PCOS

cultivated by community
for MotherSpirit

I am only about 5 mos PG but already I am getting the first signs of colostrum!!! (Or at least there is something leaking ever so slightly from my breasts where there never was before.) And my breasts are still sore - that never really went away after the first trimester - and continue to grow. So why is this such good news, and why am I sharing such personal details about my breasts of all things?

Logan did not get the full benefits of breastmilk from me, ever. He had *some* milk for the first two months, but I had some serious supply problems. Some of the supply problems were I'm sure due to poor BFing advice, no doubt! But I also had some more obvious problems...my milk didn't come in until 8 days pp, and even once it did Logan continued to be dehydrated and lethargic despite the fact that he was being exclusively breastfed at that time. I had literally NO breast changes during pregnancy - no soreness, no swelling, and definitely no growth. After I had him, I had no leaking, did not feel letdowns, never once felt remotely engorged (though I know those are not necessarily reliable signs of adequate supply). My doctor at the time blamed my difficulties with BFing on the hormone imbalance resulting from my PCOS (supposedly some womyn with PCOS have trouble BFing but not all - I signed up to participate in a study on this with Dr. Hale). I weaned Logan completely at 2 months but he started comfort nursing again somewhere around 18 mos. I never produced milk again though. So I have focused all my energy and meditation and prayers on the goal of having no supply problems whatsoever for this baby. I have envisioned successful nursing with plentiful milk. The fact that I have such an abundance of breast changes AND the very early signs of milk production already is a reassurance, and for it I am very grateful!

THE RESPONSES:

• I have PCOS too, but my symptoms all disappear for the length of time I'm breastfeeding. I NEVER had any supply problems - in fact I have an overactive letdown and leak leak leak until my babe weaned (at 3!) If you have it can you give me more info on the relationship between PCOS and supply issues?
  
  
  • Breastfeeding with PCOS seems to fall into one of two categories - either womyn have some problems with supply like I did, or tend more toward OALD and abundant supply like you had. Interestingly my PCOS symptoms were at their worst while I was breastfeeding - I started having some symptoms I'd never had before, like massive hair loss (above what would be normal post-pregnancy), cystic acne, etc. Once I stopped BFing those symptoms went away. Your experience seems to be more common for womyn w/PCOS, and my theory on that is that BFing helps the mother's body metabolize glucose better and if your PCOS stems from the insulin resistance then it would make sense that your symptoms would go away while nursing. I *think* my PCOS stems more from overproduction of estrogen and luteinizing hormone (LH) instead, and I think there are other womyn in a similar situation as mine that are being diagnosed with PCOS but might actually have something different.

  
  There is very little scientific information on the subject so far. The best theory I've heard is that womyn with PCOS have either more or less prolactin than an average womyn, therefore affecting milk supply. I had my prolactin level tested while I was having the supply problems and it was very low. Usually abundant supply and OALD are associated with high prolactin levels, so maybe that explains it for cases like yours? Out of curiosity, what are your PCOS symptoms like during pregnancy? Mine are much worse, much like while BFing (though I am obviously very hopeful that the early signs of my body preparing for BFing are a sign that this time will be different).

  The more I talk to or read about other womyn with PCOS, the more convinced I am that there actually at least 2 different disorders with different causes that are labeled under the PCOS catch-all, and I think within a decade or so researchers are going to figure out that they were completely wrong.

  • I've been tested for insulin resistance and that isn't a problem. My problems with staying pregnant hae been because of estrogen spikes, and I don't have the classic PCOS weight problem. While pregnant with my sonI had a ton of symptoms that were new - like cystic acne, abnormal hair growth, and while nursing him I had so much hairloss I had to cut my hair to hide it! This pregnancy I was taking a homeopathic remedy specific to my endocrine problems and the only thing I had going on was prolonged morning sickness
    
    
    • Question for you PCOS gurus. I have textbook PCOS symptoms, but have never been 'diagnosed'. So how do they 'diagnose' you? I've had hormone levels done a few times because of lack of periods (pre-dd) and they always came out normal. I had an u/s once too, to rule out PCOS and it showed one tiny ovulation cyst (sure enough I got my period exactly 14 days later), but I had been on the pill for 5 years prior and that was my first ovulation after coming off. Anyhow, what constitutes being diagnosed? I have so many of the symptoms it's pretty impossible to ignore this might be why I am the way I am.
      
