Worried about IBC...any reassurance appreciated

bcopi

Hi there.  I am 34 years old and had a baby exactly 6 wks ago.  When he was a week old, I developed a sudden fever, chills, aches, and very sore left breast.  The breast became red, hot, swollen, and extremely painful.  I was diagnosed with mastitis and the treatment was to stay in bed, drink lots of fluids, and nurse as much as I could.  I did and it went away within a few days.  It came back the following week.  Same thing.  It came back a third time (3rd week), but also the right breast was a little red as well.  Repeat treatment.  Each time I would get better and then I would resume normal activity like grocery shopping or something and it would come right back.  It was like my body couldn't handle fighting it.

 So the last time it came back when he was 5 wks old (so 5th time in 5 wks), it was just on the right breast and was the worst ever.  The pain was intolerable, my boob was huge, I had red streaking down my arm, etc.  I had had it.  I finally went to the doc for antibiotics.  I had been avoiding them because I didn't want my son to be impacted by them, but I was tired of suffering.

So I go to urgent care and the doc was an over the top nut.  He told me I was "this close" to being hospitalized for the infection, I would lose my breast if I didn't take action immediately, and I should be looked at for IBC.  I was given IV antibiotics and a 10 day oral course of antibiotics.  I felt better immediately.  I haven't felt this good since the week after my son was born.  

I figured all was good, but the doc kept calling me telling me to go to the breast specialist because it was recurring.  I figure it was the same infection coming back because I hadn't take antibiotics and my body just couldn't fight it off.  So I finally decided to go and I went this week (last day of abx was yesterday).  She told me she spoke to that doc and she thought he was nuts too.   She didn't seem all that concerned, but did an ultrasound of both breasts.  There was slight thickening in the left breast (not the right that was the one that sent me to urgent care), but she said it was slight and she thinks it will go away on its own.  She wants me back in two weeks to recheck it, but she thinks it will be gone by then and she also wants to see if the slight pinkness I have is gone too.  

 So all signs point to mastitis since I had redness, swelling, fever (sometimes as high as 103), body aches, chills, and a high white blood cell count at urgent care.  My pulse and blood pressure had been high too indicating an infection.  My symptoms cleared up dramatically after antibiotics too.  All sounds mastitis-y, right?  I just worry there could be something more.  I'm a first time mom and I am breastfeeding so I don't know what is a normal change and what is not.  My remaining symptoms are:

- occasional soreness in my right armpit (but she ultrasounded it and didn't see anything)

- very slight pinkness to my skin, but it's slight

- pain when he latches on sometimes, but it's not like it was and it's only on the left

- sometimes I feel like I might be itchy, but that's not the best description

- aching feeling, but I also have Raynaud's syndrome, so it could just be that

- edema at times...like my bra might leave an indent

- sometimes the areola on my left breast contracts funny...like you know when you get cold or turned on and it contracts?  Well it will do it half way or just in one spot or something.  It did it while I was at the office and I showed her and she didn't seem concerned.

- when my left areola is contracted, it looks like there is a line/ridge at the bottom, but otherwise it looks normal.  When it's not contracted, the areola looks completely normal in all ways.  

- left areola sometimes changes color when I raise my arm (only when I raise my arm and only if it's contracted).  Started in pregnancy.

 I don't have any redness, scaling, bumps, orange peel appearance, change in breast size, swelling, warmth, or discharge (other than milk).  She said she didn't see anything that made her overly concerned, but she wanted to see me back.  

My husband is trying to reassure me that all is fine.  He thinks it seems highly unlikely that I would develop IBC and mastitis at the very same time and I don't really have obvious symptoms.  I know IBC can often be mistaken for mastitis, but I think it's very clear that I did in fact have mastitis.  

I just hate the "what if" and I also hate not knowing what is normal breastfeeding feelings and what is something wrong.  I think it's common to have some aching, soreness, and maybe even some itching when you are a new mom.  I may even have the start of thrush since the itching just started and I was on antibiotics for 10 days after an IV round.

Any reassurance would be much appreciated.  I hate worrying.  She said if the thickening is still there, she will do a biopsy, but she thinks it will be gone and is just leftover inflammation.

Thanks so much for any words of support.  Sorry this was so long.

ibcmets

Bcopi,

Read your story.  I have ibc and I don't think your symptoms sound like you do.  It's seems like a bad case of mastisis.  I had no pain with my ibc or fever but had all the classic symptoms...bug bite look, red rash, warmer & a lot larger than opposite breast plus the orange peel appearance.

Glad you had the ultrasound as I believe it would be better detecting the thickness & changes in the breast than a mammogram.    Antibiotics do not relieve ibc symptoms. 

Go back to the doctor if you continue to have symptoms.

Terri

Faith316

I think it is probably mastitis, especially since you recently gave birth and are nursing.  But, you are right to have it checked.

