Untreatable breastfeeding pain, but no plans to stop nursing--anyone else?

[blake201]

Would love some support as I'm feeling pretty sad/let down/exhausted/disappointed. Anyone else in the same boat? I love nursing and my baby is thriving... but I wish there were some end in sight to my pain issues.

After five months of treatment after treatment (some of them quite expensive!) and protocol after protocol (many time-consuming and complicated)... the specialist breastfeeding doctor I've been seeing for the past five months has thrown up her hands and declared my breastfeeding pain untreatable. She said she has never seen anything like this in her work, that it's a very rare case. (Before her I saw several lactation consultants and my midwife and I've also seen a rheumatologist to eliminate possible inflammatory issues).

I have what looks like thrush (though a culture showed it was a much rarer and more resistant fungal infection) accompanied by frequent painful vasospasms of the nipple (and spasms in my breasts both during and between nursing or pumping sessions). My nipples are bright pink and they change color during the spasms.

Baby and I have been through every thrush and anti-fungal treatment and protocol under the sun, from mild to aggressive--oral and topical medications and all the associated sterilizing and other protocols and Dr. Jack's protocols and other recommendations--and nothing has made even the slightest improvement. I've also been on several treatments for vasospasm, including nifedipine and prednesone--nothing. Tried fluconozole, clotrimazole, itraconazole, and others... The pain varies in intensity (it's worst during pumping sessions) but sometimes I have to grit my teeth and sometimes I cry.

I thought it was bad seven weeks in when I was still having issues--little did I know I'd have no improvement 5 months later!

I plan to nurse the baby for at least 2 years total, and I was hoping I might get to experience pain-free nursing someday, but it looks like I'm out of luck. I am relieved to not go through any more treatments, though--would have been worth it if they helped, but they were all useless and just got my hopes up.

Oh well. I'm trying to look on the bright side. My baby is thriving--she's healthy and growing great and in the 90th percentile. And formula is not an option for me for so many reasons... I LOVE nursing her except for the pain--love the cuddles, love the way she looks at me and how happy it makes her. She barely takes bottles at all, even with expressed milk. And she's dairy and soy allergic (even the smallest amount of those items in my diet gave her intestinal bleeding). 

Yeah, so... anyone else? I know it sounds crazy but I still love breastfeeding, even after all this.

[Bebe's Mom]

No advice, but I couldn't read this without giving you my sympathy, that is terrible!! I really hope that you find something to relieve your symptoms and experience a pain free nursing experience. Good luck.

[jessica_s]

I have not had your experience personally (but go you!!) but I know a mom who had similar circumstances in that there was an anatomy issue that couldn't be "fixed". Very painful for her, she said she just eventually got used to it (around 9 months- a year) but it was never really pain free, she went on to nurse a second child which is just as impressive as nursing the first for 2+ years. The second time around she did get a better deal as the anatomy issue was with the baby not her! She's always maintained that she'd do it again, but it was really really tough. Hugs to you and I'm glad to hear that you have enjoyment despite it all. 

[Buzzer Beater]

Blake201, I've not had one pain free day of breastfeeding in over six months. My babe has a very bad latch and we've not been able to change it at several LCs and the OT. She will not open her mouth up, and her top lip is curled under every.single.time she latches. Sometimes when she nurses it feel like I have been kicked in the crotch. When we try to fix her latch she flips out and refuses to nurse, it takes forever to calm her. We tried oral exercises for her as well and no improvement... anyway, I know how you feel. Nobody has been able to help, everybody has suggestions... we just keep plugging away, tho my dd is in about the 15th percentile weight wise. I don't let it worry me too much. I've got no plans to stop nursing, and haven't even introduced solids yet (she's got a serious tongue thrust). Hang in there mama, I feel ya!

[cyclamen]

I was also having "unsolvable" breastfeeding pain four months in, post 2 TT revisions, craniosacral therapy, and a host of other stuff I can't remember now, newmans ointment, nipple shields, probiotics, etc.  I remember the kicked in the crotch feeling.  I used to cry and pinch my hand while DD nursed.  I was told by an LC that I might just have to accept it.  She told me that she nursed her youngest for 2 yrs and it was never entirely pain free.  When I heard that I felt depressed and a little angry.

Anyhow, it did gradually get less and less bad.  We were treated for yeast, which I'm still not sure we had - my nips were pink because her latch was bad-, and I did the protocol to reduce my oversupply (which no one had noticed, and which was exacerbated by my pumping for her TT), which helped her latch even more.  Then the vasospasms (a secondary rx) eventually went away until, around 7 or 8 months, bfing was just mildly weird feeling.  To this day (17mo) I find it difficult to let DD nurse as long as she wants. We did a lot of "nurse a few minutes, pop off."  She did not have enough solids to displace bfing until ~1 yr.  If she comfort suckles, I have to stop her.  It gives me the creepie crawlies and is not painful but is very very uncomfortable.   She did get very skinny around 1 yr but I've been doing a lot of bone broths for her and meats, fats, and veggies which seems to help alot.

