PCOS- What works?

JodieSmith15

Don't be afraid to see a doctor for PCOS treatment. I've been taking spironolactone to control the hirsutism for about a year and it's no longer an issue for me. Since you are already confident you have PCOS being diagnosed officially won't be so bad, and seeing a doctor will help with treating the symptoms.

fheppy

Also one thing that really really really annoys me:
When people claim to be nutrition experts, with decades of research to back this up, yet their tickers indicate a big weight loss (which means a big weight gain in the past to begin with). No offence, but this makes no sense. Someone with such a deep personal interest in nutrition which starts decades in the past, should not end up overweight to begin with, no? Hardcore enthusiasts for any lifestyle, when their ticker indicates a recent big weight loss, they do not convince me they are not just new enthusiasts convinced they found the magic cure for all, or that their lifestyle was not that easy to follow or effective to begin with, for them.

^^ This. is. excellent. I could not have written it so nicely.

I have PCOS as well, diagnosed in 2008, but in reality i have it since 2001. Other than metformin, doctors don't give ****. not even the endo.
they say the same lose weight and your hormones will balance out.
PCOS gives me incredible sugar cravings and i have to admit i am a sugar addict. I also found when i am on my good days i eat moderate carbs and feel fine. when (rarely, unfortunatey) i eat low carb, the next day i feel wonderful, no craving, nicer clearer skin, good focus/improved concentration. I like this Atkins guy more and more. I am trying to switch to that type of diet because it seems to work. i just need to be more strict.
when i eat lots of carbs like today (*blushing*) i feel anxious, bite my nails, lips, can't focus and crave carbs even more. this is an evil circle.
I would also note, when i was ~200lbs i still had severe hirsutism and this obviously hasn't improved when i gained even more weight due to depression and ignorance. on the other hand it did not get worse, even when i got to 260lbs.

also, the other day i saw a pretty lady (healthy bmi) at school and i sat next to her when we were discussing a project and i did not want to believe my eyes how long her hairs on her neck were, and i thought to myself 'at least every other day you should shave' :sad: so what i am trying to say is even if i lose weight it doesn't mean all my hormones will be balanced out. -> i might be remain hairy even if i will be a health weight. *sigh*. soo hard.
And. a bit off track but i write it, it might help somebody. laser hair removal doesn't work for me. learning it was such a disappointment for me. i threw away loads of money. next time i throw it out the window. pcos sucks.

NJGmywholewrld

I have sat here and read every posting in this thread. I too have PCOS, I was diagnosed over 20 years ago. I am very well, self educated on the subject. As for insulin resistance, not everyone with PCOS has insulin resistance. I, in fact am just the opposite, my sugar levels run too low. While I was pregnant, I was told to increase my carbohydrates to get my insulin up to a more favorable level. I live a very low carb lifestyle....20 carbs or less per day. It becomes easier to live this lifestyle over time. Did I give up cake, cookies and ice cream completely, Ummm...No!! I do enjoy an occasional treat, within moderation. Calorie counting alone works, yes, it worked for me at one point, but I found that gaining the weight back was unfortunately, was easier. I am losing weight, but not the typical 8-10 pounds on average that a lot of others lose. I lose on average, 3-6 pounds a month. Living a LC lifestyle makes me feel healthier, and more energetic. I guess what I am saying is, that everyone is different, and it is all about trial and error. What works for one may not work for others.

onionparsleysage

This research study on losing weight with PCOS advocates eating most of your calories at breakfast for weight loss http://scopeblog.stanford.edu/2013/08/13/study-shows-bigger-breakfast-may-help-women-with-pcos-manage-symptoms/

Eating in that pattern decreases insulin & testosterone levels, which is good if you have PCOS! And you can definitely manage PCOS well with weight loss IF you're obese. There is a smaller contingent of women with PCOS who are thin, so it clearly doesn't always diminish with weight loss.

