Wednesday, March 18, 2015

Encouraging Galactocele Update



I look around each day, wondering how time can go by so quickly.  The baby who was nursing during the time of experiencing an enlarged galactocele is now on the verge of turning 5-years-old.

Since the galactocele was basically a non-issue these last couple years, even though I could feel something there still, I hadn't given it much thought.  Becoming pregnant with our newest member of the family, I thought the galactocele was beginning to grow again. Looking back, I believe it was just naturally occurring breast tenderness; changes due to pregnancy and hormones.  This baby was born at the end of last summer and 6 months later is nursing great!  And...I can't feel anything in that area anymore!

I am truly thankful and feel immensely blessed. We had two miscarriages between our 5-year-old and our now 6-month-old. Knowing our wee babies are in the loving arms of our Lord and Saviour, Jesus Christ, has helped ease the pain of their passing into their eternal home. We know we will see them again! There were days of incredible sorrow but we look ahead to snuggling their cuddly selves.

There were days I questioned how I would nurse through the same galactocele issues with these last three pregnancies, but thanks be to God; no more galactocele!  I'm learning to let go of stressful situations before they develop.  God's Word and prayer have been constant reminders of God's faithfulness no matter what the situation.

Obviously, there is no guarantee for any woman that she won't develop a galactocele or have one develop again.  That brings me to preventative measures. Nothing listed here is obsessive in nature, rather based on knowledge of what has helped in the past and reading more about the importance of nutrition. Think of these as "simple solutions". Many I implemented while dealing with the original galactocele and have kept them up. Can I say for a fact that any one or multiples of these got rid of the large galactocele I had?  No.  However, I know that certain supplements did reduce the pain and swelling.

I'm sure there are many of these that you are trying/have tried already, but here is my list:

Supplements:
~ Wobenzym N - reduces inflammation (and more) - made noticeable reduction in swelling/pain; I still take this daily. My husband also takes this (and probiotics) due to years of hockey abuse his knees have taken; works great!
~ Garden of Life Primal Defense - probiotic/HSO's
~ Dr. Mercola Probiotic (usually take 1 of these with 1 of Primal Defense in morning)
~ Garden of Life Prenatal Vitamins - have been using for years.
~ Garden of Life Organic Prenatal Vitamins - haven't tried these yet but just switching to this new product this month to see how they compare. Amazon had a coupon. :)
~ Garden of Life Raw D3 5000IU - we live up north and I can only dream of more sunlight; lab draws have shown me deficient in vitamin D.
~ Green Pastures Fermented Cod Liver Oil/Butter Oil - for now, I've switched to their Skate Liver Oil due to a baby with dairy issues but our children continue to take this.
~ Radiant Life Dessicated Liver - for me and kids, although I love liver & onions so if grassfed liver is available I love to just eat it. Yum! :)
~ Iodine
(Amazon links are affiliate links only because they're products I use and recommend)
~ Pao D'Arco - used this as an anti-inflammatory. I would steep it as a loose-leaf tea once in awhile when I was really engorged.  It can also be purchased in capsule form. This helped quite a bit but I had to monitor my milk supply as too much will reduce milk. Think of it working like a decongestant.
~ Sunflower Lecithin (NOT soy-based lecithin) ~ reduces "stickiness" of milk. When I did have an aspiration, the milk was like a sticky mass of Elmer's white glue. Ick! I no longer take this, but did while dealing with the galactocele once I realized it could help in that area.
~ Phytolacca Decandra 30C - was taking 5 pellets per day while dealing with galactocele.

