Untreatable breastfeeding pain, but no plans to stop nursing--anyone else? - Page 4 - Mothering Forums
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#91 of 101 Old 06-17-2011, 06:28 AM
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Hi everyone,

I've been following this thread off and on for several months, and thought I'd join in now. 

 

gemasita - I'm so glad to hear that you've found a reasonable explanation at last!!  I really hope that treatment works, and soon!. :)

 

I've posted about our issues in other threads, but the gist is that our daughter is almost 5 months old, and had an undiagnosed posterior tongue tie and upper lip tie that finally got corrected at about 3 months by a pediatric dentist who uses a laser to do revisions.  We had strong burning/searing pain while feeding from the first moment she latched on after birth, which progressed to a constant excruciating burning feeling all the time.  I also ended up with constant vasospasms (during and in between feedings) and painful letdowns.  After seeing two lactation consultants to no avail, I started using a nipple shield at about 10 days, and wasn't able to get off it again until our daughter had the tongue tie procedure.  (In the meantime, I got treated for yeast repeatedly, for an unusual bacterial infection that showed up in a nipple culture, and took drugs for vasospasm).  The first week our daughter gained weight well, but after that, we had to pump and supplement to keep her weight gain up - after the tongue tie procedure, she immediately gained a pound over several weeks.  She was feeding for 1-1.5h before the procedure and I could never tell when she stopped "feeding effectively" because it all sounded the same - after the procedure, I was finally able to feed her without the nipple shield, I could audibly hear her gulping milk, and she now can eat in less than 10 minutes sometimes (but never takes more than 15-20 min to eat). 

 

The pain got better right away after the procedure, but it was still there at a lower level, and it has persisted for the last 2 months.  I can tell now that it is from nipple trauma b/c my nipple comes out in the shape of a lipstick or a wedge with a white line across the tip after she is done feeding.  The good and hopeful news is that it is bearable now (sometimes not even very noticeable), and if it never goes away, I don't think it will harm our nursing relationship (unlike in the early days, where it hurt so badly that I hated feeding her, and dreaded it so much - and when she was grumpy and hungry all the time b/c she could never get enough milk!), but I am still hoping that it will either gradually go away on its own, or that we'll be able to cure the pain for good.  We've tried some suck training exercises recommended by an LC, but it just seems to make her angry, and I don't feel like it is really doing anything - I certainly don't notice that it helps the pain when she nurses immediately afterward.  I guess I do want to say that even if the pain never goes away completely, it does seem that if it at least recedes enough, the nursing relationship can still be enjoyable - I feel that this is where we are right now.  It's possible that the pain has gradually improved, but I just can't tell b/c it's too hard to compare. 

 

For those of you struggling with yeast, I thought I might mention a few things - no idea if they are relevant to your situations, but just in case they might help...

I had bad yeast issues for years (unrelated to BF, since our daughter is our first child) - I took drugs and herbs for years and was on diets free of all natural and added sugars for a year, and while all of those things helped a little to temporarily beat back the yeast, for me there was an underlying issue that prevented any of it from permanently curing my issues.  I went for about 5 years with an undiagnosed case of mercury poisoning, and when I was finally diagnosed and treated for that, the yeast gradually went away (and now I don't have yeast issues much anymore, even with the hormones of pregnancy and BFing) - the treatment itself caused flare-ups, and my recovery wasn't a straight line, so it wasn't always clear that I was getting better, but a year later I was much, much better.  Mercury poisoning itself isn't really treatable while BFing or pregnant (and the most accurate tests - challenge tests using urine, for example - aren't safe during pregnancy or BFing b/c they can release heavy metals into your system if you have high levels), but for those of you with recurrent yeast issues - if I were in your shoes, I'd try to find a doctor who would test me for heavy metal poisoning after I was done BFing just to see if that could be an issue.  Or maybe there is some other underlying condition that could be making your system more prone to yeast infections?  I don't know that my experience is relevant to anyone else, but I found that for myself - the body's underlying tendency is to heal and recover, so if some treatment helped, but then the infection just came back, it seemed to me to indicate that there was an underlying problem making my body's default state to be the infection rather than for it's default state for it to be healthy, and that once that underlying issue was really gone and my body had time to heal on its own, yeast and other issues went away on their own without treatment.  Just my experience.  Maybe also if one could see an alternative practitioner who specializes in things like heavy metal poisoning and yeast issues, they might be able to do some kinds of effective treatments even while BFing.  Anyway, best of luck to everyone struggling with this stuff - I know it can be really nasty and painful. 

 

I hope everyone else on here finds solutions to their pain issues, or that they just improve gradually on their own!  It is good, though, to have some sympathetic company, when one is struggling with pain and difficulties, so I'm grateful for this thread...