Do you take probiotics or coconut kefir?  It's a long shot, but if you've tried all of the medications, maybe the beneficial bacterias and yeasts in kefir could help fight off the resistant yeast.  Supposedly it's good even for resistant candida infections. edit: I suspect that the thrush medicine we took (nystatin and the 1 big pill? - twice, plus gentian violet) has played a role in my daughter's problem with digesting milk or gluten.  I read afterwards that we also have symbiotic yeasts that help our digestion, but at the tme it seemed to be the only right thing to do.  Anyhow I've seen an improvement with more fermented foods/kefir and broths.

I think there is another mama on here who nursed a babe with a tongue tie long term.

[cyclamen]

I also wanted to add that I get the feeling of wanting to stick with breastfeeding even though it's painful.  I used to cry thinking about being in pain for the next year and a half.  (I also wanted to get to 2, in six month increments.  I've since changed my mind but it looks like DD is determined..  LOL...)  Then I cried thinking about having to do something else - anything else, all those perfectly equivocal options like pumping (she couldn't really drink from a bottle well enough to rely on it... we tried tons, including the $$$ special needs feeder - I found out much later that probably the only reason she didn't lose a ton of weight was because my oversupply was shooting the milk right down her throat), begging another nursing friend to nurse her sometimes (who'd want to?  and what if we did have thrush and spread it?), formula (bottle problem).  Etc.

Many people told me it would be ok if I wanted to stop bfing because of pain, and I believe it would have been okay, but something... hormones, maybe? .... made it feel like it was absolutely not an option for us.  It was like a compulsion.  I even felt a little nuts.  Like, a sensible, rational person would find a way to do something else.  Anything else.  Sometimes I wanted to quit, but I just - couldn't.  I never would have guessed that breastfeeding would cause such huge feelings in me.  I was just planning to do it because it was free.

[blake201]

Originally Posted by Buzzer Beater 

 I know how you feel. Nobody has been able to help, everybody has suggestions... we just keep plugging away...

Yes Buzzer Beater, that's the feeling! I totally sympathize... we haven't introduced solids yet either (I'm nervous about it due to her dairy and soy issues, but we'll start carefully in a month or so) and we just keep plugging. One the one hand I'm relieved to not have to deal with any more treatments (I felt like I had to TRY everything JUST IN CASE it worked!)... but on the other going to all those LCs and doctors and trying all those treatments was NOT cheap, and a lot of them had side effects and upset my stomach and made my baby girl really cranky. 
 

[blake201]

Thanks Cyclamen! We have indeed tried probiotics... and we've been dealing with oversupply as well, though that has been improving a lot (I pump only twice at work now, since I can produce PLENTY of milk for her to drink while I'm away in that time, since she barely takes bottles at all) without seeming to mitigate the pain issues. Oversupply does make it worse, though, because when the milk shoots/sprays, she clamps down and I have to unlatch her due to the excruciating pain and spray milk into a burp cloth until the flow slows enough so she doesn't clamp. 

And I have the same serious emotional/hormonal attachment to breastfeeding... when someone even begins to suggest I might want to stop or that it would be ok to stop due to my pain issues I totally freak out and have a meltdown. I can't imagine NOT nursing her!

[ShwarmaQueen]

I commisserate your feelings. With all of our issues, nursing DS isn't and hasn't ever been enjoyable for me either. He only sucks on the end of my nipple due to his super high palate and so I am in pain at times or otherwise uncomfortable. It's been a long road but at a year now, I'm seriously pushing solids to give myself some relief. He still loves to nurse, and I'm happy that he's thriving, but it has been a long, horrible experience all in all. 

The things we do for our kids! 

[Buzzer Beater]

Originally Posted by blake201 

And I have the same serious emotional/hormonal attachment to breastfeeding... when someone even begins to suggest I might want to stop or that it would be ok to stop due to my pain issues I totally freak out and have a meltdown. I can't imagine NOT nursing her!

Unfortunately it's always my mother who is suggesting I switch to formula... you know, for my sake.  I'd rather have her pep talk to keep up the good work, but she didn't bf any of her kids... she has suggested I supplement from the beginning.

ShwarmaQueen, how did you find out your DS has a high palate? Nobody suggested that to me, but they did give dd exercises to develop her oral motor skills... no change.

