Moms with PCOS? (Poly Cystic Ovarian Syndrome)

sweaterboots

Hi all!

I run a PCOS group in Los Angeles and am curious how many of you May 2017 moms are cysters, and what your experiences are!

One of my main symptoms of PCOS has been Insulin Resistance (body makes enough Insulin but my body doesn't absorb it) which causes psychological effects (intermittent depression, anxiety, panic attacks) starting around age 25 (am now 33). I have been taking metformin for about 3 years, which regulated my cycle, helped me ovulate, and completely erased all of the psychological symptoms!!  Metformin is a drug commonly taken by diabetics to aid in Insulin absorption. I am not diabetic, but many women with PCOS have insulin resistance, and can become diabetic if it goes unmanaged.

I was worried that going off of metformin for pregnancy would bring the depression/anxiety back, but have been extremely relieved to find that, instead, pregnancy has completely balanced my hormones!  Barely any mood swings (just crying here & there), clear skin, no nausea.  Just tired!  What are your experiences?

Jellybeanqueen13

Hi! I have PCOS. My main symptoms have been not ovulating and that losing weight is extremely hard (I run 3-4 times a week and eat a pretty clean, healthy diet and am still overweight). I've been taking metformin to help with insulin resistance and synthroid for an underactive thyroid. I still don't have regular cycles, so this pregnancy and my previous pregnancies were conceived via fertility treatments.

My RE has talked to me about the importance of a low carb diet for those with PCOS, which I have found very difficult as I am also vegetarian. She also told me to avoid soy products, which would have normally been a major protein staple for me. So, I've been struggling with trying to increasing my protein intake.

I'm still on metformin, so I am going to talk to my doctor at my next appointment about when I should stop taking them. During my first pregnancy, I took it through the first trimester then stopped. Not sure if the recommendation has changed since then.

sweaterboots

It's always so interesting to hear the different experiences... Thank you for sharing. My doctor told me at 25 (rather coolly) I may never have kids. So part of me assumed we'd have a long road ahead to starting a family. Turns out the metformin was enough in my case and we got pregnant after 8 months of not preventing. 

I too have a thyroid issue (Hashimoto's), but haven't gone on any medication as of now. I'm so happy that IVF has worked for you! There are a few women in my group who tried but finally chose to adopt. It was so strange going into starting a family and not knowing if it'd even be possible. 

What kinds of protein have you ultimately depended on?

-Em

Jellybeanqueen13

I've been doing a lot of lentils, quinoa, beans, cheese, greek yogurt. I also sometimes make protein shakes.

I hear PCOS is pretty common, so hopefully we will hear from others. I really enjoy hearing other's experiences as well.

sweaterboots

WOW twins I'm just seeing!  How exciting!!

I'm wanting cheese & yogurt but am lactose intolerant so that can be a bit tricky, sadly.  I love me some big lentils though!

It is so nice to have the support from women who know the struggle. For too long hormones have been treated by society as an unimportant "that's just the way it is" casualty of being a woman.  I've learned from my own experience with PCOS that feeling depressed, anxious, and foggy are NOT normal, and you can work with a little trial and error on finding a chemical balance. It's also so fascinating to hear how similarly or differently it presents itself in different women.

Congrats again!
-Em

ScientistShesus

I was diagnosed with PCOS via an ultrasound last year (at age 29) after almost two years of trying to conceive naturally and with no luck. Looking back, I should have gone to the doctor much sooner to check because I never seemed to ovulate regularly (my cycles ranged between 9 and 60+ days), and I struggled with being overweight as a teenager. I finally got my weight under control in my 20's after switching to a low-carb diet and regularly exercising, but the diet/exercise didn't seem to fix my menstrual cycle, so I used to clomid to help conceive.   

When I was on clomid for two cycles, I have to say I felt the best I ever had in years! I felt the clomid really balanced my hormones from clearing up acne, to preventing bloating, and my PMS symptoms weren't even that bad! I think I will even ask my doctor to use clomid again if we decide to go for baby #2,  

sweaterboots

Congrats on your pregnancy!