 

 


DD born at 40w2d on 1/19/2011

EDD for number 2 on 2/28/2014

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#92 of 101 Old 06-20-2011, 06:50 AM
 
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Quote:
Originally Posted by Alenushka View Post

I had amazingly strong needle like pain  at letdown every time I nurse with my first child. Vasospasm



I have a cramp on the side of my right breast during letdown.  A cramp!  Can't I have something happen without pain?


Jamie, DW to Jeff, birth and postpartum doula and Hypnobabies instructor.
4 years and 5 IVF cycles in the making, Elliott was born at home in water on 2/2/11.
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#93 of 101 Old 07-22-2011, 08:32 AM
 
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I just wanted to post an update.

 

After being on Cymbalta and propanolol (twice a day) for about 3 weeks, I wasn't having any relief.  Called the nurse and she said to go up to three/day on the propanolol and to give the Cymbalta another week or two to take full effect.  In that two weeks, I DID have relief!  I noticed that I don't cringe when DS latches on!  And I can sleep while nursing pretty well!  The nurse called again and I told her I wasn't pain-free but doing MUCH better!  She said I could also try Delsym (cough medicine) twice a day and that might help some too.  She said it would be subtle but it helps with "wind-up pain," like coughing is also a "wind-up" type of reaction.  I just started that yesterday.  Anyway, my nipples just feel very sensitive now, but much better than before.  So, things are looking up!


Jamie, DW to Jeff, birth and postpartum doula and Hypnobabies instructor.
4 years and 5 IVF cycles in the making, Elliott was born at home in water on 2/2/11.
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#94 of 101 Old 07-27-2011, 04:40 PM
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gemasita, I was so glad to see your update!  I hope things continue to go well with the treatment - that is such good news. :)


DD born at 40w2d on 1/19/2011

EDD for number 2 on 2/28/2014

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#95 of 101 Old 07-20-2012, 11:50 PM
 
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Hi everyone,

 

I'm new here and found this thread (and this website) after doing a google search for nipple vasospasms and Raynauds.

 

I'm a first time mom and my daughter is one month old today. We've had a ton of BFing issues but have been working through them, However, I have extreme pain and sensitivity still and my LC said that it shouldn't still be happening at 3 or 4 weeks. I went in to see her on Monday and it sounds like I'm suffering from Vasospasms and Raynauds. It's so painful all the time, especially when I'm not nursing.  But it makes nursing so miserable. My goal is to nurse for 2+ years so I am miserable about how much pain I am in. I had an unmedicated home birth and so I feel like a wimp for being so miserable about this, but at least I knew labor would eventually end. Right now I have no end in sight as long as I keep nursing. It hurts to pump too. I think I might have a blocked duct tonight.

 

I'd love to give more background, but I know this thread is old, so I'm wondering if the original poster (Blake201) or anyone else suffering from this, is still around and could possibly give me any advice.

 

On a final note before I collapse into bed, I had acupuncture today, as recommended by the LC, and I'm now feeling terrible. Don't know if it's an adverse reaction. I feel cold and achy and my boobs/nipples feel exceptionally sore and its almost like flu symptoms.

 

I am beside myself and don't know what to do.

 

Help????

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#96 of 101 Old 07-21-2012, 04:28 AM
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Hi Mom2Cali, 

I'm so sorry to hear that you've had such trouble breastfeeding.  I had a lot of pain with BFing for the first three months - the only way I could continue was to use a nipple shield, which is typically not recommended since it can reduce the amount of milk the baby can get and can therefore lower your supply, but it was the only way I could keep going.  

 

I went to a bunch of lactation consultants and to a doctor who specializes in BFing, and none of them figured out the problem - it was the women on the boards here who finally helped me to solve the issue (you can see my original post here).  For me, the main problem was that my daughter had an undiagnosed posterior tongue tie, and we were able to go to a pediatric dentist to get it corrected when she was three months old.  I figured that out by posting my own post here under the BF difficulties forum, and describing in detail all of the issues and what we had already tried.  Maybe if you did that also, you might get some helpful advice from women here who have had similar problems?  

