PCOS Support Thread

[lauraska]

Hi everyone! Welcome (m)eat to live and EliMak79! Just wanted to check in to see how everyone is doing. I'm down 20+ lbs and feeling pretty good. The metformin is definitely re-regulating my cycles. Even though I'm still on the pill, I can just tell that things are working, if that make sense. The Whole30 eating has been amazing too. Since my July and August Whole30s (which weren't perfect, but were still pretty darn great), I've basically stuck to a Whole30 eating plan with the occasional treat if I deem it worthy. For example, I wasn't tempted to buy regular old ice cream at the grocery store, but when a new gourmet ice cream shop opened three blocks from our house AND offered coconut milk-based flavors, I figured it was worth it to ingest a bit of sugar to try their delicious stuff. And it was! I also occasionally have a drink if we're out doing something social - but I stick to only one because I'm not really supposed to drink with the metformin. Bottom line - I am much happier now that I can see progress, even if it's just slow and steady progress.

How's everyone else doing?

[Shantess]

Hi ladies! Haven't been online in a while but thought I'd check in and see how ya'll were doing and say hello. Welcome to the newbies...although it's unfortunate we all had to make each others acquaintance on a PCOS forum, isn't it? Ah well, "c'est la vie". Nice to meet you

It's been almost 2 months since my Whole30 although I've continued to eat paleo (which I had already begun prior to my Whole30) with some slight modifications (I eat potatoes and bananas a couples times per week, as well as a couple glasses of wine). I feel really good and my horrible digestion is improving day by day. My skin is up and down but generally better so I'm extremely grateful for that. As for the overall hormonal situation, irregular cycles and lack of ovulation, well, that hasn't changed at all Maybe 4 months of paleo isn't that long but I've kinda given up hoping it would be my mircale cure, haha.

Alijac, still holding off on the promethium? I caved and took the provera my doc gave me last month. It did what it was supposed to do (ie: induce a period) but this cycle things look to be shaping up same as before so I'll likely need to take another round of it. Grrr...

(M)eat, yes, vitamin D deficiency is quite the norm for anyone with any kind hormonal imbalance, including PCOS or HPA disregulation. I take 1000 IU daily currently although I think I'll be upping it to 5000 IU soon as I live in Canada and our sunny weather is pretty well over for another 8 months.

Question: anyone know much about Congenital Andrenal Hyperplasia (CAH)? The symptoms are identical to PCOS and women with CAH are normally misdiagnosed as having PCOS. My doc never tested my cortisol or aldosterone levels but since adrenal deficiency runs in my family, I think I'll be making an appointment to discuss this with her. Just wondering if anyone else was tested for this??

[midwestgirl80]

Hi ladies- I am on day 8 of my Whole30, and I'm very grateful for this particular thread! After visiting three different doctors in three years for periods that lasted 14 days + and being told all my tests were normal and to just to go on the pill, the latest doc finally said she thought it was PCOS. She's doing the standard hormone testing and I have the test to see if I'm ovulating next week, so should know more in a few weeks. I've already had an ultrasound that showed lots and lots of follicles. Anyhow, while I'm waiting for the final verdict, I've been researching like crazy, which eventually led me here. It wasn't the sole reason I started the Whole30, but it was a big factor. Glad to see the support that is here.

Shantess, I've not heard of CAH, none of my many doctors have suggested it, but as you probably gathered I am none too impressed with them anyhow! Might do some research now...

[ldmills112]

Hi, ladies! I'd love to join your group. I was diagnosed with PCOS at 19 after one medical professional finally suggested that all the different problems I was seeing different doctors for might actually be symptoms of a single underlying cause - PCOS. I've tried pretty much all the conventional medical approaches to treatment over the last decade - some helped, some didn't, but nothing seemed to keep working for very long. The last 2-3 years I began to gain weight rapidly despite an intense exercise regimen and a strict low-cal/low-fat/conventional wisdom diet.

A relative did a whole30 last year and had a lot of success with it. I spent a lot of time researching paleo after that and started to run across a lot of PCOS success stories. And the whole lifestyle philosophy just makes a lot of sense to me - eating high-quality, natural, nutrient-dense foods; getting sufficient sleep; functional exercise without abusing my body with excessive cardio. My food and exercise choices have gradually been trending in this direction over the past year or so, but I feel like it's time to really go all-in.

