Thank you - I have been thinking of you and hoping you got the all clear at your appointment? I lost this forum so sorry for delayed response! I'm waiting for biopsy results...

@hockeywife86 I know this thread is very old now, but I'm currently 24w3d pregnant with my first baby, and I am experiencing virtually the same symptoms you reported on both breasts, on the inside of them and beneath the nipples (onset was 10 days ago). My breasts are very tender, warm to the touch, and sometimes at night I even break out in a sweat on them. My nipples haven't inverted, and I've leaked a small amount of clear colostrum a few times out of my right breast. The redness and swelling seem to respond to cold compresses, which I was hopeful meant it was a milk issue, not a cancer one (until I made the mistake of googling whether IBC rashes could fluctuate, and now I don't know).

My OB treated me with a course of antibiotics, thinking it might be cellulitis or mastitis. But it hasn't cleared up, and so I have a breast ultrasound and possible biopsy on Monday. I am beyond terrified it's IBC. I can't stop crying, and I'm sure the hormones aren't helping with that. I know that bilateral simultaneous onset IBC, especially in a pregnant woman, would be extremely rare, but you know how the brain works... in my mind, I'm dying, and I'll need chemo while pregnant.

I can see you had your son and are four years on now (and TTC again- I wish you the best! This baby is my rainbow baby after 8 years of TTC and two rounds of IVF), so I'm assuming you're okay. But I was wondering if you ever went for that ultrasound and what the findings were.

I don't know if you or anyone else will see this, being such an old thread. And I'm so sorry for dredging up old ghosts. But I'm desperate for hope right now. I'm so terrified I will have bilateral IBC and of what that might mean.

This was an ancient thread, and I never did receive any replies from the original posters or from the community, but I thought I'd update anyway for any women who may one day be googling in a panic and find themselves here. (The worst is finding someone whose medical condition matches your own, but they disappear without an update, so your frantic mind automatically jumps to the worst-case scenario: of course they're dead).

I had a breast ultrasound yesterday at a breast imaging center and met afterward with the doctor who reviewed my images. She told me that whatever I am dealing with appears to be a benign condition confined to the skin: there was nothing unusual going on with the breast tissue itself. No lumps. No weird lymph. No ductal problems. Nothing, aside from the skin thickening that accompanies all redness/rashes/inflammation to indicate bilateral IBC. She said that bilateral IBC, although it's possible and is something she has seen, is *extremely* rare. She put my odds at having it at .01% based off what she saw. She said only a biopsy could definitively rule out any sort of malignancy but that she saw no reason to perform a biopsy at this time. She referred me to a dermatologist, who I'll be meeting with late next week, as she thinks I'm dealing with a bacterial and/or fungal infection on my breasts (which she also examined herself).

So I'm not quite sure what I have, but it's 99.99% certain not to be bilateral IBC. One OB thought it was mastitis or cellulitis. One OB thought it was vascular. The breast specialist thought it was a bacterial or fungal infection localized to the skin. Perhaps it's just hormonal... I have no idea. But to any woman googling and feeling so scared and alone because this is happening to her, please- please- hang in there. Follow up with your doctors, of course, and if they or you are concerned, please get a breast ultrasound and/or biopsy. But know that there are a lot of benign things that it could be, and that it's possible it may never get explained. Conditions like PCOS are SO common compared to this, and we still don't really know what causes it. There's a lot we don't know about women's health because the research just hasn't been done. But don't let that cause a meltdown- I know from first-hand experience how terrifying and dark the thoughts can get.

I'll update if I ever figure out what it is that I DO have. One thing I've been trying at home is using anti-dandruff shampoo on my breasts in the shower. My symptoms present a lot like rosacea, and zinc is a great way of combating that. I don't know if it's wishful thinking or just a coincidence or if it's really helping, but whereas showering used to make my rash worse, now when I get out of the shower the redness/pinkness is visibly reduced. I'm going to mention this to my OB and dermatologist. Just thought I'd bring it up here.

Oh: and (ice) cold compresses have been helpful. Talk to your OB if you're concerned about suppressing your milk supply, but if the inflammation or discomfort become too much for you, give a cold compress a try.

I'm not pregnant, but what you describe sounds a lot like my eczema. You are right though that anything dealing with your breast should be consulted with a physician. Most people thing itchy dry skin, but mine doesn't look dry and can become painful under my breasts and in my cleavage area. I finally had enough with trying to deal with it at home with hydrocortizone and went to a dermatologist. I now use a very thick heavy lotion when I get out of the shower and when I have a flareup I have a cream that's slightly more potent than the hydro cream.

Whatever it is, I hope all turns out well for you.