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cindy

I have PCOS and had twins a year ago. My breasts did not grow AT ALL during pregnancy, which is a red flag for supply problems after birth. I had good intentions, I took a breastfeeding class and bought the ginormous twins nursing pillow. I even brought my huge pillow to breastfeeding class so I could practice the football hold with two dolls! My rosy fantasy of being able to exclusively nurse my daughters was over about 5 days after giving birth, when they had lost too much weight, and the local breastfeeding clinic told me that they weren't getting enough milk from me, even though my milk had come in a couple days before. We started supplementing with formula that day (seriously, one of the worst days of my life), and I started pumping to see how much I was producing. I never got the 'rock hard' feeling like I was going to overflow with milk, at the most I only had a few hard spots. If I was lucky I would get an ounce and a half, total, after 20 minutes of pumping with a Medela Pump in Style. With twins, it took me three pumping sessions to build up enough milk for one feeding. I talked to 4 or 5 lactation consultants and visited the breastfeeding clinic (which was excellent) several times, but ultimately my meager supply started drying up on its own after only three weeks. I was not willing to try fenugreek or a prescription drug to increase supply, because after going through pregnancy taking 7 pills a day (met x3, baby aspirin, prenatal vitamin, extra iron, extra folic acid) I just did not want to put any more stuff in my body. Complicating all this was the fact that my daughters were a month early and had latching issues, plus I lost too much blood during the birth, and it took me a month to build up my hemoglobin again. I was really weak after their birth. At the time, I felt that I could not take care of them, take care of myself, AND nurse. I could only do two of those three things, and I chose to take care of them and myself.
So, despite my best efforts, my daughters were almost exclusively bottle-fed with formula. I had a lot of anger and loathing toward my body because of my inability to breastfeed, and it's just in the past couple of months that those feelings have eased. Now we're almost done with formula, and I am glad that I will never have to buy that stuff ever again. I am lucky that my daughters are both healthy and thriving at one year old.

Elizabeth

How funny. Internet coincidences never fail to surprise me, somehow, even when for the 30th time I call up Ask Moxie's site to comb the archives to find advice for some current parenting problem and find it conveniently addressed in the newest post.
Anyhoo, all that is to say, I just posted about this very subject not 10 minutes ago on a message board.
I have PCOS, got pregnant with the aid of Metformin, stayed on it until 13 weeks, and then got off at the urging of my then-OB.
I got Gestational Diabetes. Next time around I will be staying on Metformin in hopes of not having that happen again.
My daughter was healthy, not large at all, etc. etc., but dealing with all the medical paranoia about GD was a nightmare...anyway, moving on to Tits...
I did not have supply problems per se. We had some initial latch issues and other minor things that were pretty much resolved within the first month; I never had to supplement and she grew like a weed being exclusively breastfed (which she was for nearly a year, as she would only take miniscule and occasional bites of solids until near her first birthday). BUT.
The BUT is that I have extremely small "storage capacity" breasts. It is my personal belief that my breasts didn't develop normally when I went through puberty. They were almost nonexistent until my 20's and are still very small for my body. So perhaps I don't have as much glandular tissue as most women and that's why my daughter needed to breastfeed amazingly often for, um, WAY longer than this is supposed to happen. Even at 8 months old she NEVER went longer than 2 hours, she COULDN'T. Next time around, again, I'll be taking Metformin in the hope that it will ameliorate this issue - some people think that taking it throughout pregnancy may help the breasts to develop properly in PCOS'ers, and it is known to help increase supply once the baby has arrived (I read the article by the woman you mentioned on the LLL website).

wix

I'm not going to clog the comments with a copy-paste of my posts on the matter (Jo, feel free to clean up the messy links):

http://www.luckyhazel.com/wish/archives/000627.shtml
http://www.luckyhazel.com/wish/archives/001172.shtml

I am absolutely happy to talk/email/chat directly with anyone seeking information about PCOS breastfeeding issues.

I did have to supplement with the dreaded formula [there's sarcasm in that sentence, you just can't hear it from where you're sitting] until CX was a year old; we weaned at 19 mos.

wix

Oh, and Elizabeth and Cindy: You two probably have hypoplastic breasts, as I do, which is a frequent feature of PCOS, and is believed to be at the root of PCOS-related supply problems.