Originally Posted by ShwarmaQueen 

I commisserate your feelings. With all of our issues, nursing DS isn't and hasn't ever been enjoyable for me either. He only sucks on the end of my nipple due to his super high palate and so I am in pain at times or otherwise uncomfortable.

[ShwarmaQueen]

Buzzer beater (love that name lol) , a breastfeeding educator and an LC both told me. Instead of having a flat surface on the roof of his mouth for the breast to compress against on top, the top is super high, like a dome, therefore he absolutely refused to keep the full breast in his mouth. We've tried every trick in the book, but he only way he will (and maybe is able to) nurse is if the nipple is all the way at the front of his mouth. Not fun.

If you have a 'normal' mouth to compare it to, you can see a difference with DS. 

[aphel]

Hi ladies -

I appear to be dealing with many of the same issues, and am glad I've found some people in similar situations . . . .

DD is 4 mos. and I have never nursed her without some amount of pain. She has an awful latch and little I do makes it better, she is constantly pushing my nipple to the front of her mouth. We've seen three different LCs (not including the hospital LC where I delivered, who handed me a bunch of formula samples and basically shrugged her shoulders) and have recently started attending LLL meetings. Sometimes I am able to get her to latch properly, and it is blissfully less painful, but she almost always reverts back to her preferred latch by the end of the session. I can't even imagine what it's going to be like when she gets teeth.

We've also been dealing with a particularly vicious case of thrush for at least three months now. I've been on Diflucan since the beginning, and DD has done two separate rounds of nystatin. We've also done two rounds of gentian violet, probiotics, vinegar washes, odorless garlic (for me), dietary changes, newman's . . . .Sometimes it gets better, and then comes crashing down again and the pain is so searing when she nurses I cry. I can barely stand to even have fabric rubbing against my nipples when they're bad, much less DD's terrible latch. The cracks I developed in her first two weeks of life took over two months to heal, but finally did, thankfully. But the trauma of cracks/thrush/bad latch has caused vasospasm to develop . . . .so badly that the tips of my nipples turn this awful sickly yellow color.

I've resigned myself, like you've all said, to just nurse through the pain. I refuse to even consider giving up nursing, but it makes me so terribly sad, I really believe the pain won't ever get better. This isn't supposed to hurt.

a side note to shwarma queen -  your description of your LO's palette rang a bell . . . . who helped you identify this? Is there anything that can be done? I think we may have a similar issue

[ShwarmaQueen]

Aphel, A breastfeeding educator and LC both told me. I would specifically ask about it because anotomical abnormalities (palate, TT, oral motor weakness) are not always the first thing people think of to check for. Instead they usually try to fix it through positioning, etc. You might be able to do a google search for pics and look the next time she cries. It's pretty obvious w/ DS. They checked it automatically when they found the posterior TT, since they usually happen together. 

[blake201]

aphel, I hear you! the vasospasms are awful--my breastfeeding doctor explained they are the results of the fungal infection that has resisted all treatment. I get painful spasms deep in the breasts and sometimes just in the nipple and areola and I hate it... the nipple turns white in the middle, then the nipple and areola turn white, then they turn a scary dark purple, and other colors. I just had a spasm just now when I was walking around at my work and almost cried out. 

AND she's teething, AND going through a growth spurt... last night she wanted to nurse from 9 pm to midnight without stopping, the pain was crazy and she even took a few chomps. but she was so cute and cuddly in my arms, it was like I was crying but happy at the same time. sigh... little beautiful baby! (or not so little--she's almost 18 pounds, I think!)

[firewife]

Wow!  After 5 months I have found persons with simuliar problems.  I'll post my story tomorrow.  NAKing in bed.

[aphel]

Originally Posted by blake201 

she was so cute and cuddly in my arms, it was like I was crying but happy at the same time. sigh... little beautiful baby!

Yes, this! I'm constantly watching her as I nurse, reminding myself how happy and safe and content nursing makes her, it makes it easier to get through the pain. At least we are giving our little one's this level of contentment, even if it feels terrible and painful for us, kwim? Like you, I do really still love nursing, despite all this.

And as for the vasospasm, DH refers to them as "dead man's nip syndrome", because they look kind of, you know, dead for a minute. . . . (that smiley is called eek, not sure if it looks it, but I think 'eek' sums it up nicely!)

Quote:

Originally Posted by ShwarmaQueen 

Aphel, A breastfeeding educator and LC both told me. I would specifically ask about it because anotomical abnormalities (palate, TT, oral motor weakness) are not always the first thing people think of to check for. Instead they usually try to fix it through positioning, etc. You might be able to do a google search for pics and look the next time she cries. It's pretty obvious w/ DS. They checked it automatically when they found the posterior TT, since they usually happen together. 

