Saturday, April 28, 2012

Got extreme nipple pain?

Welcome to the world of nipple vasospasm and/or Raynaud's of the nipple.

I am writing this as a public service, because I thought I was being a whimp about nipple pain and losing my mind, and I think there are more women out there like me than the medical community realizes.

Note: It appears that the anti-hypertensive drug Labetolol can cause extreme nipple pain as a side-effect. A lot of women experiencing hypertension during pregnancy are put on this drug. See my comment below dated 11/01/2016 for NIH and journal articles.

When we are pregnant and nursing (breastfeeding), women are told to expect a certain amount of breast-related discomfort. When we complain about extreme pain, we are sometimes diagnosed with mastitis. If treatment for mastitis fails, then we're told it's probably a fungal infection, like thrush. If treatment for fungal infection doesn't relieve the pain, mothers are told to grin and bear it, or give up breastfeeding. Thousands of women choose to suffer through agony because they know that breastfeeding is what is best for their children. Thousands more give up on breastfeeding entirely, feeling inadequate as mothers and unsupported by their physicians. I recently learned that nipple vasospasm, and particularly Raynaud's of the nipple, are leading causes of breastfeeding failure -- and no one knows about it.

Really. I first started experiencing it at about 5 months in to my pregnancy, when I started taking Labetalol for hypertension. I finally spoke of the throbbing, burning pain, I was told some women experienced that as their milk came in, and that it would fade. I knew that this level of intense pain just couldn't be 'normal', so I started researching online.  It took me several hours of digging to turn up the information on Raynaud's/vasospasm of the nipple. My OB had never heard of it. She talked to another OB and that doctor told her she'd had a few patiednts with it over the years, but it was rare. I was referred to a lactation consultant who said my symptoms were characteristic of Raynaud's and recommended a medication(nifedipine) that I can't take while I'm pregnant. I have to wait until I'm breastfeeding. Meanwhile, I suffer.

What are the symptoms of Raynaud's or vasospasm of the nipple?
1-Extreme burning pain, the kind of nipple-on-fire pain that has you crying hysterically, wakes you up at night, doesn't respond to Tylenol, and makes you wish you could take drugs, drink alcohol, or knock your head against a wall until you find oblivion.
2-Extremely hard, puckered nipples and areolae, as if you'd been exposed to intense cold.
3-A blanching (whitening) of the tips of the nipples.
4-The areolae turn a very dark reddish, purplish, or bluish hue.
5-The edges of the aureolae sometimes turn a bright, angry red.
6-The pain lasts anywhere from just minutes, to over an hour.

If these symptoms are triggered by exposure to cold, it is called Raynaud's, otherwise, it is called nipple vasospasm. Whatever they call it, it is maddeningly painful.

I've tried Tylenol, sunburn gels, nipple ointments and numbing sprays, my hairdryer, warm washcloths, etc. The only thing that helps is a long, hot shower. The problem is, being pregnant, my tolerance for long, hot showers is pretty low. The other night I got out of the shower after 20 minutes, still with pain but bearable, and crawled into bed. 90 minutes later I was awake again. It took 30 minutes in a hot shower, with me feeling lightheaded and my knees about to buckle, before the horrid fucking pain abated.

I've experienced this for 5 nights running. I'm exhausted. I'm cranky. I'm dreading breastfeeding. As I emptied my dishwasher this morning, I was actually tempted by steak knives: I contemplated sawing off my nipples.

Several causes and treatments of nipple vasospasm are hypothesized. Causes could be too much caffeine, not enough B6 vitamins, exposure to cold, etc etc. Treatments recommended are heat, avoidance of vasocontrictors like caffeine and nicotine, ingesting vasodilators like nitrates, alcoholic beverages, niacin, and certain herbs. Based on the feedback I've been getting from other women, hypertensive meds, particularly Labetalol, may be causing this.

Ibuprofen helps some women, and Nifedipine usually works within days, and requires no more than 6 weeks at a low dosage to prevent recurrance. So the literature says.

I'm not sure what I'm going to do, especially on those nights when the pain outlasts my endurance of hot showers. Perhaps a bit of alcohol. This late in my pregnancy I'm not turning to ibuprofen and I'm not very tolerant of NSAIDs anyway. I might hit my doc up for prescription-strength topical lidocaine or procaine. Or maybe I'll get lucky and it will just disappear. I just know that I can't take another 23 days of this. 