Activity/Clothing:
~ go bra-less as often as possible (My only option for this is while at home but some women are able to go modestly without anywhere)
~ when you do wear a bra, NO underwire
~ get as much natural sunlight as possible for optimal vitamin D
~ try not to sleep on your stomach
~ avoid tight-fitting swimsuit, bra, etc. - anything that isn't allowing your breasts to "breathe"/lymphatic system to drain
~ avoid stress (easier said than done at times...I get it)

Food:
~ do your best to remove (preferably eliminate) processed foods
~ lots of vegetables
~ avoid soy (acts like estrogen)
~ limit sugar and grains (which I haven't done so well with ever since Christmas...)
~ organic when possible/avoid chemical pesticides & herbicides
~ learn to make fermented/probiotic rich foods -- I am still learning but I'm here to tell you that making your own sauerkraut, milk kefir, buttermilk, and water kefir are very easy! I'll try to write a post about those. In the meantime, you can make a one-time purchase of the last three starter cultures from www.culturesforhealth.com.  The cultures multiply and/or are activated initially so that you can continue to use them indefinitely.  You could also get a starter culture for veggies there if interested. I've made sauerkraut with that and also with a starter of whey and salt.

More Common Sense:
~ nurse galactocele side first
~ don't assume draining will be a cure-all. For most, this only works when baby has weaned. Otherwise, duct is still plugged and will refill. I felt like a clinical experiment during this process. None of the doctors I saw had seen such a large galactocele...nor did they know what to do about it.
~ it was a struggle and often painful but I was able to continue nursing even when told that stopping might be the only resolution.
~ if you do switch to formula, don't lay a guilt-trip on yourself (just don't choose soy, please!)
~ massage/warm showers/warm compress
~ sleep (definitely easier said than done say I, the mother of a baby who still frequently wakes up at night!)

I'd love to hear your stories and thoughts in the comments section.  If you're dealing with a galacocele right now, be sure to read my older galactocele posts and the comments sections too.  There are many women looking for answers but there is seemingly little information available. Hopefully our stories can help each other out as we look for solutions. God bless!

~ Heather


**(4/24/20) For some reason, I’m unable to respond to comments now. I thought my replies were going through, but many spaces are blank... To the last posted comment by “Unknown”, here is the reply I wrote twice and am unable to post except here. I hope you see it. 😊
“ I just wrote a long reply and it was deleted after I selected publish....of course! How old is your baby? Most recommendations I’d have are listed in the blog post, although, I haven’t checked links to see if they work anymore.
I know this can be frustrating, discouraging and many questions just don’t get answered.
As far as knowing if your baby is getting enough milk, there are a few questions that can indicate how much he is getting... Is he content or fussy soon after nursing? Is he gaining weight? Is he nursing longer on one side? The design of breasts of produce milk is based on supply and demand. The more you breastfeed or the more baby suckles, the more milk your body will produce. You can nurse him more frequently to work up that supply/demand feature. Mother’s nutrition, water intake, and medications can play into reducing milk (or increasing). Be sure you’re drinking enough water and eating nutrient-dense foods. There are lactation-promoting herbal teas you could look into. If your son does end up supplementing with formula, it will be okay too. Making milk isn’t a “super power” (as some shirts I’ve seen say); it’s part of feeding and holding your child. Loving your children, comforting them, holding them, teaching them to know right from wrong, and praying for them is nurturing and nourishing to their bodies and souls. Praying you are able to continue to heal from the galactocele on one side while nursing your son on the other.”

25 comments:

  1. Hi Heather,

    Thank you so much for starting this blog and keeping it up to date. It is frustrating how little information is out there regarding galactoceles.

    I have one the size of a kiwi and it has become painful and red. I don't know if I should get it drained or not? I already suffer from low supply so I'm concerned about a wound or infection that makes it harder for me to pump and nurse. Although, maybe pumping is aggravating it?

    I can live with a huge lump in my breast if it allows me to still nurse but since it's so tender I'm wondering if draining it is a good idea at this point? I wish I could find a doctor who knows about the nylon probing like they do in Thailand.

    Please let me know what you suggest.

    Thank you!

    Katherine

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  2. I would say that if your breast is red and inflamed, you should have it drained to see about potential bacterial infection. Sent you an email.