If I were you, I'd get my hormones measured as a baseline. You can still choose to decline treatment and work on your weight loss instead. It's important to see how YOUR hormones change over time, not simply how they compare to average values.

tmaryam

I have sat here and read every posting in this thread. I too have PCOS, I was diagnosed over 20 years ago. I am very well, self educated on the subject. As for insulin resistance, not everyone with PCOS has insulin resistance. I, in fact am just the opposite, my sugar levels run too low. While I was pregnant, I was told to increase my carbohydrates to get my insulin up to a more favorable level. I live a very low carb lifestyle....20 carbs or less per day. It becomes easier to live this lifestyle over time. Did I give up cake, cookies and ice cream completely, Ummm...No!! I do enjoy an occasional treat, within moderation. Calorie counting alone works, yes, it worked for me at one point, but I found that gaining the weight back was unfortunately, was easier. I am losing weight, but not the typical 8-10 pounds on average that a lot of others lose. I lose on average, 3-6 pounds a month. Living a LC lifestyle makes me feel healthier, and more energetic. I guess what I am saying is, that everyone is different, and it is all about trial and error. What works for one may not work for others.

My insulin resistance was diagnosed by my LOW blood sugar. Insulin resistance has to do with increased levels of insulin and not necessarily blood glucose levels. Every person is different, that's one thing we can all agree upon. I also have sky high triglycerides and cholesterol but my doctors never treat it because I'm not overweight. The first doctor who diagnosed my hyperlipidemia said I'd probably have my first heart attack before age 50. I'm getting up there... they still won't treat it.

You can Google "insulin resistance and hypoglycemia" and you can see that they go hand in hand.

LoveInnocent

I have pcos and have no insulin resistance. My blood sugar levels are very good, its my hormones that are out of wack, or used to be. I take synthoid for my hypothyroidism 88mg, two pills on sunday and thursday one all other days in the morning. And then I also take Viorelle birth control. I used to be on loestrin and my body was regulated to it but it was discontinued so I'm on Viorelle. Maybe its because they caught it when I was 17, but overall I am pretty healthy, my cholesterol used to be high but I worked at an ice cream place one year and worked a lot of hours so I would have fast food for dinner and the year before that our kitchen was being renovated right before the blood tests, I have since changed my diet and I don't even eat fast food now (but I am getting Chipotle on April 29th after a final exam to celebrate my last college exam) and because I worked at an Cold stone I won't ever go there again and it makes me picky about other ice cream places too.

Point being not every person with PCOS is the same, there are different levels of it, I eat a lot of carbs/sugars though 75% is fruit/yogurt.

albertabeefy

I have sat here and read every posting in this thread. I too have PCOS, I was diagnosed over 20 years ago. I am very well, self educated on the subject. As for insulin resistance, not everyone with PCOS has insulin resistance. I, in fact am just the opposite, my sugar levels run too low.

My insulin resistance was diagnosed by my LOW blood sugar. Insulin resistance has to do with increased levels of insulin and not necessarily blood glucose levels. Every person is different, that's one thing we can all agree upon. I also have sky high triglycerides and cholesterol but my doctors never treat it because I'm not overweight. The first doctor who diagnosed my hyperlipidemia said I'd probably have my first heart attack before age 50. I'm getting up there... they still won't treat it.

You can Google "insulin resistance and hypoglycemia" and you can see that they go hand in hand.

^^^ This. Much more common than people think. Also of note, FYI the "sky-high" triglycerides can often be reduced to normal with a very-low-carb ketogenic diet. ... just sayin'.

As for me, I've said what I have to and I'll stay out of it now. I do stand by what I've said.