Laura_Jean

Since you are nursing AND since antibiotics cleared up most of the problem, it seems most likely that it was mastitis. IBC would not respond to antibiotics.

Good that you had it checked and if there is any more swelling, certainly get checked again - it could be that you are getting repeated infections from clogged milk glands or it could be thrush.

With my first baby, early on, my breasts would sometimes get so hard and full of milk that he would be unable to latch on and I would have to pump some out so that the breast would soften and he could get his little mouth around the nipple and get some milk out! In time that problem resolved. Also, if I was wearing a bra and hadn't nursed for awhile (meaning like 4-5 hours at that point!) there would be some pain and swelling.

Best,

Laura Jean 

chester2010

Your body is going through all kinds of changes following the birth of your new baby and breast feeding.  It does sound like mastitis as it did respond to antibiotics.  But it is obviously a very bad infection and not very pleasant at all. Please take care and return to the doctor if things don't improve and you're still worried. 

Anonymous

It appears that each woman that has replied is a survivor.  Congrats to them and I pray they continue to get well.  In June of 2010, I came down with the exact symptoms as you (redness, swelling, fever, nausea) except for the fact that I haven't delivered a child in 22 years.  I was 47 at the time, now 49.  My mastitis came out of nowhere.  I didn't even breast feed in 1988, so I was mystified and scared that it was going to be a misdiagnosis and that I may possibly have had IBC.  I did the entire antibiotic regimen all last summer, ultrasounds, etc.  The breast surgeon that was monitoring me was wonderful and she saw some thickening also.  I still feel "something" in my right breast but it is minor and I do continue to have occasional lumps in my armpits.  They tend to come and go so it must be connected to different hormone levels.  It sounds like you are on the right path and I wish you and all the others the best.  Good luck with your new son!

 Regards,

Kathy

bcopi

Thanks everyone.  The mastitis ended up coming back 1 week after I stopped the antibiotics.  My sore joints and the slight pinkness never went away and then last night I got a fever/chills, got achy all over and boob is flaming red.  This time it's the left one again.

 I went back to the doc and she did another ultrasound.  She said she didn't see anything concerning and put me on a different antibiotic for 14 days.  I told her how my areola sometimes wrinkles/puckers in just one spot.  She seemed concerned about that, but then said she would mainly be concerned if it stayed like that...not when it comes and goes.  It happens in both breasts which she also said means less case for worry.  Have you ever heard of the areola wrinkling in one spot or half way before it either relaxes or completely puckers?  I'm talking about the normal pucker we get when we're cold or aroused.  Sometimes mine just do it partially temporarily.  

 Anyway, she said it seems like mastitis, but we won't know if it's something more serious for a couple weeks when we see how I respond to the antibiotics.  I'm so sick of worrying though.

Thanks for the reassurance.  I appreciate your input and you are all in my thoughts.

anonymice

bcopi,

You have absolutely had an infection, without a doubt, but unfortunately having mastitis does not mean you can't have IBC.  In the very rare case a nursing woman does develop IBC, those outcomes can be poor because necessary treatment is put off for so long treating infection only.

My IBC case was caught pretty early...I definitely had areola puckering and nipple retraction that came and went.  You can have just 1, more, or all of the symptoms of IBC and still have a positive diagnosis.

I am not trying to worry you, naturally - IBC is rare, and you certainly have infection.  But you're absolutely right to pursue it as you have. 

bcopi

Thanks for your reply. The specialist said that she isn't all that concerned if the areola doesn't stay half way puckered and because it happens on both breasts. I've never had any nipple retraction. The puckering I've seen looks normal, it's just that sometimes it doesn't do it all at once. I'm going the antibiotics get rid of all the pinkness. The redness was gone after two doses of the antibiotics, but there is still some pink at times. The pain while nursing is way better too. What did your puckering look like? The examples of puckering I udave seen look nothing like me. In fact, none of the pictures look like me.

bcopi

Also, does it seem unlikely given:



-I for sure had/have mastitis (fever, chills, etc)

-it's been on both breasts, but usually one at a time

-any weirdness I've seen appears on both breasts

-no enlargement, nipple retraction, persistent redness/itchiness, texture changes

-the symptoms respond to antibiotics immediately, it just didn't get rid of the infection all the way, but I just learned ammoxicillin isn't the best for mastitis and now I'm on keflex



Those are all signs suggesting it's not IBC, right?

anonymice

Yes, those are all "good" signs that you do NOT have IBC.  Even the majority of folks that post with many of the symptoms don't have IBC.  It's not as rare as reported - that is becoming clearer - but it still is quite rare.

Claudia413

As a 4-yr survivor of IBC, I would just suggest that you stay on top of it. If things don't totally clear up and especially if your baby refuses to breastfeed, you should then get your doctor to "rule out IBC" and put your mind at ease. Please let us know how you're doing.