I hope that my research helps other women out there who are going crazy with nipple pain.

http://www.nbci.ca/index.php?option=com_content&view=article&id=52:vasospasm-and-raynauds-phenomenon&catid=5:information&Itemid=17

http://www.llli.org/nb/nbjulaug99p120.html

PostScript:
I was at my doctor's office for a routine fetal monitoring when this hit again. I sat in the chair and cried silently until the RN came in to check the tape and saw me. My pain tolerance is legendary so she was shocked. She asked what was going on. I showed her my breasts. Dark purplish aureolae and nipples, with the tips a shocking grayish white. She went and grabbed my OB. She examined me, gave me lidocaine cream and hot towels but they didn't make much difference. She asked me if anything helped. I defiantly told her about 1/2 ounce of scotch or Bailey's Irish Cream worked within a few minutes and I figured such a small amount wasn't going to affect the baby. She said I was right. She said that the stress hormones I was pumping out due to that level of pain was much worse for the baby than a small amount of alcohol. So now I've got doctor's orders to drink next time I have one of these vasospasms. Whee!

37 comments:

  1. Very interesting. I had that pain with my first pregnancy - started at the end of the second trimester, and it was awful! I never asked about it because I thought it was all part of the expected breast changes... Thankfully, the pain stopped after the first weeks of breastfeeding, I even found breastfeeding during an "episode" (though excruciating at first) helped shorten the period of time I was in pain. Hope yours goes away very soon!

    ReplyDelete
  2. Thanks for writing this. I was not at all prepares for this kind of crazy freak onset of pain and it scared me at first. I'm 22 weeks and had the first incident a few weeks ago, again lasts week and again about an hour ago... It keeps happening in public places and j find myself discretely grasping my breasts trying not to scream or look like I'm out of my mind. Its annoying to keep being told that the pain MUST be associated with breastfeeding - as the one to be breastfed is still inside of me! fortunately the pain has never lasted more than 10 minutes, but its nuts to think there's absolutely no mention of anything like this in any of the pregnancy books of materials I've read :-(

    ReplyDelete
  3. Thank you for posting this. I am on my third week of this earth shattering pain. I finally saw the breast doctor today. I take labetalol for pregnancy high blood pressure, the pain started a day after i began taking same. The pain is as bad as you describe. I take 6-7 showers a day to ease the pain. i no longer leave the house because the pain has me on the floor weeping. I hope it gets better after baby as i plan on exclusive breast feeding.

    ReplyDelete
    Replies
    1. I just began the same medication for high blood pressure and now i am having the same mind blowing nipple pain. All i can do is cry and wish i could cut them off lol.

      Delete
  4. Same problem. I'm sixteen weeks, have had this pain since week eight and it gets increasingly worse each week. I have at least one episode a day. I use space heaters and blankets at my desk at work and I use a heating pad at home. When it starts to happen, I immediately take my bra off which reduces the pain by maybe 10% but better than nothing. Out in public, I have to get to the car if possible and blast full heat on my chest. (Did this in burgers kings parking lot, topless, crying uncontrollably). It makes me so mad that I feel this pain every day. Pregnancy is supposed to be this beautiful flowering thing but I'm ready to saw these bitches off. Worst of all, I haven't met anyone who can relate so no one understands. I've had 3 serious surgeries performed on my chest from previously having cancer and I've never taken both control. I don't drink milk with steroids or hormones. And my breasts are not very big, I wear a B. This is my first pregnancy. These are just some things that might be related but I doubt it. I want so badly to breastfeed for I am highly against instant formula but I can't sit there and cry the whole time. It sucks....

    ReplyDelete
  5. This is my first prrgnancy and I have been having this exploding nipple pain for weeks I'm only 13 weeks now and the only thing that helps is hot showers. I've been near tears several times but its mostly in my left nipple...it hurts so bad and my breasts haven't grown at all. I'm so worried I won't be able to breast feed can any of you reassure me that this nipple pain will lessen and I'll be able to breast feed?

    ReplyDelete
  6. Have all of you been able to breast feed no problem? I'm 13 weeks and have been suffering with nipple pain for weeks now...hot showers are the only thing to soothe the pain. I've been searching for answers to my exploding nipple pain and finally feel like I've found them! My breasts have yet to grow my nipple pain is more so in my left nipple and I am so worried I won't be able to breast feed. Please let me know!!

    ReplyDelete
    Replies
    1. Great news, I was able to breastfeed normally. I had just one episode shortly after giving birth, but it was relatively mild and didn't occur during a feed (whew).

