PCOS lifestyle interventions

daneejela

I would like to open this thread as a place where we can share our knowledge about PCOS, most recent researches, experiences with lifestyle changes etc.

All experiences are welcome - paleo, vegan, high carb, low carb, high protein, low protein, name it...just one thing that I would really, really like is to keep it open minded, and not to slip into any diet "religion" in the expense of truth.

I challenge you to challenge all myths about this nasty disorder.

To start in the next few posts I will share my knowledge, experience with it, and researches I am currently inspired with.

It would be great if you share your experiences and findings so that we can help each other, and maybe help/inspire some future researches.

daneejela

To begin with, here are some basic info about PCOS.

What is PCOS?

PCOS is not disorder "per se", it's set of symptoms that we experience as a result of hormonal imbalance.

Is PCOS curable?

Many young girls get very depressed when they hear that PCOS is not curable. This is one of the reason why I have started this thread, because I would like to tell everyone that that is not so true.
PCOS is above everything very poorly understood at the moment, so question of curability is out of our knowledge at the moment.
It is worth mentioning that there are people that have experienced reversing or significant reduction of symptoms. My personal opinion (that I can not backup with research) is that is curable as much as any hormonal imbalance, it's just yet too early to have a complete picture. 15 years ago in my country only medical help you could get for PCOS was birth control pill or advice to get pregnant as soon as possible. Now we know much more about link between PCOS and metabolic syndrome, lifestyle effects, etc. I am strong believer that in the near future we will know much more, and that most of the PCOS would be reversible.

What are most common symptoms?

Most common symptoms are hirsutism (excess body hair), acne, hair loss (male pattern baldness), obesity, lack of menstrual cycle.
Not all women with PCOS develop same symptoms. You might have hirsutism without acne and very lean body, for example.

What does cause PCOS?

Since PCOS is not a disorder "per se", but set of symptoms that occur related, we cannot say what causes every case of PCOS since it's individual to each hormonal (im)balance beneath.
What is pretty much known is that BMI above or beneath normal range is significant factor in hormonal imbalance. I.e. there is strong link between metabolic syndrome and PCOS.
So, if you have PCOS and are underweight, gaining weight to normal BMI will most likely fix your PCOS symptoms.
Also, if you have PCOS and are overweight, loosing weight will significantly reduce PCOS symptoms.

Research also has shown that there is strong link between thyroid disorders and PCOS, so, one can say that PCOS is one of the expressions of low thyroid function. So thyroid check is a must if one has PCOS.

Some cases could have cause in adrenal glands (mal)function.
Bottom line is that if you have PCOS you should make a detail hormonal check.

Candyb38

High protein with a combination of strength training and running has helped me with weightloss. I also do intermittent fasting at times. My starting weight in 2014 was 212. I am now 150. I cant say ive had a lot of success with the other symptoms of pcos however.

daneejela

@Candyb38 thanks for sharing your experience!

Your experience fits into general diet/lifestyle advice for PCOS - to loose weight usually through Paleo diet.

In the wast majority of literature and online resources I've heard that this is the best way to fight PCOS (high protein, low carb). Research suggests that high protein diet is the best way to loose weight for women with PCOS.
I think that the official medicine books will recommend it as a best lifestyle intervention.

On the opposite side (and very confusing), there are some researches indicating that women with PCOS that have increased androgen levels should not consume high protein diet.
The reason behind this statement is that diet high in protein increases IGF-1 (insulin like growth factor) which lowers SHBG (sex hormone binding globulin) which is responsible to keep free androgens under control.

So, while, high protein diet is awesome for weight loss, according to that research it would not help with other PCOS symptoms (like amenorrhea, hirsutism, hair loss, acne...).

I haven't yet seen anyone that tried this in practice, but I will myself try to slowly lower my protein intake and see what happens.


One important thing for girls with low thyroid levels: it's not recommended to go too low with carbs, since carbs are needed for T4 to T3 (more active form) conversion.

Candyb38

I definitely dont go too low with carbs. I just watch my carbs no pasta and limited whole grain bread. A lot of vegetables i eat have carbs. Carbs are great for fuel. I do take metformin and just started spironolactone so hopefully i will see results with other symptoms. Thanks for the info!

AlyStardew

@Candyb38 I was diagnosed with metabolic syndrome and prediabetes in January of 2016. It is good to hear someone out there is taking the exact same medicine as me! It has helped me so much with my weight loss.

I have a question though. Do you ever get extremely hungry? Like you eat, and three or four hours later you are so hungry you can't think? This was my main symptom before I was put on medicine. I know that PCOS is related to prediabetes and metabolic syndrome. I'm just curious what made you get on those medicines. Also, my acne has done AMAZINGLY since spinolactone. I hope it works for you.

macchiatto

I'm too lazy right now to dig up any links, so I'll just share my own anecdotal experience over several years of experimenting: my cycles definitely become shorter and more regular when I eat lower carb. Weight loss also seems easier for me when I go low carb; if I go over about 100-120 gm/day (sometimes even 80 if it's higher sugar stuff), I start feeling hungry all the time and have major cravings.

Candyb38

AlyStardew wrote: »

@Candyb38 I was diagnosed with metabolic syndrome and prediabetes in January of 2016. It is good to hear someone out there is taking the exact same medicine as me! It has helped me so much with my weight loss.