So here I am now, 30 years old, and on day 7 of my whole30. Already I've noticed that my clothes fit a bit better, my mood is more consistent, and my skin is GLOWING. Obviously, I hope to see significant weight loss, but my ultimate goal is to start ovulating (never have before) and conceive naturally.

[Julie Durfee]

Laura, I could have written your post myself! I've not been diagnosed with PCOS quite that long but I knew I had it for a while before they diagnosed me in 2006. I have type 2 diabetes as well and have probably closer to 100 lbs to lose. I had fertility issues and mild help conceiving our daughter but then had pre-eclampsia at 34 weeks. I am on Day 5 of the Whole 30 and it's going well so far. My goal is to become healthy for the first time ever and hopefully conceive our second soon after.

Good luck!

[alijac]

Hello ladies! Welcome to the new joiners - like Shantess said, too bad we're meeting here, but we may as well get healthier together!

I've been doing pretty well, though September starts rough territory for me and I haven't navigated it as well as I would like. The 1st is my anniversary, the 13th is DH's birthday, today's my grandma's birthday, then we have three more family birthdays between now and October 5th! So lots of celebrating, which means lots of temptation. I haven't eaten horribly, but I've done dumb things like reach for gravy to put on the super dry roast my MIL made...not thinking about the flour in it. Totally not worth it, by the way. There have been other similar instances. I think I've determined that gluten is what makes my skin itchy - esp. my scalp, inner forearms, and the backs of my calves. Good reason to avoid it. I also think I've figured out that a little raw cow's milk (which here has to be labelled "for pet use only") doesn't break me out, which is cool, even though I now prefer plain coconut milk in my coffee.

Anyway, I really need to strengthen my resolve and give some thought to what a "special occasion" means and how I should be celebrating them. On the plus side, I'm down nearly 10 pounds.

Shantess, yep, still waiting on the prometrium. I need to take a pregnancy test before I start it on the VERY slim possibility, but I don't have any (and think I'm in denial that there's even a chance...lol!)

midwestgirl - are you getting testing done because you're trying to conceive, or just want a baseline to see what's going on with the PCOS? Glad you found us, too!

ldmills, glad you're seeing results already! Although I had done 6 rounds of clomid trying to get pregnant, none of them worked. I started trying to eat better, manage stress, and started going for acupuncture, and 4 or 5 months later, I was pregnant. Sending good thoughts you can conceive naturally, too.

Julie - your little one is super cute! I have over 100 lbs to lose (though I try to think of it in smaller goals than that...it feels overwhelming). I too want to feel healthy for the first time ever, after a lifetime following "conventional wisdom". Keep us posted how your Whole30 is progressing!

[midwestgirl80]

Hi Alijac - No, not trying to conceive (yet). My long periods have just gotten worse and worse with the side effects that come with it also worsening, to the point I am absolutely miserable for two weeks every month. It's completely taken over my life. And it is a concern at this stage in my life, if it is something that could cause fertility issues. But really, right now I just want an answer! I don't want to go on the pill if it is just to cover something up, like the other docs have suggested. If I know what it is and I can do something about it, I'm happy to go on the pill to manage the symptoms but I want to treat the underlying cause too - well, as much as you can anyways. Even before reading ISWF, I really believed the food you ate caused so many terrible things to happen to our bodies. For years I got almost daily headaches, and only finally got rid of them by cleaning up my diet. No special diet at that time, just simply cutting out a lot of processed food and cooking more. Now, I rarely get headaches. So it wouldn't surprise me if my terrible diet in the past has caused other issues. Anyhow, I'm rambling now!! We shall see...

Good luck with the month of special occasions! At least you have a great support here to come vent to when you really, really want a slice of birthday cake! And in those moments, remember those ten pounds and be proud!