Here's an interview with Lisa Marasco on the subject of PCOS and breastfeeding, which explains what hypoplastic breasts are and how they make your life -so much better- [there's that sarcasm again!]

http://www.obgyn.net/displayarticle.asp?page=/pcos/articles/childers-chats

I should note that 'breast hypoplasia' is something of a catch-all term, and isn't precisely the term a clinician might use in a diagnosis. So, no eye-rolling from those of you who have more letters after your name than me.

JL

I could not produce enough for my child. She was aggressive because of it so I was miserable all the time.

I was pumping when I wasn't trying to breastfeed - and when I would pump - it would produce only an ounce or two - nothing more.

She lost so much weight in the beginning - from nine pounds to around six - that I finally had to start supplementing with formula and then go to formula altogether.

I didn't find out I had hypothyroidism and PCOS until about four or five years after she was born. So - go figure. If I ever have another child - I will definitely know at least what the problem is - instead of crying every single day out of pure frustration at my body.

Thanks for discussing this. So nice to know more info about my condition. I am amazed at how much PCOS has affected my body - stuff that I didn't even realize until just recently. The a-ha moments where you go - OH! That's why! Duh.

hydrogeek

Bless you ladies for being founts of knowledge. I'm almost 7 months pregnant after using metformin and a mini-stim cycle to get pregnant with PCOS, and I've been trying to find SOME...nay...ANY information about whether this will affect breastfeeding. I will be checking back in to read all the links. Thank you all SO MUCH.

Tine

I don't know if my story is helpful (quite possibly not), but it does seem related, so I'll share it....

My infertility was/is unexplained. Though I specifically asked about PCOS (because I had some of the symptoms), I never got that diagnosis or any other.

Fast-forward to my pregnancies (#1 w/ ART, #2 an unassisted miracle)....

My teensy-weensy breasts didn't develop AT ALL during PG#1, which concerned me. I asked my midwives about it, and they told me not to worry, so I didn't. They were right (or maybe just lucky); when kid #1 was born the milk flowed like crazy.

PG#2 and kid#2 went exactly the same. No breast changes whatsoever, but no breastfeeding problems either.

Andrea

Yes, please, speak up! I was diagnosed with PCOS last spring, and I've pretty much felt isolated since. All the women in my family are baby machines, so I get a lot of "what's wrong with HER" looks, because of my lack of children. Please, ladies, tell me stories that make me feel normal. Hair growth, in particular, is a sore spot.

Oh, and I've been cursed with 24 day long periods. I used to have only 7 or so periods a year, and now I get to go for nearly a month straight. I think my body is making up for those years of sparse periods.

And, I can't seem to get pregnant.

And, all my friends and cousins are.

And, I'm pretty alone.

SarcastiCarrie

I have PCOS (apparently without insulin resistance though, if that's even possible). I beat infertility. My breasts developed normally in puberty and grew two cup sizes in the first half of pregnancy.

I made enough milk, but it took longer than normal for it to "come in". It took about a 5 days before any real milk was flowing, and then only small amounts. But, I did not have to supplement with formula because the weight loss slowed down in the baby and eventually stopped (total loss - about 10% of birth weight). The nurses at the hospital were horrible and not helpful. But, they did make me pump after every feeding, and I hope all that extra stimulation helped bring the supply in even sooner. Ultimately, I was able to nurse (and work full-time) for over 11 months.

My always scanty periods have still not returned 16-months after childbirth (and yes, sometimes they are 3-weeks long, and you can take progesterone - Provera - to stop the long period (same drug will induce a period if it has been several months since you had one too).

Elizabeth

Andrea, you should really check out www.soulcysters.net. Loads of good info on PCOS to be found there, and a supportive community. There are tons of us out there (unfortunately), so you dont have to feel alone!

(no, I didnt forget the apostrophes - my computer is suddenly not letting me type them - how aggravating!)

Wix, I actually dont have hypoplastic breasts, just small ones. They are "normally" shaped and spaced. That is probably why I was able to maintain a full supply even if it took near-constant breastfeeding to achieve it. Theres a website out there (wish I could remember the URL) that shows pictures of hypoplastic breasts in case anyone is wondering if they have them - try Googling.

tessence

Jo -- Your bookstore experience reminds me of something that recently happened to me. I mentioned that I was seeing a midwife for my second pregnancy, and the young woman I was talking about said, with alarm, "Is she CERTIFIED?" I was like, uh, yeah, of course. Because, see, she's heard all these HORROR STORIES, she said.

nate

Hey Jo, nothing to relate on PCOS, but am belatedly answering your "how long did it take" for your monthly friend to return question...