/out ...

zaellany

I was diagnosed with PCOS 13 years ago, when I was 24. I'd been having symptoms for years. I went to an actual endocrinologist who did a ton of bloodwork in addition to a pelvic ultrasound, to give me a diagnosis. What she told me, and what was reconfirmed by a reproductive endo I went to a few years later, is that the biggest telltale sign of PCOS in anyone is an abnormally high free testosterone level (mine was 85 at diagnosis, normally in women it's under 20) and abnormal DHEA, androstenedione, and 17-hydroxyprogesterone levels. My endos also looked at my total estrogen, total progesterone, and estradiol levels, along with some other stuff. If anyone hasn't had a comprehensive endocrinological panel done as part of their diagnosis, I would recommend finding an endo who will order one for you, as it's a really good way to get a picture of what's happening in your body. It has to be timed with your cycle, and it's good to do one pre-ovulation and one post (that's what my endo did). As an example, one thing I know is that even with "more normal" free testosterone, mine is still higher than most women, and so I build muscle faster than a lot of women do. That affects how I work out, how much weight I lift, etc.

One thing I'd just like to add to this debate: PCOS is not a uniform disorder that presents with the same symptoms unilaterally in all patients. It's a syndrome, not a disease. There are different clinical manifestations that will present to indicate the syndrome. Some women with PCOS are normal-weight; some are not. Some women with PCOS have cystic ovaries that show on ultrasound; some do not. Some women with PCOS are IR, some are not. There are not a lot of really great, wide-ranging, longitudinal studies done on multiple thousands of participants as to what works to treat all manifestations of PCOS. Losing weight helps some people; others find it increases overall health, but doesn't do much for their PCOS symptoms. Some people need to go low-carb or low-glycemic to lose weight, and some people don't. Drugs work really well for some people, and do almost nothing for others. etc. etc. Figuring out what has helped me be healthier and have fewer chronic problems like insulin resistance, high blood pressure, and out-of-whack hormones has been a long process and it is still ongoing. When I was diagnosed, I was a mess: chronic pelvic pain, really high blood pressure (150/105), borderline diabetic, debilitating hormonal migraines 15+ days a month, tired all the time, huge mood swings, episodic depression, etc. I wasn't ovulating at all and I had endometrial hyperplasia, so I bled irregularly, sometimes for a week or more at a time. Plus the always-fun PCOS trifecta of head hair loss, abnormal body hair growth, and acanthosis nigricans. My original endo told me I had some of the most severe symptoms she had seen and when I was struggling to see any relief in the first six months of being treated, told me I had one of the most "brittle" (untreatable) cases she'd seen. I've managed to resolve almost all of those issues, PLUS have a baby (yes, I had help with that) but it's taken a lot of work and research to do so.

What's helped me, ***YMMV***
- Metformin (13 years and counting)
- Spironolactone (5 years and counting - for me, Spirono is a miracle drug. Once I got on it, I was sorry I had not gotten on it years prior. But it's a category X drug and you shouldn't get on it unless you are really, really, seriously done trying to have kids)
- I do a 40-40-30 (carbs, protein, fat) diet. High-carb diets were disastrous for me, not just in terms of making me gain weight, but in terms of hunger, energy level, PCOS symptoms, etc.
- Replacing traditional products with organic (dairy, meat, fruit, vegetables) - there are some compelling studies out there about how RBST and nonorganic pesticides are big-time endocrine disruptors, and my endocrine system is screwed up enough. I try to eat whole, unprocessed foods and not a lot of packaged/processed foods.
- I went gluten-free last year after an IBS-C diagnosis, and unexpectedly lost weight and had some other cool, positive things happen. I have normal, predictable hormonal cycles now, which I never even had on hormonal birth control. Not saying everyone with PCOS needs to go GF, just saying what worked for me.
- Regular exercise helped me a TON, especially weight lifting. I would do tons of cardio and it wouldn't do anything but make me tired. Once I started lifting weights, my overall energy level went up and my body composition started changing. I'm only working out heavily once a week right now, for an hour (whole-body cardio and weights) but am trying to add in two 30-minute HIIT workouts so I'm working out a total of three days a week, in addition to the walking/cycling I do most days just as part of my day.
So why am I on MFP? I got stuck losing weight after dropping 35 lbs, and nothing else was working. My nutritionist recommended I try this.
One thing I can say is that most of the lifestyle changes I have made that have helped me, I learned about through other women with PCOS, not from a doctor. I think that the process of saying "here are my symptoms, here is what I am trying, here is what works for me" is helpful, even if all advice is not applicable to all situations. I never would have tried Spirono had I not had someone on a board tell me it worked for her amazingly well, in terms of treating the exact symptoms I was struggling with. So regardless of differences of opinion, I appreciate everyone who has posted here talking about what they do to treat their PCOS, and how well it works for them. It's all good information that might help someone who is struggling - the way I was struggling 13 years ago - to find something that works for them.