      Delete
  7. I am experiencing the pain with my second pregnancy. I'm not sure I'm suffering as badly as some of you but the pain is impossible to ignore and has me walking down the road with my hands down my bra clutching at my breasts - very feminine! I do however have a 17 month old who I am still breastfeeding. I have found, in the last few hours, that feeding him seems to dull the pain. I wondered if people in their first pregnancy, or who are not currently feeding a child could try expressing. Has anybody tried this? Was I just lucky? Sympathy to all of you who come after. Especially as the medics really don't seem to be aware of this. I haven't spoken to a single midwife who knew what I was on about!

    ReplyDelete
  8. Thank god i found this!!!! I am only in the beginning of my third month of pregnancy and pain like this has been driving me crazy! All the other moms i know don't seem to understand the extreme pain and keep telling me that all moms get breast pain.....finally I am not just being a "titty baby" about the pain!!!

    ReplyDelete
  9. I had this happen when I was pregnant with my daughter nine years ago, before that I had a milder form where the nipples would harden and get sore but it would pass if I warmed them by covering them with my hands. When I was pregnant though, it was excruciating. Any hint of a chill and they would go rock hard and turn blue with intense pain shooting through them. I ended up filling the sink with very warm, almost hot water and dangling them in there because nothing else worked. I would be terrified to take them out again because the chill of the air could set it off again. I wish I had known then what it was!

    ReplyDelete
  10. I have had the same issue for all three of my pregnancies. It feels like someone poured acid on my nipples.The pain would make me feel like crawling out of my skin. It happened when I would get cold, and took quite awhile to calm it down. Now I finally know what it is. Thank you. It never affected my breast feeding either, and it stopped after I had each baby.

    ReplyDelete
  11. I experienced this with my first pregnancy towards the end of the first and throughout the second. It has now just hit with my second pregnancy at 20 weeks. I breastfed no problems my first child. And oddly its only my left nipple. So painful, not as bad as you explain but like the lady above I often resort to shoving my hand down my top to massage/warm the nipple. I'm going to try some nipple cream and hope that works! Thank you for your article.

    ReplyDelete
  12. Thank you. My lady is in pretty bad pain so I'll defiantly have her try a hot shower to soothe the pain. Ove again THANK YOU

    ReplyDelete
  13. I am 22 wks pregnant with my 4th and the pain is only in my left nipple. I find that expressing the colostrum seems to help alot. And ladies, you all should be able to breastfeed no problem

    ReplyDelete
  14. I'm sitting in bed, eyes watering, snot flowing like a river, left nipple looks dark purple, it's extra hard and feels like its got a burning frostbite. It's quite warm and I guess more feels like acid is on it. I'm 5 months pregnant and this has been occurring for 3 months sometimes right one but the left always hurts the worst. Bad days they both hurt at the same time. Today the pain woke me up from a dead sleep and has been the worst to date. This doesn't feel normal at all and I can't find any specific triggers and nothing helps either. I have to cry n bear it. I'm not leaking and haven't at all yet. First and only pregnancy as I'm 38 and still baffled and in disbelief that I'm gonna be having a baby. I'm kinda freaking out as the only time I felt similar pain but to a low degree was when outside in a snowstorm with my high beams on. I'd pay money to go back to that pain as this prego nipple horror is trying to ruin so many of my days. I'll mention it to my ob on next appt but I'm not sure I won't have chopped these mofos off by then. Glad I'm not insane or feeling it and amplifying it with my imagination or the sheer panic I feel when it comes on. If it keeps up I won't feel comfy leaving my home for fear it will strike in the middle of the mall and have me looking like a loon fondling my nipple and crying while looking for a dark corner to hide it. I'm amazed at how bad it is this morning and quite freaked out now fearing I have several more months ahead if me to expect this.....quite repeatedly. I miss my benzos that I had to quit taking for the sake of baby. Lord knows I could use one now! Thanks for sharing your stories. I'm sooo glad I'm not suffering alone.

    ReplyDelete
  15. Thanks so much for writing this piece, it has been really difficult to find information about what is happening to me.

    I'm 33 weeks pregnant with my first and have been having this problem since almost the beginning of my pregnancy, at first with just my nipples, but as the pregnancy has progressed I have been feeling the pain in both my breasts and nipples. I have found a lot of relief in using the "Magic Bag" type bean/wheat bags that you throw in the microwave. I microwave them for about 2 minutes and apply them directly to my breasts. I find the pain subsides within 1 - 5 minutes.