[midwestgirl80]

I got my test results back today - hormones were all normal, but the progesterone test showed I hadn't ovulated that month. I am going for an updated ultrasound (my latest is two years old) and then doing the progesterone test again next month. If nothing changes, she is sending me to an endocrine specialist. Very frustrating! I took it as a positive my hormone levels were normal, but after doing some research it seems there are plenty of women with PCOS that have normal hormone levels. So now I am sad again

On a positive note, I am on Day 26 of the Whole30 and although it hasn't been easy (or perfect) I am quite proud of myself. Clothes are fitting better and I sleep much heavier each night. Have not seen improvements in all areas I was hoping to, but am largely pleased!

Hope all of you are doing well!

[Shantess]

Hi midwestgirl! That's great you've seen some improvements! Keep focusing on the changes you've experienced so far...some of the other stuff may take longer and even if some of it doesn't change, you've obviously done something that the rest of your body agrees with.

I too am one of those women with PCOS whose hormone levels are "normal". Having said that, my endo only ever did day 3 tests. When I did a month long (or cycle long I should say...certainly ended up being longer than a month!) female hormone panel test with my naturopath it showed that my day 3 results were basically consistent throughout my entire cycle...meaning what I produced on day 3, was the same at day 14, day 22, day 45, etc. Definitely NOT normal. So just because they're "normal" at one point, doesn't mean your hormones are normal throughout your whole cycle.

[Shantess]

I start my second Whole30 tomorrow and am totally pumped! I kept eating paleo even after my last Whole30 back in July but I've added back in wine a couple times a week and the occasional gluten-free grains. My Mom has been visiting the past two weeks (which means less than stellar food choices as we love to bake together) and it was Canadian Thanksgiving last week, too. So I feel the need to detox a bit and get back on the wagon. She leaves tomorrow (which makes me sad) so it's a good time to jump back on board.

I'm gonna try more of an autoimmune protocol this time as I've been reading lots about the immunity connection with PCOS recently. I'm intolerant to eggs so they've been out for ages but in addition to the Whole30 guidelines, I'll also be giving up all nightshades and nuts (I love nuts!!). I have Diane Sanfillippo's book "Practical Paleo" which has some meal plans in it to help out so I'm all set.

How's everyone else doing?

[goody.texie]

Hi everyone!

It's been kind of a slow night at my place, so I read all your posts... PCOS sucks! I was diagnosed at around 15 or 16, and now I am 30. I have totally experienced the symptoms - insulin resistance, appalling acne, irregular periods, etc, etc. None of it really went away when I managed to lose some weight about 5 years ago, and then I rapidly regained the weight anyway, and have found it hard to shift since then! Anyway, my weight generally stays at a stubborn 72 - 75 kilos, which is about 10 kilos over what it should be.

Anyway, I hopped on here just because I think you guys are all doing a great job sticking to your whole 30 diets, and as the days pass I expect I might need a bit of inspiration from you again. My husband persuaded me to try this diet when I was at a moment of weakness - completely hungover from a night out. I'd been feeling that I could not control my sugar cravings - needing a hit of something sweet after lunch and dinner most days - but I am on day 4 and so far feeling pretty awesome about my self control, and have been able to decline offers of cupcakes, chocolates, and my biggest weakness, ice cream.

Hopefully the next 26 days go just as well! My ultimate goal is to lead a healthier lifestyle, and I hope you all keep updating the thread with stories of how you are going.

[Alexandra Kreiman Walters]

I went off Metformin a year ago because I lost 70 lbs on a Paleo diet. Now my symptoms are back. I just had a transvag ultasound that found 6 one centimeter cysts. I'm miserable and my doctor won't put me back on Metformin. They want to put me on oral contraceptives, but I'm over 35 and actually worried about taking them.

I suppose I'm not actually contributing to this forum--just complaining. I've never heard of anyone else getting worse ovarian cysts on a Paleo diet.

[Alexandra Kreiman Walters]

Question: anyone know much about Congenital Andrenal Hyperplasia (CAH)? The symptoms are identical to PCOS and women with CAH are normally misdiagnosed as having PCOS. My doc never tested my cortisol or aldosterone levels but since adrenal deficiency runs in my family, I think I'll be making an appointment to discuss this with her. Just wondering if anyone else was tested for this??

CAH is very different. Those girls have "ambiguous genitals" and they are really unmistakable once you've seen it. They usually need reconstructive surgery. (I did all the research when I was diagnosed with Addison's Disease.)