Dragonwolf

- I went gluten-free last year after an IBS-C diagnosis, and unexpectedly lost weight and had some other cool, positive things happen. I have normal, predictable hormonal cycles now, which I never even had on hormonal birth control. Not saying everyone with PCOS needs to go GF, just saying what worked for me.

All of this (including the stuff I didn't quote, because it was really long).

One thing to note regarding the gluten free thing - from what I've seen, there's some correlation between PCOS and gluten sensitivity, so going gluten free is definitely something that may help. What some people don't know, too, is that casein (the main protein in milk) is often cross-reactive with gluten. This means that the body reacts to them both the same way. Combined with the high insulinogenic effect of milk (specifically casein), it can be an issue with people with PCOS, too, and may be worth cutting out in addition to gluten.

fatninja111

Read through this entire post and there is really good information here. I was wondering if anyone can help me out. I am 37. I know everyone is different but I am just wanting to know what other people's experiences were. I haven't had a regular period for 17 years. I went through two rounds of testing and basically the doctors told me I was too fat. Just lose weight. So since I didn't mind not having a period, I wasn't too concerned. Last year I was diagnosed with diabetes (actually probably had this for 4 years prior) and decided that I didn't want to end up taking insulin shots, so I wanted to lose weight. Lost about 40 pounds. Sugar level is down. Dr. sent me to a OB/GYN. She took blood and listened to my history. Said Yep, you've got PCOS. No ultrasound. My only symptoms are 1. No period 2. Thinning hair on top of head 3. Diabetes (although I don't believe this is because of the PCOS, my family history is HORRIBLE in regards to Diabetes). So the OB/GYN immediately suggested the BC pill. (generic form of Ortho Tri cyclen LO - triestarylla) I've never been on any type of BC pill before.

Here is what I need help with if anyone can...
1. I am most worried about my hair loss. I know. This isn't life ending. But it seriously depresses me. And I don't want it to get worse. The OB/GYN said it should help. But after reading stuff on the internet I am terrified that it is going to make it worse. Any body have a good experience with this? Like birth control helping with the hair loss? The OB/GYN said my androgen was slightly elevated which apparently causes the male pattern baldness symptoms. I am currently using Rogaine which was pretty effective although the OB/GYN prescribed Provera to kick start the period and it caused major hair shedding.
2. The second would be this....is it even necessary for me to treat this? I don't mind not having a period. I am not going to have kids. The only detriment would be the worry about cancer. But I cant seem to find any definite studies or sources about the cancer risk?

Any one else have effective treatment for thinning hair? I read about spiro and might ask my doctor about that. I should also mention that I am on metformin and my A1C has lowered from a 9 to a 5.1. I was hoping to be off pills altogether but the doctor never mentioned anything.

Sorry for the long post. I just can't seem to make up my mind. Thanks.

zaellany

Here is what I need help with if anyone can...
1. I am most worried about my hair loss. I know. This isn't life ending. But it seriously depresses me. And I don't want it to get worse. The OB/GYN said it should help. But after reading stuff on the internet I am terrified that it is going to make it worse. Any body have a good experience with this? Like birth control helping with the hair loss? The OB/GYN said my androgen was slightly elevated which apparently causes the male pattern baldness symptoms. I am currently using Rogaine which was pretty effective although the OB/GYN prescribed Provera to kick start the period and it caused major hair shedding.
2. The second would be this....is it even necessary for me to treat this? I don't mind not having a period. I am not going to have kids. The only detriment would be the worry about cancer. But I cant seem to find any definite studies or sources about the cancer risk?