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  3. Thanks for your update. I'm expecting my second baby in the coming weeks and concerned about recurrence. I'll try to remember to post any updates on here. With my first son (only 20 months old now), they found the galactocele around 5 or 6 months nursing. It was sort of the death knell to my nursing, which had already been very difficult (in terms of his weight gain, my supply, and latch issues that never completely resolved). I continued nursing until 8 months and then switched to formula. I would love to nurse at least as long and hopefully longer this time. My galactocele never got infected, was only tender (not terribly painful), but did seem to affect my supply on that side last time. I also never had it aspirated. I'm hoping not to deal with some of the more serious side effects others have experienced this time around. As a side note, I have fibrocystic breasts and a history of multiple biopsies in each breast. The area where the galactocele developed was in a breast where I had had three biopsies in the last year! (We were trying to get pregnant and the doctor convinced me that I really didn't want to be worried about these being potential malignancies while pregnant - so I went ahead and had the biopsies despite the high likelihood that these were also benign). I feel that the scar tissue from the multiple biopsies is likely the cause of the galactocele developing.

    Anyhow- I want to reiterate what everyone has said-thanking you for posting your last post and this update, as well as for encouraging comments with everyone's stories. It is a wonderful resource!

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  4. Hi Heather,

    I had a small lump on my right breast about a month ago along with flu like symptoms and a slight fever, so I saw a GP and took oral antibiotics. The lump changed in size and didn't went away. Two weeks after that I developed a bigger lump on the left side along with a high fever and soreness, likely due to nursing more frequently on the left. My gynae put me on IV antibiotics and the lumps went away, but two days ago, I discovered that the same small lump on the right is back. It feels like a knot, and would grow bigger between nursings. I saw a LC who tried to massage it out to no avail, and also tried all the plugged ducts remedies. The LC suspects that I actually have a galactocele and should visit a breast surgeon - any thoughts?

    Cynthia

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    1. Just seeing your reply now. How are things going and what did you decide to do?

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  5. Hi! Thanks for sharing your story! I had a galactocele while nursing my son (diagnosed with a mammogram). I got pregnant while nursing and then had a 5 month break between breastfeeding. The galactocele never went away. I'm wondering if j should get it drained? It does not bother me at all but I've had it for a good year and a half so not sure what to do.

    Also, was wondering if your galactocele ever effected your baby's stool? My son had bloody stools and I did a elimination diet which seemed to help but this was after months of trying to find s culprit. Now my daughter is 2 weeks old and she has mucusy stools. I'm wondering if my galactocele could have anything to do with this. Thanks in advance for any advice!!! :)

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    1. A late reply, but our baby's stool was never affected by the galactocele that I could tell. However, all of our children had allergic reactions to dairy. Blood and/or mucous in the stool can relate to allergies either in their diet or yours if you are breastfeeding. Hope you have found a solution since I'm replying in October.

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  6. Thank you for posting this! It's encouraging to know that with your second breastfeeding round it hasn't been an issue. I just had a galactocele drained yesterday and I felt it filling back up only a few hours afterward, which was so frustrating. I have been searching for ways to keep it from getting bigger and I found your posts and they are extremely helpful. I was frustrated yesterday because even with an amazing lactation consultant and a doctor helping me with it, I felt like they were guessing as to what to do while I was there! What they drained wasn't sticky and white, it was almost black and it scared me! They acted like they weren't sure whether it was normal or not, chalked it up to it being old blood that had been sitting there for several weeks, and decided not to send it in to a lab for testing. I wish I had read your posts yesterday before I went and I would have known that wasn't normal. Sigh. Anyway, I'm glad you have posted this info to help others and it's good to know that you were able to continue breastfeeding with it there because I would like to continue as long as I can. Thanks again!

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    1. A month later, how are you and baby doing? It's too bad the milk sample wasn't sent away to be tested just for your peace of mind. Each doctor, nurse or other health specialist I met with acted the same way: didn't know what to do and would debate a (non-)course of action in front of me. It sure wasn't reassuring, especially knowing that each appointment came with an expensive bill at the end!