It's not your fault, not going in sooner.  I never had regular periods and didn't even start until I was 16.  No doctor ever mentioned anything to me so I just thought I was 'lucky' having like 8 periods a year.  I was diagnosed at 25!

At 23 I asked my doctor to test my hormones because I suspected something was up and she literally scoffed at me and said I was too young.  I took her word for it but my symptoms kept getting worse.  I had never had panic attacks before so at first I thought something was really wrong with me, physically!  They started out as nocturnal, then got worse and happened during the day.  Ultimately before I decided 'enough' and switched doctors, I was always in a state of anxiety.  This was just not the 'ME' I've always known!!

My point is doctors are just starting to talk about PCOS like a real thing and not some made up "it's just hormones" imaginary disorder.  Many of us didn't have the knowledge or resources to find out sooner, but it's getting better!!

vrj0522

@sweaterboots - is your doctor monitoring your thyroid while pregnant? While you can get away with taking no medication when you are not pregnant, having an unbalanced thyroid during pregnancy can cause fetal deformities, preterm labor and/or miscarriage so I would definitely address it during pregnancy if you are not already. 

vrj0522

I was diagnosed with PCOS when I was 18 yrs old. Was treated with metformin and my doctor put me on birth control that I would take for one cycle every 3-4 months. That seemed enough to finally regulate my cycles in my late 20s although they were longer (6 week) cycles. I stopped taking both metformin and the birth control to regulate my cycles at around 28-29 yrs old. I also had been told that I might not be able to get pregnant so we were extremely surprised when I got pregnant on our first month trying. I guess the regular cycles meant I was ovulating, even if late. I also took D-Chiro Inositol for about a year before we started trying, which I read was helpful for PCOSers and fertility.

After DS was born, my cycles shortened in length to 5 weeks and I stopped taking anything to help the PCOS. I also have Hashimoto's but after having DS, I went down to a weight I hadn't seen since my late teens/early 20s. I was able to get back to that weight after DD was born and my cycles shortened even more after her to anywhere between 32-35 days. So pregnancy has definitely done me good with balancing my hormones. I have had 2 m/c's along the way, which I know are more likely when you have a thyroid imbalance and/or PCOS. I'm also AMA which adds to the risk of m/c. 

sweaterboots

@vrj052, Doc knows I have Hashimoto's but my blood tests revealed a normal-functioning thyroid!  He will be monitoring the blood tests each time to make sure.

Thank you for sharing your PCOS experience!  I too am at about 32 days/cycle when not pregnant.  I've heard great things about D-Chiro Inositol from fellow cysters here in LA, and at a PCOS symposium we attended recently. Am hoping pregnancy will regulate my PCOS too, but if not, the Metformin has been a dream and I never suffered any of the nasty gastro side-effects.  Whew.

LAMCH1980

I hope it's ok I'm posting here... I intro'd here and then my due date was updated to June 3rd, so I'm mostly on the June board. I was diagnosed when I was 32. I have problems with insulin resistance/ reactive hypoglycemia, not being able to lose weight, irregular, annovulatory cycles etc. I had a mc, so after 13 months of charting, ttc I was finally pregnant again in 2012. For that pg, they put me on metformin for the first time and I felt TERRIBLE. For some reason, it lowers my blood sugar too much. I stopped a few weeks in, but was able to maintain a healthy pregnancy. I do have good news though. While pregnant AND breastfeeding, most of my symptoms subside! I hope you all will experience the same relief. Breastfeeding helped my anxiety a lot so it was good for both me and baby. ❤️

sweaterboots

@LAMCH1980 you should keep posting here! It's important to have a PCOS support group no matter what

It's remarkable how different everyone's chemistry is. My blood sugar tested fairly normal but I swear metformin made me feel like myself again for the first time in 5 years. I had tried bio-identical progesterone cream for a couple years and it helped a little, but it wasn't enough! I could still see the big 3-month lows coming in like a storm system.

My husband met me when I was depressed and anxious and I kept telling him "this isn't the real me..." He loved the me he met, but I think he was truly surprised when the fog lifted. I am so much calmer, relaxed, and happy. Of course there are still off days but I'll take that to waking up, heart pounding out of nowhere anytime. I will say pregnancy so far has made me feel pretty balanced!

