently and continue the on-and-off routine with the steroids and hope that there would be a cancellation.
This week, I realized that it has been a year and a half and it has only gotten worse, never a single day of normalcy. I decided to get more assertive and called the dermatologist and said that it was urgent and I needed to be seen as soon as possible. I also called to make an appointment with another dermatologist to get another opinion, and I have also made an appointment with an OB-GYN to talk about possible breast diseases. So, luckily I will be seeing a dermatologist next Tuesday and the OB-GYN on Thursday and another dermatologist in a month.
My nipple and areola and currently still flaky and crusty and there is still blood and straw-colored discharge. The breast skin around my nipple is still leathery and thick and is a little discolored and looks stretched. There are now also little scabs(?) on the skin of that breast. My left side still looks completely normal.
If anyone has any advice or knows what kind of questions I should ask my doctors, PLEASE HELP!! I apologize for the length of this post, it's been a pretty long process. And if you have read all of this, I appreciate you so much! Hope everyone has a great weekend!
p.s. I forgot to mention, but it is itchy LIKE CRAZY (although I try my best not to scratch it at all) and the nipple area is uncomfortable and burns. Also, I've never breastfed/had any kids and my grandmother died from breast cancer, but I don't think she got it until after she was 50.