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  7. Hi heather, may i ask how did you go about weaning? I have problems weaning as i suspect i also have a galactocele as my right has a chronic lump (4-5mths post bfing) and supply is soo slow and half of the left side. Everything i try to wean naturally, i get lumps/blocks and is stressing me out. Am considering taking dostinex. Thanks!

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  8. Most of my babies have been weaved a few months after turning 2-years-old. Do you want to keep nursing or what is your reasoning for stopping? Either way, there are solutions; just wondering. If you feel your supply is low, have you looked into taking Fenugreek? It's a supplemeant that I've used on different occasions and it did increase my supply. Also, you have to be drinking enough liquids and eating enough nutritious foods yourself for milk to "work". There are times I just get busy with life and can tell there is less milk readily available because I haven't eaten or drank enough during the day. A La Leche League consultant or breast feeding consultant at a local hospital would be able to give you suggestions for continuing or ending lactation. Possibly even a local midwife could assist you with breastfeeding issues. Since you asked about my weaning experience...just in case you still want to know. When I share this weaning solution, realize a 2-year-old is already nursing less and understands what my "solution" means. Bandaids. Seriously! My babies have love their nursing...still getting up at night to nurse at that age as well. So, when it's time to wean, it can mean some tears (possibly more from me?). During the day, I wear Bandaids over nipples and have a sippy cup on hand for my little one. At 2, they understand that a bandaid means boo-boo or "broken" and surpringly, they don't want to nurse with a bandaid facing them. It takes about 3 days to get them used to the idea and then they're fine. Sometimes I just need to rock them to sleep or walk around patting their backs to get them to sleep...some extra Mommy-comfort time.
    In the meantime, your milk isn't going to automatically dry up...even with Bandaids on! lol I either hand express or pump (just as much as you need to...you're trying to reduce slowly and don't want your body to keep trying to make more milk). You could drink Pau D'Arco tea to ease into it.
    I hope for the best as you decide what to do. Update if you'd like to. (Hug)

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    1. Just re-read my comment while perusing others' comments... I must apologize for so many typos! That's what happens when using an iPad to type I guess. :)

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  9. I am 26 weeks pregnant of my first child after over a couple of years trying. I believe I have a galactocele and will see my doctor in a few days. At first I thought it was a pimple or sebaceous cyst but my usual cream for that seemed not to have helped. I am just wondering if anyone has haf it in a first pregnancy and if it can affect later on breastfeeding. Thank you!

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  10. Hi! Not sure if anyone out there is still checking this but I’ve got a question. A little background first...

    When my daughter was 5-weeks old, I found out that I had a galactocele. It was really frustrating, to say the least. Not many people know about them and all doctors kept telling me it was a blocked duct at first. I kept trying to work it out but nothing changed. No one listened- I knew it wasn’t a blocked duct.

    Finally, someone listened and took me seriously and confirmed it was a galactocele. I had a ultrasound and the doctor offered to drain it but I declined at the time. A couple of days later, it became infected so I went back in to the doc, they drained it and put me on an antibiotic.

    The whole time I’ve had the cyst, I’ve pumped so that my milk doesn’t run dry. Unfortunately, due to the location of the cyst, most of my milk won’t come out anymore- it’s right under my nipple. And my daughter won’t latch because it’s too hard.

    The cyst has shrank and I am able to get a little more milk out, but still way way less than an ounce.

    The doctor told me that the cyst should go away with the antibiotic, but it didn’t. She recommended ultrasound therapy to break it up more and then it would go away. Has anyone heard of this before?

    I also talked with a lactation specialist who said that the galactocele will be there as long as I’m lactating and may come back with my next child.

    I’m torn on who to listen to- the doctor, or lactation specialist, because they are giving me different answers.

    Any advice?!