Mine was almost exactly 15 months after birth--3 months after I stopped pumping at work (still nursing at home, though). I wish it'd stayed away--I had TWO! FULL! YEARS! of no periods! Ahh, it was a heady time...

katie

Ok, so little tears in my eye right now reading all this, because to me, these stories sound NORMAL. That's what happened to me, I'm SO GLAD others have dealt with the same.

I *technically* don't have PCOS, but I have every symptom of it. I've pretty much never had a regular period, and all we know is I ovulated once, since I miraculously got pregnant. I didn't really get breasts till after college when I put on weight (that I couldn't seem to lose. Oh wait! Hypothyroid! Oh! And hypoglycemia with a touch of insulin resistance! Fun!). They never grew during my pregnancy, and I so wanted those glowing orbs of lusious motherhood to balance out the gigantic stomach. Instead the stomach just looked huger b/c the boobs were so teeny up there. Then, no supply. Never felt "let down," Hardly ever felt "full", and after breastfeeding my daughter for about 10 hours/day for the first 6 weeks of her life and discovereing at that checkup that she was only at her birthweight? Supplementing started that day. Started pumping, too, and it took 3 20min sessions to make a whopping 5 ounces. Meanwhile, a coworker is pumping 8 ounces at a time and running out of storage containers.

My daughter is healthy and happy and positively plump right now, and we still nurse in the AM and PM for comfort and bonding. I wish I could smack a few people who ask why I even bothered still breastfeeding, but it's too special, and something important to me that I wish I could have done more of, so I'm doing as much as I can to make up for it.

jennyg

I have PCOS without the large number of cysts. I'm on met and ovulated (and conceived easily, praise the gods) on it. I was told by my (now, I know, idiot) midwife to go off the met halfway through pregnancy, and also to REDUCE my thyroid medication (I'm also slightly hypothyroid, which is also common for PCOS gals). Both bad ideas.

I have terrible supply issues. And very large breasts. That did grow two cup sizes during pregnancy.

I never became engorged, I have never once leaked.

I had a c-sect after she was stuck in my pubic bone, face up (I also had severe pubic symphasis dysfunction during my pregnancy, which is possibly linked to PCOS and also to needing a c-section). She was only 7 pounds, 8oz, and I did not have GD. The baby just kept losing weight, terrible jaundice, etc. We resisted formula for a day longer than the doctor wanted, and then had to break down. This was, honestly, the worst time in my life, in the incredibly shitty hospital here, not being in a private room, trying to keep my starving baby awake enough to nurse on my dry breasts. Syringe fed her for a month along with constant nursing (with terrible latch problems) and pumping every. damn. time. I woke up every three hours to pump throughout the night (like I was sleeping anyway, not.)

Now, she's 5 months old. Gets about 2/3 of her milk from me, 1/3 formula. This is a huge improvement. Improvements were due to DOMPERIDONE, 120 mg/day (I buy from an internet pharmacy), increasing my thyroid medication (it should have been increased, not decreased, during pg, even with normal TSH tests, I found), and back on the met.

As her latch improved I eased off on pumping, which really helped us, actually. I reached a "brick wall" where pumping no longer helped me and was driving me batty. I'm very happy now nursing her all the time- her latch VASTLY improved at three months- and I think this is a comfortable balance. She gets about 10 oz formula a day.

I got NO HELP AT ALL from the hospital lactation consultants. All they said was I would "never make enough milk becuase you are hypothyroid". Period. All help I got myself from the web. The mothering breastfeeding forums, various websites including Dr. Hale's on breastfeeding pharmacology (he did the study showing that extremely little metformin gets through to breastmilk, and studied *why*), etc.

There really is a ton of help out there on the web, especially on the kellymom site. The thing that hurt me is that so many places, including Sears, kept saying "low supply is a myth and is really rare", etc. LIKE HELL. When it happens to YOU, oh my gosh, it's the worst thing ever and there is just all this blame. The mothering forums really ended up helping me- there is a whole group of low supply mothers on there. (There is also a lot of crap on those boards, but for this one thing, they were SO helpful.) I found out where to get domperidone (globaldrug.tv) and tons of other stuff. I also welcome emails from anyone else going through this.