    ReplyDelete
  16. I experienced this the whole way through my pregnancy and winter was HELL. Apparently I was the only cold pregnant woman EVER as warm maternity clothes were impossible to find. I would go as far as to pin hand warmers to my shirt above my poor nips.Warm compresses and showers helped a bit. I ended up tucking a hot water bottle under my shirt during the serious cold snap (-17F) when I could NOT get warm - nor get relief. My hubby didnt believe me when I said how bad it hurt and that the car had to be WARM for me to get in it without wanting to die.
    God the pain. I had my baby and it was summer - it wasnt quite as bad. I had read your page here and done my research (my drs had never heard of this) One day I was sitting in air conditioning and ate ice cream and my nips went into full spasms - THATS IT I'M DONE. I went to the dr armed with knowledge - surprised yet another dr, she agreed that that was my problem and prescribed the nifedipine - worked with in days (though the initial headaches were wretched) still doing better than I was, but it isnt perfect.

    ReplyDelete
  17. Hmmm...so I am feeling this as well....been in tears several times throughout the last three days....I am 34 weeks today .....First Time Mom....whats different about my case is that i started labetalol (for hyperternsion) 3 days ago...and every time i take it , i have an episode of this horrific nipple pain....my doctors have basically laughed at me ....the lactation consultation has not , but really much help other then to tel me about Raynaud's....it would make sense that blood pressure meds which cause changes blood vessels could be linked ....anyone else on a beta blocker?

    ReplyDelete
    Replies
    1. OMG. As I'm reading your reply, I realised that this started for me just days after starting hypertensive meds also! I'll be bringing this to my doctor's attention at the next appointment.

      Delete
    2. I was on labetalol as well, switched to it when I learned I was pregnant (~15 weeks).

      Delete
    3. I have been put on labetalol since my 8th week of pregnancy, due to pregnancy induced hypertension. I was wondering if there was a correlation to that. I had it once with my first son, but later on. My second son who was born in February was a terrible winter. It started much later on. Actually the breast pain alerted me to being 8 weeks pregnant this time! All my tests had been negative so I had assumed I was in the clear until a week later when my nipples turned blue. My doctors don't seem to take this seriously either. I've not replicated it at the office. The one time I did, I jogged to the receptionist to get a nurse and it had gone away by the time I got there (presumably from quick activity and warming my blood). This time I am due December 25th and today was our first cold day of the season. It has started immediately as of waking. With my second, I had found this blog and mentioned your scotch remedy to them, and they said if I was in that much pain to do it, but I would like for them to actually research on it themselves as well. Thank you for writing this. I think I may print it out and show it to them at my next appointment.

      Delete
  18. Thanks to your blog, I was able to find out why I am having such agony and a few ways to help treat it. Luckily for me my OB/GYN knew exactly what was wrong when I spoke with her today, and I didn't have to go through an argument to receive help (though I was ready for one!). I can't say thank you enough.

    ReplyDelete
  19. Great news, I was able to breastfeed normally. I had just one episode shortly after giving birth, but it was relatively mild and didn't occur during a feed (whew).

    ReplyDelete
  20. Encouragement here: Just wanted to let everyone know I had horrible vasospasms during my pregnancy, every day maybe even several times per day, but was able to breastfeed just fine. Not long after birth, the vasospasms stopped completely .... I think they are related somehow to pregnancy hormones, so once the pregnancy was done they subsided. Breastfeeding was tricky for other reasons but vasospasm was not one of them ... I hope this is encouragement for everyone who reads this.

    ReplyDelete
  21. Omg the pain from hell! I'm 38 weeks tomorrow with #2 (#1 is 9 already - this'll be fun...) Thank you for the info on the vasospasms. It's absolutely ridiculous that docs aren't versed in this. I'm rather curious as to whether there's a link between labetalol and the pain. If I can remember, I'll see what my doc knows when I see her next week. I was started on labetalol almost 2 weeks ago, but due to my brain running far, far away, I can't remember if the pain started before, or after. I've decided there should be a very short list of things that a pregnant woman should have to put up with. This nipple pain is NOT on it!

    ReplyDelete
    Replies
    1. I know this is after-the-fact for you, but I just read your comment and realized that I was put on labetalol too, and that it intensified the pain tremendously if I remember correctly. Nifedipine removed the pain.

      Delete
  22. Hi
    My wife is first time pregnant with twins and she is having the exact same symptoms since the 5th month.
    She is now 6 months pregnant.
    The pain comes as attacks whihc lasts 1-2 minutes or sometimes more, every half hour .
    It's is a burning and very big pain and she keeps crying all the time .

    Our ob dr says everything is normal but after reading this blog that doesnt make any sense at all.