 

Here is what I can share from my experience:

 

I, too, had vasospasms.  In my case, they were the result of the trauma to the nipple caused by my daughters incorrect latch.  The main advise for the vasospasms themselves that worked for me was to keep the nipples warm all the time.  I had been trying to air them out, since that is the advice given when there is the possibility of infection or yeast, etc, but for me that was the worst possible thing.  I had Bamboobies nursing pads, which are a pretty thick natural organic washable nursing pad, and I just had those in my bra at all times (even in hot weather), and I always slept with a shirt that covered my nipples well enough to keep them warm (with buttons, for easy nursing access), and I always put my breast immediately back in the bra the second she was done with it (even if that meant hauling it back out again in a few minutes when she wanted to go back and forth).  The BF doctor also recommending trying those handwarmers (either disposable, or the kind that you can reuse) in the bra behind the breast pad (although I assume you'd need to be careful that they don't get too hot - ouch!), although I never tried this myself.  When the nipple was having a spasm that I wanted to stop right away, I found that squeezing it (which seems counter-intuitive, when it hurts), to force the blood flow back into it, helped to stop the spasm in that moment.  I did try a few different medications that were supposed to help, but it didn't really help that much, and the medication gave me headaches, so I stopped trying. I think she also recommended at least 50mg of each of the B vitamins, but I was already taking them and so this wasn't relevant for me.  

 

For me, there were fundamentally two relevant things it would have been good to know about the vasospasms:  in my case, they weren't going to improve until I fixed the underlying cause, which was the trauma caused by the incorrect latch caused by (in my case) an untreated posterior tongue tie.  I don't know if you have some other underlying cause that could be corrected or not, but if you can get some suggestions from other mamas about what possible causes could be, that might be worth investigating.  Secondly, in my case, the spasms never completely went away, but they are completely manageable now and I don't even think about them, and I am still BFing my 18m old daughter at least 3-4 times per day.  I think in my case, the tongue tie correction fixed some of her latching issues, but not all (maybe she has a high palate or some other structural issue that makes her latch more problematic?), and so I still use the thick nursing pads and make sure that my nipples are always warm.  As long as I avoid marathon nursing sessions, or awkward nursing positions that make her more likely to latch poorly, and I keep my nipples warm, I usually don't really have any noticeable pain.  It is sometimes a little bit uncomfortable, especially during my luteal phase (between ovulation and my period), but its almost never enough of an issue that I actually think about it.  

 

In terms of the blocked ducts, I had that several times, too.  Here's what the BF doctor recommended for me:  I was to take ibuprofen (for anti-inflammatory properties), and then about a half an hour later (when the Advil has had time to kick in) I should get into a hot shower, focusing the heat onto the breast with the blocked duct, and massage it, I think going from the outside of the breast toward the nipple.  After doing that I was to immediately BF or pump, and then immediately apply cold to the breast (I tried to avoid cold on the nipple directly b/c of vasospasm issues).  Usually doing this once was enough to clear things for me, but I think once or twice I had to repeat it.  I kept taking the ibuprofen for about a day to keep the inflammation down while it healed, to help prevent it from immediately coming back.  The doctor said not to take the ibuprofen for more than 24 hours, since it could mask a fever from mastitis, which can develop in a blocked duct if is isn't cleared quickly.  

 

I think I tried acupuncture for my pain also, and while I've had success with it for other things, it didn't help me with this issue, probably because I needed to fix the nipple trauma first.  I have, however, had acupuncture treatments for other things, and have sometimes had the kind of reaction that you describe afterwards.  I think the main thing I was told was to rest and drink a lot of water immediately afterward, and that the symptoms should subside by the next day or so.  I didn't typically have this reaction, but it did happen sometimes.  I think some people believe that it is a sign that the acupuncture released some areas that were real problems, but you probably need to decide for yourself if this feels like a temporary worsening of symptoms resulting from a release of some underlying problems, or if it just feels like it is making you worse.  I've dealt with several difficult health issues in the past (all of which eventually got resolved, thankfully), and I found that for me, sometimes a short-term worsening of symptoms was a good sign, and sometimes a worsening of symptoms meant that I was doing something that was just making myself worse.  This is a tricky judgement call, but I would definitely say to trust your own instincts.  

 

I totally know what you mean when comparing the BF pain to childbirth - I had an unmedicated birth center birth, and while I found childbirth pain to be very unpleasant (and definitely thought at the time that it was bad enough I wasn't sure I ever wanted to have a baby again, even though we plan to have another child), I found BF pain to be much worse.  I said something like that to another nursing mom at one of the BF clinics I went to, and she looked at me like I was from Mars.  A bunch of people, including other moms and doctors, dismissed my pain as a normal part of the beginning of BFing, but I don't think they really appreciated the severity of it.  I definitely think that if there is something really wrong, the pain of BFing can be really excruciating, and that other people often don't really realize this if they haven't been through it.  

 

I really hope you find a solution to your BF pain, and as soon as possible!  Your particular issue is probably unlikely to be the same as what I had, but I hope that some of my experiences are relevant and helpful for you.  Above all, I would say not to give up, and to keep talking to people on these boards and/or seeing other doctors and LCs until you find someone who may be able to explain and treat what is going on.  I really want to wish you the best of luck, and I'd love to hear updates, whether things are improving or not.  I'll keep my fingers crossed that you find a solution soon!