      
      • Stein leventhal syndrome or PCOS is a collection of symptoms. They diagnose it by seeing how many symptoms you have after ruling out other things.

      Hormone levels are one way, testing for insulin resistance is another, ultrasounds are another, and so is laproscopic surgery to examine the ovaries.

      Then there's the list of symptoms and correlatory disorders - irregular cycles, non ovulatory cycles, ovarian cysts, cystic breasts, abnormal weight gain - particularly around the middle, signs of androgen poisoning like irregular hair growth and loss, cystic acne, luteal phase defects, corpus leuteum cysts, false positive pregnancy tests, vitiligo (patches of skin that lose their pigment) prolonged bleeding, very painful periods, passing large clots with the menstrual flow, lots of post ovulatory spotting, or very painful periods with scant brownish black flow. And your symptoms change over time.

      Being put on the pill is one of the only treatments they have for it because it controls the bleeding and makes you shed the lining regularly (and womyn with pcos are at hiher risk of uterine cancer because the cells are dividing for so long) and it tends to arrest the cyst formation. With womyn with insulin resistance the drug metformin has been really useful as well.

      The worst time to have gotten an us to check for cysts would be right after a time on the pill because the cysts would have shrunk or disappeared. If you had pcos and they did laproscopic surgery they would have found that your ovaries were a pearly white colour from scarring though.

      When I was first diagnosed the only treatments they had were clomid - not a good idea for womyn with a lot of cysts - or in my case surgery where they cut pie shapes out of the cystic areas to allow the eggs to be released instead of absorbed into the cystic mass. ah.....no thanks!

    • I have irregular and anovulatory cycles, weight gain around the middle, corpus luteum cysts (I am REALLY prone to these quite badly) and acne. I do not have problems with abnormal hair growth or loss, prolonged or heavy bleeding (in fact mine is the opposite - I have very light bleeding for only about 3 days). Few women will have all the symptoms or the same combination of symptoms.

    Other possible symptoms are skin tags (weird little flaps of skin that grow on you), dark velvety patches of skin that occur especially under arms, knees and breasts, repeated early miscarriages (often due to low progesterone) and a high sex drive from the increased testosterone. I can personally vouch for the latter but it seems to be a less common symptom.

    Lots of womyn with PCOS who get PG will fail the 1-hour GTT and do fine on the 3-hour. The reason for this appears to be because the insulin resistance associated with PCOS is like reactive hypoglycemia. IOW what happens is that immediately after consuming something high in sugar you get a very high spike in sugar levels much like a diabetic would, but if you test again a bit later there will have been an abnormally dramatic drop in insulin (which would not be true if you were truly GD). Basically GD means that your body is not producing enough insulin, if I understand correctly, but reactive hypoglycemia/PCOS/insulin resistance means that your body produces MORE insulin than usual and therefore the glucose clears from your bloodstream faster than it should.

    I was diagnosed both by u/s (and I agree that right after coming off the Pill would not give you an accurate diagnosis because the ovaries had been suppressed for so long) and by blood levels. This was long before they knew about the connection between PCOS and insulin levels. They tested my FSH and LH levels, and the ratio was more than 3:1 - a lower ratio is normal, higher is often indicative of PCOS. If you went to a knowledgeable doctor now you could have your insulin and glucose levels tested...I have the specifics somewhere in my bookmarks about what the levels would be to indicate PCOS, but I've never had these tests done.

    I have laparoscopic surgery to remove corpus luteum cysts that won't dissolve on their own every 3 years or so. I successfully avoided the last surgery by making the cyst disappear through use of visualization. I also eat a low-carb low-sugar diet and take the supplements chromium and inositol, rather than seeing an allopathic doctor or taking metformin/glucophage to manage the insulin issues. If it has been more than 2-3 months since I've had a period, I will use progesterone cream for two weeks and then stop, bringing on a withdrawal bleed so that my uterine lining doesn't become too thick. (Not having periods often enough can lead to endometrial hyperplasia - basically an overgrowth of the uterine lining, which can be a precursor to uterine cancer).

    • I have a glucose meter at home because of the 'gd' I had with dd...(FWIW, they stopped that test with dd after 1.5 hours because my levels were so high, they said it was GD no question...now I know had they continued, my levels probably would've plummeted!) Anyhow, I have tested my blood sugar at 1 hour, 1.5 hour and 2 hours after a meal. What's very interesting is at 1 hour, my BS is usually on the high side. By 2 hours, it's back to fasting. If I eat something high in sugar, I get below fasting.