Feel free to post here anytime with any random questions. Lots of ladies have such good advice from their own experiences!  I'm so glad your pregnancies have been a success.

-Em

ScientistShesus

@sweaterboots I also always suspected something was off for me too, but I asked two different doctors (in my early 20's) to check my thyroid and both said I was too young to have thyroid issues.  It was frustrating, but I guess I just took them at their word.

Looking back, I also had anxiety/depression since about the age of 12-13 (when I hit puberty). I asked my parents to seek professional help as an early teen, but the psychologist I saw said I was "too young" to have anxiety. By 16, I told my family doctor that my social anxiety actually prevented me from doing normal things and making friends, but his response was "try and get over it. No one has ever died from an anxiety attack." I couldn't believe it!! Anyway, its very interesting to know you had a similar experience with doctors. 

 

inomniaparatus2

I was recently diagnosed with pcos (march 2016) but mine seems pretty mild compared to everyone else's. I had a normal cycle and then went on birth control and when we were ready to start trying I went off and that is when my cycles started going wonky. I was diagnosed with hypothyroidism 9 years ago and have been on the same dosage since and so that's been fine. Other than my cycles not being consistent I haven't had any other side effects. I was put on clomid by my OB/gyn and wasn't  monitored so we switched to an RE and that's when I was diagnosed with pcos and found I was on the wrong dosage. So after getting everything figured out we were able to conceive on our first clomid+IUI + trigger which sadly ended up in a mmc. On our second try of clomid+ iui+trigger we got lucky again and here I am. I am overweight but have always been so I don't know how much if any pcos plays into that. 

sweaterboots

@SWE2 it's so great you don't have many symptoms, some of them can be very hard to deal with (a wide range of food allergies, hirsutism (male pattern hair growth on face, tummy, legs), long, painful periods).  I only have a few mustache hairs I have to pluck regularly, and a slight dark-patch "hormonal mask" on my face.  The anxiety & depression was quite confusing at first because I hadn't grown up with it, and many things can cause it.  Getting my hormones tested at 25 and seeing how sky-high my testosterone was my blessing that got me on the right track

Though weight management isn't a symptom of my PCOS as of yet, it is extremely common for women with PCOS to struggle with weight loss, even with clean eating and exercise.  In my local PCOS group many women who struggle with it are untimately able to lose some weight by cutting out almost all simple carbs (bread, pasta, etc) and avoiding sugar as much as possible. I think @ScientistShesus mentioned above using this method to lose weight!

-Em

abonnin

I had a great doctor that diagnosed me at 16 with PCOS and told me that I would likely have difficulty getting pregnant and also that I would have a hard time keeping weight off.   I scoffed at her at the time (being a skinny athletic teenager) but she was definitely correct.  

I too have insulin resistance, and also the PCOS 'shape' with larger shoulders/back, and have had painful ovarian cysts burst sending me to the hospital.   Despite this, when my husband and I were going through years of fertility treatments I asked for Metformin after researching it myself, and my fertility doc and my family doc both refused me!   I was so upset knowing that it would probably help me, but my level of insulin resistance was just under what was required to prescribe it.  

I wish we had specialized endocrine doctors in my area.   I think we would have spent much less on IUI's, IVF's and travel costs. 

sweaterboots

@abonnin it's such a shame when docs just deny women instead of letting them try something!  My doc acted surprised/skeptical when I said my psychological symptoms disappeared with Metformin.  But i don't give a HOOT.  I know what I experienced and that was coming out of a 5-year battle with depression anxiety feeling like myself for the first time in ages.  Like I said my blood sugar levels were normal but they still put me on it to regulate me, and poof. Depression & anxiety gone.  Are you in a rural area without a lot of doctor choices?

Laurieday10

I was diagnosed with PCOS in my early 20s, well before we started trying to have kids.  My insulin resistance and testosterone levels were not bad enough to require medicine, but I was put on birth control to regulate my periods.  Before that I would go months without a period.  In some ways that is good, because who likes to be on their period, but it always made me feel abnormal.  