    So as a solution you are suggesting long hot showers?
    And nifidepine is not safe during pregnancy I assume.

    We will definitely harass the dr from now on
    Thanks for sharing this

    ReplyDelete
  23. I have this extremely painful nipple BURNING it gets so bad I wanna scream & in tears. Usually happens if I'm cold but I'm not pregnant & this has been happening for yrs!!!! My daughter is 8, I had a breast reduction in 98 & wonder if it is caused by that...... I just need relief the pain is close to labor pain!

    ReplyDelete
  24. I really thought this pain was in my head because no one seems to know anything about it.

    ReplyDelete
  25. Here is my public service… I too suffered pretty identically to you while pregnant. I, too, told several doctors, specialists and midwives, nurses etc. about it in desperation. Nobody had ever heard of it. I was hospitalized at one point during my pregnancy and happen to mention it to the doctors and they had a big meeting in the hospital about it, since nobody had heard of it. This was at Stony Brook Hospital in New York. They ultimately put me on Nifedipine, which, in contradiction what was written above, was acceptable to take while I was pregnant. It almost entirely got rid of the symptoms, giving me great relief. It was a living hell before, and Nifedipine was an effective treatment.

    ReplyDelete
  26. OMG, thank you! I've had these episodes sporadically, pre-pregnancy but they were mild in comparison and usually onset by cold temps. I am 13 wks and a FTM and have had two episodes already with no obvious provocation. I am no whimp but the pain is unreal, like a burning/needling, that is tear inducing, especially in public. I liken it to getting simultaneous nipple tattoos. No one has told me anything about this so I'm glad to know it just isn't me. I find that bra removal and breast massages help. Not convenient in public though. I usually have to run to the restroom and sort myself out. So embarrassing!

    ReplyDelete
  27. I found some journal articles that investigate the correlation between Labetalol use and nipple pain:
    https://www.ncbi.nlm.nih.gov/m/pubmed/23212937/
    http://www.lareb.nl/Signalen/KWB_2014_2_labet.aspx

    ReplyDelete
  28. I started labetalo tablet ysday night, couldnt sleep much ysday. Today morning i took the tablet, right after that nipples started burning. I am glad I found ur blog. So did the doctor advise to chnage tablet - I have a doc appointment next week.. hope until then i can bear this.

    ReplyDelete
  29. Wow I thought I was the only one person that had this problem. I'm glad that I found this site. I have been to many doctors and they didn't know what was happening to me.
    One doctor thought that I had thrush so I took some meds for that but it didn't go away. I had to doctors tell me it was a hormonal thing and I had to live with it. The pain was so torturing that I would cry uncontrollably. It would start at the top of my breast and work it's way down to my nipples. It was a burning stinging pain that would not go away with tylonal or hot compresses. The only thing that helped was hot showers. I would have at least 5 hot showers a day. I started to do some research online but could not find anything. I finally found something online about blood pressure meds and ranauds syndrome. I found out that labetalol cuts off blood circulation to the breasts. I decided to stop the meds and it went away. I found a really good doctor that knew everything about ranauds syndrome and he prescribed me nifedipine which helped. Thank you so much for this article, it had helped me and it will also help future women in the same situation.

    ReplyDelete
  30. OMG FINALLY AN ANSWER!!! I have been complaining to my OB for WEEKS with this! I have woken up at night in tears, taken many hot showers for as long as I can stay awake! Slept with a heating pad on my chest. I was pretty much told I have to just grin and bear it. But OMG the pain!!! It has kept me from working! Shopping is killer when the pain suddenly hits! Now that it's hella cold out, it seems to happen more often and I'm just dying!

    When I saw your article, I started reading thinking it was yet another dead end... but then I saw Labetolol! I TAKE THAT!!! In fact, my dosage was increased because my BP was too high! I am definitely sharing this article with my OB so she can hopefully help me. (thus far she's been clueless)

    I swear I will name my child after you.... THANK YOU!!!!! (every single symptom is EXACTLY what I go through!!!)

    ReplyDelete
  31. I know this is an old post, but thank you! I am on baby #4 and am nursing through pregnancy this time. I though I was going insane...halfway across my state on a 7 hour drive and I am in Taco Bell ready to scream in pain begging my toddler to nurse! Nursing and hot showers are th the only things that help. And now I have to drive three more hours with this aweful pain :( But at least I know I am not crazy.

    ReplyDelete

I'm not sure how good the Blogger spam comment filter is, so I'm moderating all comments for now.