    Right now I'm following a low carb low sugar diet, but can't say I do when I'm not preg! Will have to perhaps try harder. I take chromium and I find it helps immensely also...can you tell me more about inositol?

    Thanks for that info...I have never gone longer than 3 months without a period (well, aside from pregnancy and lactation amennorhea!)...and 3 months only happened twice, but it's good to know about the progesterone cream. I only used it for one cycle before I got pregnant this time, so don't have much experience with it.

    Now another question...does anyone know if the hormonal imbalances with PCOS can affect your release of hormones during labour??

    • This is interesting.... I had the exact same thing happened to me when I was PG with Logan. My BS level was 210 at the 1-hour test, and they considered anything over 120 as reason to take the 3-hr test and anything over 180 was "definite" GD. But because my HMO was too cheap to pay for a referral to a specialist, they went ahead with the 3-hr GTT instead where they saw that even though my 1-hr was through the roof, the 2 and 3 hour levels were well *below* normal. In a way I'm glad my HMO was being cheap and ordered the heinous 3-hr test, because if they'd just put me on insulin instead based on the 1-hr result I would've been in even worse shape. A lot of this is stuff I've only learned about with this PG, after that awful OB was trying to set me up for a repeat section based on my previous "GD" status.

    Inositol is actually a form of a B-vitamin - the way I understand it, it is closely related to niacin. Most North Americans are deficient in both chromium and inositol (I have links on foods that are naturally high in inositol, if you'd rather go by that than take supplements, since the supplements have not been tested for safety during PG). My theory is that the reason PCOS (and syndrome X, which is a similar insulin problem that affects men as well) is so high on this continent is diet-related. I really strongly believe that diets high in refined carbs and sugars are starting to destroy people's health in less obvious ways.

    I have gone up to 8 months without a period before (not even lactational amenorrhea or PG). I got an appointment with a reproductive endocrinologist (RE) who was the one who intervened with my son's conception, and I had a D&C done because of the overgrowth of the uterine lining. When I would say to my OB that I was worried about going so long without periods, she'd say "well, you're only in your early 20s, that's quite normal". ARGH!

    This thought HAS crossed my mind before that PCOS could affect labor, but I don't even want to go there!! For a long time I avoided thinking about my c/s in a critical way because I assumed my labor stalled due to dysfunctional hormones related to the PCOS. But there is no research on this, and anecdotally from the PCOS lists I would say some womyn have no problems with labor progress and others do - which I think is probably just reflective of the fact that a LOT of womyn get sectioned for FTP and we with PCOS are no exception. I also believe from my own experience that hormones are greatly influenced by the mind, so I refuse to believe that there might be any biological problem that would cause my labor to stall again.

    • I did fine on the three hour gtt both times Ihad it done (not pg btw) and my hormone levels are out of whack - I have estrogen surges that are big enough to start up post ovulatory breakthrough bleeding and once bled like the third day of my period for 6 months straight after not having a period for 9 months....but I wanted to say that a lot of PCOS sufferers have gone the route of seeing fertility specialists to get pregnant and from everything I've observed this leads to intervention ridden pregnancies and fairly negative outcomes in their very managed births. I do not think that PCOS affects labour at all.
      
      

    • Not only does the pill mess up the diagnostic accuracy of U/S but just a normal cycle can mask PCOS. I remember going to the hospital every three days for two months for them to chart the growth of the cysts (I was used as a guinea pig and my ovaries actually appear in two text books...I want to know where my royalties are!!!) They had assumed that they would continue to grow but instead they fluctuated according to the stage of my cycle. They would sometimes seem to disappear then the next U/S there would be thousands of them compleatly covering my ovaries. So you could well have had PCOS but had the misfortune of getting your U/S at the wrong time.

    I had two laporoscopies and was told that I would have to have an operation if I ever wanted children. I never worried about getting pregnant since I was told it was IMPOSSIBLE for me to have kids without medical intervention....guess no one told my daughter that. If I had a daughter who had PCOS I would never allow her to be operated on, it was completly unnessasary and I now realize they were using me for research. They already knew I had them so why subject me to over 50 U/S and two operations? They are only diagnostic tools, they do not help the disease at all, so why? I feell really taken advantage of when I think about the whole thing. Really it is just another form of abuse, isn't it?