Spirono will arrest your hair loss and then eventually your hair will grow back; I say this because this happened to me. I was losing hair in fistfuls when I started spirono and now my hair is so thick they have to texturize/thin it, when I go to get it cut. You may need to print out articles on spirono and take them to your OB/GYN so they understand what you're talking about. Spirono is a blood-pressure drug that has anti-androgen effects and it was traditionally prescribed to older men.

The big cancer risk with PCOS is endometrial cancer, especially if you aren't having periods. The association is not ironclad, but this article gives a good overview: http://www.medscape.com/viewarticle/763153
Breast cancer - everything I have read and what my docs have told me is that we actually have a LOWER rate of breast cancer (that doesn't mean NO risk, so do your self-exams). Ovarian cancer is a tossup. I think there's been one study about liver cancer that concluded the risk was more related to nonalcoholic fatty liver disease than PCOS. There are other reasons to treat your PCOS, that are outlined in this article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2683463/
One thing a lot of people don't know: there is a 4x-10x increased risk (depending on the study) of heart disease and sudden cardiac death in PCOSers that REMAINS CONSTANT REGARDLESS OF BODY MASS, meaning even thin PCOSers have a higher risk. (http://atvb.ahajournals.org/content/15/7/821.abstract, http://www.karger.com/ProdukteDB/Katalogteile/isbn3_318/_022/_38/fhore40_03.pdf) The cardiac risk comes from elevated androgen levels, not necessarily body mass, insulin resistance or blood lipids. This is one reason why "just lose weight" is not an adequate treatment for PCOS. Even thin cysters should consider antiandrogenic treatment to mitigate heart disease risk, but convincing doctors that you need it is apparently pretty difficult.

HTH

s_yeatts

So low carb is the best way to go?? I've been counting calories and the weight isn't budging...

fatninja111

Thank you ellamay77 for your information. One further question? Would the spirono regulate periods if it would lower the androgens? Or is that something that only the BC pill will do?

zaellany

Thank you ellamay77 for your information. One further question? Would the spirono regulate periods if it would lower the androgens? Or is that something that only the BC pill will do?

I honestly don't have a clue...this would be something to research. I do know that my reproductive endo told me that regulating periods without progesterone (even with Metformin, Spirono) etc. was really hard.

Two things you might consider to mitigate your endometrial cancer risk: getting either an IUD, or doing endometrial ablation (the latter is permanent, forever birth control). I've seen a couple of articles on how IUDs are recommended for PCOSers specifically for uterine health reasons - I don't have time to search a link at the moment, but if you Google, you should be able to find them. Endometrial ablation would have the same, much more permanent, effect.

mzbek24

I had it, diagnosed in July 2012. I actually 'knew' well guessed it based on the symptoms. My periods would stop and start and I was moody as hell at those times( I mean a lot more than usual PMS) my body seemed to be developing more hair in weird places, I had acne worse than I ever had.

Basically, I had a the cysts on my ovaries, which they took an ultrasound for, and only a slight hormone imbalance revealed from my blood tests, where I had too much testosterone.

I saw a specialist referred from my doctor and all he basically told me was "Get down to 65kg"

I still haven't got anywhere near that low, but I'm 76kg.
I asked to be put on the pill to help the hormones, and I took on a low GI diet which resembled sort of a diabetes type fo diet (I got a bunch of recipe books)

And basically just from those two things I managed to show no signs of PCOS by November of 2012. (I went to hospital with pains in my stomach and they did an ultrasound to see if a cyst had burst) I also joined a gym and got some personal training in that time, but it wasn't very consistent and lasted maybe about 2 months.

My best friend has it as well, but worse than I had. She has now lost 30kg...and she got a personal trainer, joined a gym, and joined some team sport. That helped her stay accountable.

Dragonwolf

So low carb is the best way to go?? I've been counting calories and the weight isn't budging...