The one thing I never though I'd have a problem with, given my ginormous breasts, ended up being the biggest problem I had.

Am

For PCOSers struggling with milk supply issues (or any other breastfeeding issue), please come to Soulcysters and visit our breastfeeding support thread. We're a friendly, diverse group. Some of us nurse exclusively and others are learning to make combo feeding work.

http://www.soulcysters.net/breastfeeding-cysters-support-158012/

Kristin H.

Yay.....thanks for this post, Jo! And all the commenters, too! It is wonderful, though sad too, to see so many folks with similar stories to mine.

After 3 years of undiagnosed infertility and failed treatments, I finally got pregnant and delivered my daughter in May. The milk issues started right away, and we started supplementing on day 5, after she had lost 15% of her birth weight.

In the past three months I've been through hell, pumping, taking herbs, Reglan and Domperidone, and just trying to figure out why these things were happening. I finally got a semi-diagnosis from my RE who said I was in "the gray area" of PCOS -- something I called back to ask about after reading Lisa Marascos work online.

I have written a lot about my struggles on my blog and here is my most recent post about it, just a few days old!

http://chinacat.dnsalias.org/roller/page/sunfrog/20060904

Am

http://www.007b.com/breast_gallery.php This is a site with a picture of hypoplastic breasts, which some PCOSers have.

Diana

Jo, thanks so much for opening up this discussion. We'll have Lisa Marasco over here taking notes pretty soon! :-)

I had to fight tooth and nail for my PCOS diagnosis, mainly because I am a "thin cyster" and no insulin resistance (but, oh, there is hair and oh, there is acne and oh, tiny breasts!). By the way, to those who are needing support, the cysters are awesome. My Sher doctor was the one who finally gave me the diagnosis, based on my LH:FSH numbers and the string of pearls on ultrasound. Neither my Sher doc, nor my GP would give me Metformin, because of the lack of insulin resistance. At the time, breastfeeding was nary a dot on the horizon. My recurrent miscarriages were diagnosed as related to DQ Alpha 1 compatibility issues with my husband, so the PCOS issue took a backseat. Fast forward to pregnancy and birth: some breast growth during pregnancy, but not much. No leaking of milk whatsoever. I had an IV in so long during labor that I was retaining more water when I left the hospital than when I arrived. The first theory of why I was bleeding from both nipples and had no milk was that the water retention, which also occurs in the breast, messed up the latch. I took papain (papaya chewables) for that and it resolved quickly. The next theory as to why I didn't have any milk was that I was given too much ephedrine during labor (I kept crashing from the epidural, low bp). I should say here that I had FABULOUS lacation consultants who I met with several times a week. They had so much knowledge and were encouraging, and I was determined to breastfeed, so we plodded along for six weeks like this. I'll condense weeks 2-5 as: drink beer (galactagogue), take fenugreek, take blessed thistle, drink rice milk, take herbs that I have subsequently blocked from memory, goat's rue or something?, pump, breastfeed, pump, pump, breastfeed, pump and take the famous domperidone for a cool 80 bucks a month. By the way, if someone wants to know what happens to your bowels on domperidone, write me on the side. Finally, at my final lactation appointment, I filled out my medical history form for the hundredth time it seemed, and in my bleary, new mom haze, I checked "PCOS" probably for the first time. And, this is when my LC called my attention to Lisa Marasco and the real reason why I did not have breastmilk. I handed in my pump, shed many many tears, hung up my herbs and bought into the world of formula. And I swore that I would educate anyone and everyone I could. And if I ever get pregnant again, which is doubtful, I will get a prescription for Metformin, come hell or highwater.

Thanks for letting me get this off my chest.

Erin

I have PCOS and started on Met 2 months before getting pregnant with my son. My breasts were up 2 cup sizes by 8 weeks pregnant. I stopped taking Met at 13 weeks pregnant--didn't develop GD but also gained weight in crazy amounts that, to this day, I'm not sure how it got on my body. I just didn't eat that much. And my breasts were up another 2 cup sizes by the time he was born (since I started at a C, I wasn't too pleased by all of this).