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    1. Ultrasound may help since it's so close to the milk "exit"--if that could have helped break up the galactocele I had, I would have tried it. Let us know what you decude to do; always looking for options that would work for mommas!

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    2. Since you've taken antibiotics, be sure to get on some good probiotics. 😊

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  11. Hello! Sorry if this comment posts twice. How long did it take for your galactocele to completely disappear after your 2011 baby? I have been continually pregnant/nursing for 7 years, so I don’t think mine has ever had a chance to disappear. It worries me that it never disappears, but it makes sense that it wouldn’t, given that I’ve haven’t had a non-pregnant/lactating body since it formed. I would love to know your thoughts. Thank you!

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    1. I'd have to go back over dates/writings to remember more exactly. However, I had it for about 4 years. There was a 2-year non-lactating period before another baby. By the time the next baby was born, it was gone and didn't recur.

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  12. Hi! I am wondering the same thing. I’ve had a galactocele for around 4 years. I had two kids within that time and nursed my last one until a few months ago. I recently found out I’m pregnant. Not sure if I should have it drained or wait longer. It freaks me out that I’ve had this lump for so long. Sorry to add to your post! I don’t know anyone who has had this issue! Nice to know I’m not alone!

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    1. Mine completely dissolved/reabsorbed(?) sometime around the 4-year mark. There had been 2 years of not nursing during that time. I was thankful to find out that with the next baby that it wasn't an issue at all.

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  13. Hi Heather, I have been diagnosed with a galactocele on my right breast it's been there since week 1 or 2 of my son being born. It has stayed relatively the same size and has only flared up when it first appeared in April 2017 and recently in June 2018. I am still nursing my son, but over the lump and tenderness associated with the galactocele especially since it's near my aerola and latching can be painful if its inflamed. I am starting to wean on the galactocele and up production on the other side to make up for the loss of the galactocele side per the guidance of my lactation consultant. I would like to nurse my son until he is 2-2.5 years old and wean him before getting pregnant. I decided to start weaning on the galactocele side because I am past nursing the 1 year mark but I also want to give my body ample timing to reabsorb the galactocele before the pregnancy hormones kick in and breast tissue stars preparing for breastfeeding again. Can you tell me how many months in took for your galactocele to be completely reabsorb after weaning? Thank you!

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  14. Hi Heather, I have been diagnosed with a galactocele on my right breast it's been there since week 1 or 2 of my son being born. It has stayed relatively the same size and has only flared up when it first appeared in April 2017 and recently in June 2018. I am still nursing my son, but over the lump and tenderness associated with the galactocele especially since it's near my aerola and latching can be painful if its inflamed. I am starting to wean on the galactocele and up production on the other side to make up for the loss of the galactocele side per the guidance of my lactation consultant. I would like to nurse my son until he is 2-2.5 years old and wean him before getting pregnant. I decided to start weaning on the galactocele side because I am past nursing the 1 year mark but I also want to give my body ample timing to reabsorb the galactocele before the pregnancy hormones kick in and breast tissue stars preparing for breastfeeding again. Can you tell me how many months in took for your galactocele to be completely reabsorb after weaning? Thank you!

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  15. I'm so glad that this blog is out There! I too have had a galactocele for over a year and feel like it will never go away. I've seen a midwife and an ob/gyn about it. It was diagnosed by mammogram and ultrasound when I was heavily lactating when my baby was about 3 months old. He's now almost 18 months old and was weaned about 3 weeks ago and it's still there. I tend to be on the paranoid side and think, "what if the radiologist read the report wrong?" I didn't have it drained but now I'm thinking it will never go away. I don't want to have surgery. It doesn't hurt. It just bothers me. Any advice?

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  16. Hi Heather! Any help would be appreciated. I have a very large galactacele that is obstructing my ability to nurse on that side. I'm struggling to know if my son is getting what he needs from just one side. I have prayed a lot and feel so sad over this. Any suggestions in walking through this would be appreciated. God Bless!

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