I have adrenal insufficiency and the symptoms were really severe. My skin got so brown that I looked like a different race. I could barely stand up from the back pain. I vomited all day long without reason. I drank big glasses of salt water as a bizarre craving. I dumped fast food salt packets in my mouth to keep from fainting when the weather was over 70 degrees. I was so dizzy that I ran into things and people thought I was drunk all the time. I was a mess!

If you do have Addison's Disease, the Paleo diet really helps with the side effects of the steroids. I can't recommend it enough.

[Shantess]

Hi everyone...I am just half way over my second Whole30. Not sure why but I am finding it way harder this time around. I've been eating paleo consistently for several months but not quite as "squeeky clean" as the Whole30...I fell off the Whole 30 wagon on the weekend and had a couple glasses of wine - nothing ridiculous but certainly not approved. I don't really feel bad about it, it was a conscious decision, lol. I think that when I first found the Whole30 last time, I was really pumped and hoped that this may resolve some (if not all) of my PCOS symptoms...that hasn't happened so I guess that's why I am slightly less motivated this time around although, as I said, I am still eating paleo. It's really bizarre too because I've been randomly craving carbs the past couple weeks, which is weird because I haven't had any bread, cereals, etc. in months and most of it I can't eat anyway because of gluten and egg allergies. I assume it's because the weather is getting cold here again (I'm Canadian) so my body wants comfort food, lol.

Alexandra, thanks for your reply regarding CAH...although I shoulda been more specific. I meant LOCAH ("Late Onset"), not regular CAH. It is less severe than regular CAH and does not have the deformities, etc, present with CAH. LOCAH actually appears identical to PCOS in terms of symptoms and it often gets missed in the blood work as it require specific enzyme testing.

[lauraska]

Hi all!

Sorry I've been MIA. After doing two Whole30s, I took a break when I contracted a horrible stomach virus that lingered for almost a month! I was just trying to get any food in me that would stay down or not cause major stomach pain, so my paleo eating went out the window. But I'm planning on starting a new Whole30 after Thursday and I'm looking forward to it.

In PCOS news, I recently started on a new medication that is making the rounds as a very successful helper for those with PCOS and insulin resistance. Like Metformin, it is a diabetes medication, but it has shown to be very helpful with weight loss. It is called Victoza. The one downside is that it's an injectable but after having gestational diabetes and having to prick my finger a few times a day to take my blood sugar, the needle doesn't really bother me. Yes, there is talk about it causing thyroid cancer, but that has ONLY been found in trials that were done on rats, not humans. Not too worried about it and I've seen GREAT results with it. I know there are folks here who are trying really hard to combat PCOS without any pharmaceutical assistance, so I definitely don't want it to seem like I'm discouraging that approach. Just wanted to put it out there for anyone who does want to do a combo of paleo/clean eating and medication.

I'm down 25+ lbs and even with my temporary detour from paleo eating, I've continued to lose a lb here or there. I'm looking forward to getting back to feeling 100% and kickstarting some more weight loss.

Hope you are all well!

[hornsfankatie]

Hi my PCOS sisters, My name is Katie and was officially diagnosed with PCOS in 2002. I would have a cycle maybe twice a year. About 6 years ago I did manage to lose 70 lbs and my periods seemed to be come somewhat "regular" for the first time in my life. Well I have slowly let all that come back. Who am I kidding? My cycles have been pretty much non-existant once again for about 3 years. My face looks like Grizzly Adams if I don't keep it in check on a daily basis. I also suffer from hypothyroidism.

I have started reading much about the paleo way of eating and I believe it is the right thing for me. I am starting to make the transition, however, I am not going to do my Whole30 until after the new year.

Should I continue my metformin while doing my whole30 or see what my body does without it?

[Shantess]

Absolutely keep taking the Metformin! A healthy diet does not work overnight and depending on how you've been eating the past several months or years, it will likely take several weeks or months to balance out. Hormones are complicated things. After you think your body may have stabilized from the Whole30/paleo way of eating, then you can try tapering off and see what happens.

[(m)eat to live]

I keep seeing a reoccuring theme. It seems a lot of women with PCOS also have a hypothyroid condition. Wonder if there has been any research done on a link between the two, does anyone know?