Regardless, P was born naturally at 37w5d and nursed within his first 30 minutes of life. It took a few days for my milk to come in, but we really never struggled with nursing. I only got engorged a couple of times and barely leaked after the first week, but seemed to have plenty of milk for P. Since he gained 3 pounds in his first month, I have to assume that I did. The problems came when I went back to work. I pumped for him for daycare until he was 13 months old and we nursed when we were together until he was 18 months old. Pumping was a nightmare. Even though I had plenty of milk when I was nursing him, I struggled every single day to pump enough for him for daycare the following day. I was pumping 5-6 times a day, 20 minutes at a time, to get 12 ounces of milk. I never tried herbs but I did try pretty much everything else--oatmeal, downing water like there was a shortage, etc. Nothing helped. And when I went back on Metformin when we had been TTC#2 for 7 months with no luck (that was 16 months ago), it made P sick to his stomach. He was only nursing once or twice a day at that point, so I weaned him rather than hoping he'd adjust to Met.

It wasn't until several months after I weaned him that I even learned that women with PCOS can have breastfeeding problems. If I'd known that, I never would have gone off the Met in the first place.

Next time, I'm staying on it through pregnancy and nursing. Assuming there is a next time.

Elizabeth

Just wanted to post a link to the Lisa Marasco article I read on the LLL site. It's excellent but it's on the 2nd page of Google hits so it might not be that easy to find.

http://www.lalecheleague.org/llleaderweb/LV/LVAprMay05p27.html

mijk

THANK you so much. I've got a friend with pcos And I truly think no-one ever told here that she could have low milksupply because of that. She tried so damn hard and felt so guilty., I've never seen it elsewhere here.. (and I did a lot of breastfeeding reAding

Your homebirth story made me laugh. Because i had some experiences the other way round. Are you sure you wanna go to hospital? With the harsh lights and the bacterias and the ob 's who want to do ceasarians right away ;-)

Moxie

Jo, thanks for this. All I know is what I've picked up from my friends who've had hypoplastic breasts and/or PCOS. Do you mind if I link to this post on Ask Moxie?

jenny

Hey - I can't contribute to the PCOS/breastfeeding conversation, but I will put on my child development Phd hat for a second.

Babytalk is actually good for babies, as long as you also speak to them normally. We do it instinctively - we shape our mouths in more visible ways and it helps baby learn to talk. Evolutionary psychologists call it motherese and think that it harkens back to the dawn of human verbal language use.

So that idiot in the bathroom stall can eff off.

Jo, from the road

Yes, Moxie, link away!

And jenny, right on. Ms. Pottystall's rationale, by the way, was that "If anybody ever snatches 'em, they don't go all goo goo ga ga, but they can say 'My name is Suchandsuch and YOU'RE NOT MY MOMMY!'" Because, you know, that's how one-year-olds talk.

Thanks, all, for all the great comments! Keep 'em coming!

Celeste

PCOS poster child here; it took me a combo of Met plus Avandia to become pregnant.

Cindy's post is almost a direct echo of my BF experience. One setback we had going for us was DD's jaundice and how lethargic it made her. The other was my nips, but let's face it--if you use a Pump In Style and can only get 2.5 oz max from both sides in one day, with very little fat, I think it's safe to say you've got a supply problem. I truly felt that only my left side had any milk--and of course it was the flatter of the two nips so the PIS helped out there. I was prepared to pump off of one side exclusively if that would do it, but no--not even with Fenugreek and oatmeal could I ramp up the supply. It was miserable watching DD lose weight, and when that happens...all family and pedi support for BF goes right down the toilet. I fell into the thank-goodness-for-formula camp and make a point of not looking back. I did try to keep pumping that 2.5 oz for a few days but then I figured out that I was having the worst of both worlds--no real benefit from BF and an extra chore when I could be holding my baby. So I let it go.

Prior to this I had read something on one of the PCOS sites saying that 50% of PCOS mothers who chose to BF had supply problems. So when you start with the PCOS population, get down to the percentage who gave birth, and then get down to the percentage who attempted BF and couldn't do it...I'm not really sure if that is a valid statistic for how this relates to PCOS as a whole.

But in the back of my mind I'm always going to wonder if Pitocin somehow hurts supply. I was on a high dose (which I also blame for DD's jaundice). BF for me was like a trip to the Bermuda Triangle.

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