As evidenced by this thread, "best" is debatable, but it is one of the most consistently successful methods, yes. I also recommend going the whole foods route (which can happen by default with very low carb, but not always, and a lot of people include artificial sweeteners), which cuts out a large amount of the non-insulin-related crap that is in processed foods.

Make sure to include strength training in your workouts, too. Not only does it help bone health, but also appears to help the endocrine hormones regulate.

Two things you might consider to mitigate your endometrial cancer risk: getting either an IUD, or doing endometrial ablation (the latter is permanent, forever birth control). I've seen a couple of articles on how IUDs are recommended for PCOSers specifically for uterine health reasons - I don't have time to search a link at the moment, but if you Google, you should be able to find them. Endometrial ablation would have the same, much more permanent, effect.

I didn't know this about IUDs! I have one simply because I'm horrible about exact timing for pills and the other alternatives did a number on my system in more ways than one. I also like that it has a lower dose of hormones (or none at all if you get the copper one). It's cool to see it has other benefits.

candidcamster

I have this condition, symptom-wise it is under control (TOM is pretty regular every month, sometimes off by a few days, but it always shows up) and recently my cramps even went away *woohoo*. lol Anyhow I read seaweed is good for this condition (I eat Trader Joe's Roasted seaweed or Annie Chun's roasted seaweed snacks) because of the high vitamin & mineral content, especially iodine which many of us are deficient in and don't even realize it (this can give your thyroid a much needed boost depending on the person, it helped me). I also recommend looking into Chasteberry/Vitex (I get mine from Puritan's Pride in liquid dropper form) to help regulate your TOM and help alleviate symptoms of PCOS. I am not on medication, and the only meds I've taken for this condition is birth control which I had a bad reaction to (years ago).
HTH

By the way you're doing a fantastic job, maintaining is not gaining, if what you're doing isn't working try switching it up, I'd check out low-calorie plans (1500 calories a day, something like that).

Bethie_J

bump to read later.

HappyStack

So low carb is the best way to go?? I've been counting calories and the weight isn't budging...

Your calories are way too low most days if your diary is logged accurately. If it isn't, you haven't been counting calories. A fully logged day here and there isn't going to do it. Also, a lot of your fully logged days show very high amounts of "calories earned" from exercise. If you're not totally sure that's accurate, it probably isn't, and you're probably overeating even though you think you aren't if you "eat calories back". Most people will aim to eat 50% of them back, at most, but others - to be more accurate - will use a TDEE calculator (search for it), focus on attaining those calories and not log exercise.

It would be best if your macros (protein, fat and carbs) were protein-driven, too. So a higher-protein diet, which will help prevent muscle-mass wastage while you lose weight.

Log at least 3-4 weeks with no loss of 0.5-1lb (up to 2lbs if you're very overweight) a week before deciding counting calories "doesn't work" for you.

I would also reiterate what Dragonwolf says about whole foods and strength training, and what mzbek said about joining some sort of gym class/team sport to keep you accountable and make sure you exercise.

uchube

As I understand it, one of the primary culprits behind weight loss difficulties for PCOS women is the underlying insulin resistance. That's not unique to PCOS. What works for "not normal" PCOS women works for just about all "normal" overweight people.

What you may not understand is the level of insulin-resistance with PCOS is very similar to that of a type II diabetic. Not all "normal" overweight people are diagnosed diabetics. Many don't even get diagnosed with pre-diabetes or even metabolic-syndrome... (even though, yes, they may have some insulin-resistance ... just not as much as someone with PCOS.)

As such the dietary restrictions for healthy PCOS lifestyle and weight-loss are different than for "normal" overweight individuals.

Thank you for saying this in the manner you did................I was not going to come off as nice saying the same thing.

Some people fail to realize the amount of damage that PCOS does causing Metabolic damage. A lot of people are merely overweight and that is why they can eat the same way as they did, just smaller portions and lose weight just fine.

The rest of us that are damaged in the way of hormonal imbalances from IR / T2 Diabetes, Thyroid issues and then the female hormone issues from PCOS are a totally different story.

agreed