DD born at 40w2d on 1/19/2011

EDD for number 2 on 2/28/2014

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#97 of 101 Old 07-21-2012, 11:13 AM
 
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I have also posted on this thread before....had horrible pain fort 6 months with my first ..nursed him over 3 yrs and was never entirely pain free, I did not have pain with my second but my milk dried up, with my 3rd I once again had horrible pain...even worse than the first...she also lost weight fort a month aster birth which caused me to investigate more. She had a posterior tongue tie...I have spent a ton of time now learning about tongue tie and know that my other two kids had them as well...i now know why I was in pain for so long! So I had my daughter's tongue tier revised along with craniosacral therapy and they pain is almost gone...we can actually enjoy breastfeeding! I urge any mamas with unexplained passion to look into the possibility of tongue tie, including posterior tongue tie.

That is the super quick overview of it all...if anyone has questions please ask. I hate watching mamas suffer...especially more knowing on many cases the pain can bee resolved!
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#98 of 101 Old 07-21-2012, 11:45 AM
 
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I'm just scrolling through quickly while phone... Has anyone suggested craniosacral therapy? It's an incredibly non-invasive procedure (incredibly light pressure on various points of the body) that we had done at a local naturopathic practice by a CST. I noticed a complete change for the better within a day. Prior to that (we had it done at five weeks old), despite a BCLC, nurse, midwife, and several moms, as well as Dr Newman's clinic via an online consult, telling me that her latch was perfect and despite an ENT ruling out tongue tie (either anterior or posterior), I had horrible pain with each latch and with each suck. Blanched nipples, pain even when she wasn't nursing, painful let down, I would literally gasp and cry tears when she would latch on... I had expected discomfort at first and maybe even a little pain but when it didn't get any better and there was no evidence of yeast, a mama on another board suggested a CST. I had never heard of it and was skeptical but looked into it.

Not done writing but have to run and rescue the aforementioned baby... will check back.

Peggy: full-time shift-working mama to Kiddo (Nov|04) and Babygirl (May|11). Fiancée to Babe. Step-mom to Tween, my bonus daughter (Sep|00). Currently TTC - http://www.fertilityfriend.com/home/3c1739

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#99 of 101 Old 07-22-2012, 04:50 AM
 
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Whoaaa,..I thought this was a simple issue of pain in BF,..Mine was also hurting when BF but only because my DD is biting my nipple. In your case, you were all so great to still nurse even with the pain you are feeling.joy.gif


Living is great but being a MOM is even better

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#100 of 101 Old 03-25-2014, 08:37 AM
 
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Hi Gemasita,

I have tried to send this as a personal message but the site will not let me PM anyone....  From what I read, I am in nearly the same situation as you were.  To make a (very, very) long story (relatively) short...  My son was born 12 weeks ago today.  When he was two weeks old, I started experiencing excruciating nipple pain.  I was given a nipple shield and used that for about a week with no relief.  My son was diagnosed with tongue and lip ties which were corrected by an ENT when he was 3 weeks old.  I continued to have the same pain even after his procedure.  At 4 weeks of age, I couldn't take it anymore and started exclusively pumping which I am still doing today.  I am not without pain though, pumping is still very painful even with the hospital grade pump I am currently renting.  I do have Raynauds phenomenon but have not responded to nefidipine, propranolol, or the recommended vitamin B/calcium/magnesium supplements.  I have also been treated extensively for yeast with no improvement, including 2 weeks of difulcan, gentian violet, no sugar diet, etc...  I am working with a breast pain specialist at UNC hospital (I noticed you are also from NC!) but besides the medication I don't know if she has much else to offer me.  I recently started nortriptyline which seemed to start helping after a few days, but has since quit improving the pain and I am now pretty much back where I started.  I have resigned to the idea that I may not be able to feed my son at the breast and may have to be an exclusive pumper, but I would like to get to the point where I can pump and otherwise get through the day without pain.  The pain I am experiencing feels like nerve pain, such as a toothache or sunburn to my nipples that hurts the most when I am pumping or cold.  I also experience a very strong discomfort if something brushes up against my nipples and keep them well padded with layers of clothing and breast pads in my bra, day and night.  Since you story seems so similar to mine, would you mind sharing how you are now doing, and if you ever got rid of the pain?  Any info you have would sure be appreciated.  Thanks  :)

 

Kendra B.

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#101 of 101 Old 04-17-2014, 04:50 PM
 
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Hi! I had excruciating pain and then a friend of a friend suggested Silverette silver cups!!! They changed my breastfeeding experience and i am still BF my 1 year old!
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