Thanks, Shwarma (and p.s., awesome name!) Going to LLL tomorrow, mayhaps the leader can check for this . . . . If not, I've been thinking about seeing an LC again, we haven't seen anyone since DD was much younger. I'm hoping, maybe foolishly, that this one LC I know of might be able to help.

Anyone else have any experience seeing an LC when their babe was older? I kind of thought that LCs usually only deal with very new babies, but maybe I'm wrong about this?

And lastly, I wanted to share this - A very dear friend, when I told her my bf'ing woes, and how I was still in so much pain, told me that I was a warrior for putting up with this. And we are, all of us. Lactating warriors!
 

[firewife]

I feel the same as you do.  I LOVE nursing, but i can't stand the pain, but I don't plan on ending breastfeeding anytime soon.  Ian is 5 months old and at 2 months we found out he is tounge tied.  Went to see an ENT, (who loves to clip tongues) but was unable to clip due to his short and fat tongue.  Dr.  said he only sees one every five years or so.  So here we are several cases of yeast and one case of mastitis (caught really early).  He mainly nurses from the right breast, but will nurse some from the left.  I have a tubular left breast.  Funny thing is it doesn't hurt on the left side.  I've looked all over on line for someone with simular case to no avail! 

I've breastfed two other children, one for only a short time from my uneducatedness and one for 3 years!  I'd like to nurse Ian just as long.

[gradstudentmommy]

You can add me to the group! I have an incurable staph infection of my nipples and milk ducts. I had it four years ago when I was breastfeeding my daughter. I happen to live near a researcher who has been studying this for 17 years. She has about a 90% cure rate but I'm in the unlucky 10%. I've tried 5 antibiotics and while it's gotten slightly better, we haven't been able to cure it. And I also have super painful vasospasm that makes me crazy. I'm actually about to do a trial of Nifedimine to see if it helps since the vasospasm pain is worse than the pain from the infection. And on top of that, my LO seems to have suddenly changed his latch. I don't know what he's doing but it hurts!

I really don't want to quit breastfeeding but if my infection spirals out of control I'll have to. I talked to a woman who had my same infection who weaned and then relactated but the infection came back the minute her milk came back in.

I'm going to hang in here as long as I can though. It's nice to know I'm not alone!

[Buzzer Beater]

Originally Posted by blake201

AND she's teething, AND going through a growth spurt... last night she wanted to nurse from 9 pm to midnight without stopping, the pain was crazy and she even took a few chomps. but she was so cute and cuddly in my arms, it was like I was crying but happy at the same time. sigh... little beautiful baby! (or not so little--she's almost 18 pounds, I think!)

blake, I remember those evenings on the couch.... ouch! You have a lot going right now. That seems so early for teething, hopefully she will learn to keep them off your nipple.

 

Originally Posted by aphel 

Anyone else have any experience seeing an LC when their babe was older? I kind of thought that LCs usually only deal with very new babies, but maybe I'm wrong about this?

And lastly, I wanted to share this - A very dear friend, when I told her my bf'ing woes, and how I was still in so much pain, told me that I was a warrior for putting up with this. And we are, all of us. Lactating warriors!
 

aphel, I did see an LC when Georgia was about 4 months or so and we worked on changing her latch. Every time we touched her mouth or made her relatch she would have a fit and we got nowhere. We had some "exercises" to do with her... and we were advised to get her on a certain type of bottle to help her open her mouth up more. That was hell, she hated the bottle for a looooong time, but now it's wonderful for me that she takes one, my right breast especially needs a break some times. But this woman didn't even look in Georgia's mouth!

We're going to an OT next week. This visit actually stems from my ped having a cow about dd's tongue thrust and the fact that we're on zero solids. She may have some oral motor skills problems along with the bad latch- we're willing to at least do an evaluation, but it won't make me feed solids sooner. It would make sense tho that something funny is going on in that mouth.

[ShwarmaQueen]

We're going to an OT next week. This visit actually stems from my ped having a cow about dd's tongue thrust and the fact that we're on zero solids. She may have some oral motor skills problems along with the bad latch- we're willing to at least do an evaluation, but it won't make me feed solids sooner. It would make sense tho that something funny is going on in that mouth.

The over-sensitive tongue thrust is a HUGE red flag for TT (incl posterior). Since the tongue can't explore the baby's mouth inutero it takes much longer to desensitize the mouth. DS just started being able to put solids in his mouth without gaging/puking/crying- I'd say he's at least 6 months delayed (behind DD). 
 

Buzzerbeater, how old is your DD2? Can you give her rice rusks or biter biscuits yet? I was told to give these as soon as possible to avoid DS having oral aversions, that the longer you wait to introduce 'hard' things the quicker the tonguethrust/gag reflex will go away.