With DD1 we had trouble, but I got pregnant on my first cycle after stopping Clomid. With DD2 it was a much harder and longer road. After 3 Clomid cycles and 4 injectibles+IUI+trigger shot cycles, I finally got pregnant.  I had a low milk supply with both, most likely due to my PCOS.  

After my experiences with infertility we decided we didn't want to have any more kids and assumed that we wouldn't need protection because I was infertile. Here I am 11 months later, pregnant with #3, completely by surprise. At my ultrasound last week, my ovaries looked completely normal, so apparently having 2 kids did something to even out my hormones. I still have Hashimoto's and I'll be on Synthroid for life, but hopefully I'll be able to fully breastfeed with this baby. 

Jellybeanqueen13

@Laurieday10 I had supply issues too with my first. I shed so many tears over this struggle. Even using a hospital grade pump and nursing frequently, my milk never came in like it should have. I had a few weighed feedings when my daughter was 3-4 weeks and the lactation consultant confirmed she was getting only half of an oz. I tried some supplements (Motherlove More Milk Plus) to increase supply, but ultimately switched to formula when my daughter wasn't gaining weight at 1 month.

I always thought it had to do with PCOS and my wonky hormones. I mean, my body can't get it together to have even one period a year, so having supply issues really wasn't surprising. I'm not sure what I will do this time.

Laurieday10

I had some major meltdowns with the first over not being able to strictly breastfeed, but once I started supplementing I realized it's not the biggest deal in the world. I get so mad when I hear women doubting there are real supply issues and insisting that we just didn't try hard enough. I promise I did everything I could to make breastfeeding work but she didn't gain the weight she needed to. In the end she just needed to eat, any way she could. With my second my milk came in early I thought maybe it would work, but she was in the NICU for 2.5 weeks and they had some crazy rules about when she could eat. Even with constant pumping my supply just didn't get there, but I expected this and wasn't crushed about not being able to exclusively breastfeed. The nurses in the NICU suggested it was my PCOS causing the supply issues, but I do know some other moms that have PCOS and had no issues. 

Jellybeanqueen13

Laurieday10 said:

I had some major meltdowns with the first over not being able to strictly breastfeed, but once I started supplementing I realized it's not the biggest deal in the world. I get so mad when I hear women doubting there are real supply issues and insisting that we just didn't try hard enough. I promise I did everything I could to make breastfeeding work but she didn't gain the weight she needed to. In the end she just needed to eat, any way she could. With my second my milk came in early I thought maybe it would work, but she was in the NICU for 2.5 weeks and they had some crazy rules about when she could eat. Even with constant pumping my supply just didn't get there, but I expected this and wasn't crushed about not being able to exclusively breastfeed. The nurses in the NICU suggested it was my PCOS causing the supply issues, but I do know some other moms that have PCOS and had no issues. 

This. So much of this. I have come across several people with that attitude in my life and that outlook hurts so bad when you are so invested in making it work and it just isn't happening. The lactation consultant said her latch was great and gave me a few extra pointers on top of what I was already doing. I feel confident that I did everything I could. At the time I was devastated and felt like my body failed me. Recently, I was diagnosed with hypothyroidism, so I am wondering if that (along with PCOS) played any role last time around in my supply.

That was 3 years ago, so by this point, I have made peace with that and I have a happy, smart, thriving toddler! Whatever happens this time, I am going to try very hard to not get so down on myself about it.

sweaterboots

@Laurieday10 @jellybeanqueen13 This is interesting, thank you for talking about it.  This is my first pregnancy, and I feel like with PCOS no one ever knows what to expect until we get there.  It's so helpful knowing some issues that might pop up in advance so I know what to look for.  Thank you for sharing

flychick-2

I have it, but I think mine is really mild compared to most. Basically I just had really crazy cycles (14 days to 6 months) as soon as I got my first period at 15. I was diagnosed in my late teens but because it didn't cause any problems I didn't do anything for it. Then later I went through a long time trying to get a thyroid condition diagnosed and under control so pcos kind of left my mind. 

Basically my cycles are still crazy, but I haven't had any problems conceiving. There was one time it took a couple months and my doctor was going to put me on clomid but I ended up pregnant that month.