Vasculitis or connective tissue disease breast involvement?
I'm a 32 YOF, still in the process of being gaslit, er, I meant diagnosed. I'll do my BREAST to tell my story quickly lol.
About a month ago, my breasts started getting insanely itchy out of nowhere. It would just come in sudden bursts, mainly near the area where my normal skin meets the areola. If I give in and itch even lightly, the blood vessels would burst under the skin in a really dramatic way that is unusual for me. Around the same time the itching started, I began feeling super engorged randomly, no matter what part of my cycle I was on. I hadn't breastfed since March of 2022. I showed my hematologist the broken vessels and she had literally zero feedback. I felt really stupid for even bringing it up to be honest. But then a few days later, I had what looked like milk come out when I gave my husband a hug in the morning before he left for work. There was so much that it transferred through my tank top and onto his shirt. I thought it was super odd and I felt some tenderness in both breasts. Later that night, I saw yellow discharge just sort of "hanging" from my nipple. I gave a very light squeeze and blood started coming out. Since then (a couple of weeks ago), I've had every color of discharge come from the same nipple: white, yellow, blood, pink, clear. It's all been spontaneous besides that first time I gave it a little pinch. Sometimes both nipples themselves are tender, sometimes I have crazy engorgement feelings (usually after eating or drinking black coffee). It waxes and wanes and sometimes the feelings are very mild and in the background. The itching comes in short, random bursts as well.
I had my prolactin and TSH checked, both very boring and normal. A mammogram and ultrasound last Friday showed no mass, no obvious duct issues, or anything else of note. What I found odd and let the doctor know is that when they did the mammogram with all the squeezing and pulling and smashing, I had no issues at all. But when they did the ultrasound with the warm gel and very light doppler pressure, that triggered the engorgement and discharge.
Because all of my breast symptoms came about at the same time other systemic symptoms popped up for a particularly nasty flare, I'm convinced this is connected to the autoimmune stuff, but I can't get a single doctor to listen. The breast specialist actually said as she was going over my "normal" imaging, that sometimes these things just happen...like am I insane? I literally want to scream or cry or both? In what world is this normal?
Anyway, I'm sure it's not common, but I'm hoping someone else can relate and help me understand what's happening? I think the next step is an MRI, but that's IF the doctor agrees and my insurance will cover it. I did have my ANA turn positive in November, but Rheumatology is pretty uninterested because it's only 1:160 and Wash U says that isn't clinically significant to most rheums. I have RNP ab (2.4 and 2.2 at two separate labs a few months apart), a very mildly elevated CCP once that's since turned negative, and slightly elevated Tgab with normal TPO and thyroid function. I've had a whole lot of abnormal labs in my CBC and CMP over the last 7 years, but nothing enough to get anyone's attention except for in 2019, a few days post delivery of my first son, I needed three units of blood transfused when my hemoglobin dropped to a 5.6 with no hemorrhage. I had what they referred to as "mild preeclampsia", but it was just chalked up to a weird postpartum thing. I also had slightly elevated NRBC's during a severe flare up last January, but since they haven't been abnormal on follow up labs, it's been dismissed as well.
If there's any other info that would be helpful, I'm happy to share it- just didn't want to yap your ears or eyes off!
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@akerslauren it is a very rare disease like two in 1 million and from what I understand most doctors don’t know too much of anything about it.
I have had a similar situation. I had a disease that was three in 1 million and nobody really knew what to do with it except for the doctor that diagnosed it. anyway my suggestion is to read and get as much information as you can about it and teach the doctors that you go to teach them what you’ve learned sometimes they get angry with that but that’s what I did I went and I said no it’s this because it has this this and this as an example I made sure that they understood what the problem was and what I was dealing with it worked well I got the help I needed it finally.
Ask how many patients have you seen and helped who have this disease.
I’m so glad to find this group. I’m sure where to start a post, so here I go. I was diagnosed in January with autoimmune disease. P Annika. I was given a very strong dose of steroids for three days because it attacked my kidneys. I do not feel sick. It’s just it’s attacking my white cells in my body.
Sorry I wasn’t finished. I was saying I wasn’t sure where to post.
I am believing that by my disease has to do with my breast. My MRI shows no indication of anything going wrong but the brain fog is getting so bad. I had two friends have theirs taken out and I was told that it cleared up. I have found two doctors that will extract them, but neither one will tell you that the breasts are the problem. The three doctors that I have mentioned it to have no clue that breast are a problem.