[SCrames]

Hi All, Been reading all your posts and reazlied, what the heck - I need to chime in!

I am 24 years old, day 11 of Whole 30, and a fellow PCOS-er. Was finally diagnosed about 1 month ago. I suffer from some embarassing symptoms - facial hair, acne, problems losing weight, and of course, the abnormal periods like woah (was spotting for almost a year!!).

Right now, really hoping that my IUD and whole 30/paleo will start the slow but sure process to rid of some of these symptoms! Great to see some others out there!

[TrayS]

I keep seeing a reoccuring theme. It seems a lot of women with PCOS also have a hypothyroid condition. Wonder if there has been any research done on a link between the two, does anyone know?

I haven't looked at the research, but my anecdotal experience says yes, there is a connection. As far as which came first, the chicken or the egg, that I'm not too sure.

I have an identical twin sister. We both have symptoms of PCOS (though no formal diagnosis) and we are both hypothyroid to varying degrees.

My experience has been that getting treatment for the underactive thyroid has helped the PCOS symptoms. One very obvious, common PCOS symptom that I've always had since I started menstruating was irregular cycles. Since I went off hormonal birth control five or so years ago I have had cycles that vary from 28 days to six months, they were just wacky and totally unpredictable. Then, I started levothyroxine (just a low dose, 25 mcg) in December 2011 and immediately had five 28 - 31 day cycles in a row. This year I haven't had a cycle longer than 44 days, with about 34 days being the average (and I can pinpoint the few longer 40-day-ish cycles coinciding with stressful events/traveling). I've had 10 cycles so far in 2012 - amazing!!!

The difficult part for me was getting the thyroid medication. My TSH tested "normal" though my T4 and T3 were borderline/low. My experience was that most doctors are really ignorant to any hypothyroid signs other than abnormal TSH, and aren't willing to treat levels that are suboptimal but still within the reference range. I actually switched health plans and doctors so I could find one that would treat based on symptoms. Clearly it has worked.

[Jo Ferris]

Hey, haven't read this whole thread yet but just wanted to say Hey to my fellow W30 SoulCysters!

[Jennifer1991]

Hey ladies! I am 21 years old and was diagnosed with PCOS when I was 16. I have been overweight all through my teens and have been on various diets. Having tried Paleo out about two years or so ago I noticed a big difference in my symptoms! My periods become more regular and I lost a bit of weight. However a year ago I started taking Metformin. I've recently been having stomach troubles with it and want to come off of it. I'm hoping that if i can really get my lifestyle and diet under control then I could come off of it! I haven't done a whole30....I have the book in front of me, but being a student I am really scared that I will fail!

Just wanted to say hi and that I really appreciate all your stories and advice and support on this forum!

[Jo Ferris]

yeah i couldn't be on Metformin for long either and it didn't really seem to make all that much difference on the maximum dosage... whole 30 is def. the way to try

[Sarah C. Langland-Johnson]

Hello,

Just wanted to jump into this thread to meet some new friends who suffer from this too. I have a questions as well and maybe you all can help me. I just had my annual visit with my OB/GYN and we discussed my (usual) lack of periods for the last two years. I had normal periods all through high school and early twenties until I went on Nuvaring and I have never been the same since. Nothing but skipped periods, no cycles, lost tons of hair on my head and started growing it on my face, chest, tummy, etc. Now I am pretty much diabetic (A1C 6.4) and in the last four months since I did my first W30 in Sept/Oct I have had periods every month. They are about 35-40 days apart, but I have always had a longer cycle than most. My OB dr. wants me to still take medroxyprogesterone (Provera) for the 10 days at the beginning of every month, and in fact, wants me to do this for 14 days to start with since I hadn't been taking it all for the months I have been having a cycle. She is not convinced that my hormone levels are normal. I feel so frustrated like it is just a "quick fix" for her, without actually pursuing any testing, like finding out what my hormone levels are doing throughout the month with labs instead of taking pills. I am sorry, this is really getting long, but I am just so at the end of my rope dealing with this. I know I should probably find a better dr who listens to me more, but honestly, this is the second ob/gyn in 2 years and I am tired of trying. Thanks in advance for the listening ear.

[heatherlauren]

.