I have a question though. Do you ever get extremely hungry? Like you eat, and three or four hours later you are so hungry you can't think? This was my main symptom before I was put on medicine. I know that PCOS is related to prediabetes and metabolic syndrome. I'm just curious what made you get on those medicines. Also, my acne has done AMAZINGLY since spinolactone. I hope it works for you.

I get hungry a lot if I'm eating empty calories which is why i eat a lot of lean meat. I am a chronic overeater so to change the way i ate was hard. I started metformin because i thought that my insulin resistance was making it hard for me to lose the rest of the weight. I lost 55 pds without meds changing my diet and exercising however it is difficult and i was hoping metformin would help. it hasnt. If you get hungry often im wondering what you're eating. Do you log your food? Feel free to add me as a friend. Maybe i can help. Thanks for the wishes i hope spironalactone works too

CrystalRoseMeow

I found huge success with doing a medically supervised weight loss program. My doctor put me on HCG hormone injections for six weeks and I followed the strict protocol as prescribed from her. I lost 35 lbs while on the hormones that has been successfully maintained thus far PLUS an average of 2lbs per week post treatment. My facial hair growth has slowed dramatically. My pain and discomfort levels have dropped. I am continuing forward with lipotropic injections and nutrition counseling written by a personal coach but will likely do another round of hormone therapy protocol towards the end of summer. I was really hesitant due to bad reviews from people using the protocol as a crash diet but after searching for women's stories who used the protocol to treat their PCOS I was encouraged. It was by far the best decision I ever made. I also crossfit/strength train and am going to start training for a half marathon after my next round of treatment. Avoiding dairy and gluten is always helpful to reduce symptoms and if you are serious about being in shape renaissance periodization diet templates are easily modified to fit the needs of someone with PCOS. (Replace casein protein with ancient nutrition bone broth protein and avoid gluten and dairy with the exception of whey isolate for the workout shakes has worked VERY well for my maintenance periods).

CrystalRoseMeow

Inositol powder and spearmint tea are great supplements to use as well.

FreyasRebirth

My personal experience was that many of my more troubling symptoms (thin-PCOS, I had crazy irregular cycles, painful cysts, and hot flashes) decreased in severity when I cut back on dairy. I think withdrawing it from my diet triggered my mild lactose intolerance but I don't mind. Most mammals don't make very much lactase after they are weaned, it is usually the people whose ancestors benefited greatly from milk who have the mutation for unhindered lactase persistence. I can still eat reasonable amounts of cheese so I'm satisfied.

chokhas

I am just trying to eat a balanced diet. the only thing I noticed is that I will gain weight if I eat back all of my daily and exercise calories. to avoid this I just eat about 2/3 of my sport calories n I do not gain. I am pretty much eating everything even sweets n cake if I feel like it. life is too short to life without chocolate

Candyb38

chokhas wrote: »

I am just trying to eat a balanced diet. the only thing I noticed is that I will gain weight if I eat back all of my daily and exercise calories. to avoid this I just eat about 2/3 of my sport calories n I do not gain. I am pretty much eating everything even sweets n cake if I feel like it. life is too short to life without chocolate

I am noticing the same problem with eating back the calories that i exercise. Im kind of staying the same rt now. Ive gotta be a little more strict with that.

Penthesilea514

You can manually edit the calories for exercise that MFP give you if that makes it easier. I edit mine to fit closer to accurate burns but I know many edit them to "0" when they don't want to eat back all the calories. MFP's exercise calories are way too generous.

Fuzzipeg

Picking up on the thyroid connection with PCOS.

Stop the Thyroid Madness, the site and book is of the opinion the thyroid numbers game is flawed because the original blood samples were devoid of information, the persons thyroid status, if known was not recorded not that of other family members. They are strongly of the opinion the outcome of these scales would have been very different.

Best practice for diagnosing the various thyroid conditions say tsh, t4. t3, antibodies and more should be tested, it is then possible to identify the cause of the symptoms, be they be caused by adrenal issues or other gland problems. Here in the UK it is no longer the practice to prescribe t3 even tough some of us are genetically incapable of making the conversions of t4 to t3.

Dietary information says we, females, should have 150 micron of iodine a day. As general guide lines, 100 ml of milk has 30, yoghurt 60, a medium egg is 24, dark green veg comes in at about 4 per 100 grams. Fish like cod comes in higher. Salmon is a better fish because it contains both iodine and selenium. My diet did not hold up. I would advise using a good vitamin and mineral product to enhance one's intake, increasing the possibility of a better up take. (some doctors treat at a much higher iodine number.)

Being hypothyroid will cause digestive issues which deplete the digestive microbes which help us absorb our food. Digestive microbes are also placed at risk when you take antibiotics enabling the least helpful ones to dominate. This can also lead to slow digestive transit which contributes more to the loss of these microbes in the large bowl. In the fullness of time this can lead to vitamin and mineral deficiencies as well as reduced digestive enzymes which we are supposed to make facilitating digestion more. This is probably the issue when you start having problems with gluten, casein (proteins) and the like when you have not had an issue previously.

I have read when the t3 level is correct for the specific woman she will be regular 28 days, light and most importantly for me Pain free. I'd really love that for everyone.

Coming at this postmenopausal, I would suggest, reading into yeast overgrowth because of the antibiotic use and doing searches on your other symptoms to discover supplements which will probably help. There are reputable medics on line giving out free information. One thyroid site give 300 symptoms many related to our reproductive circuitry. I would love for all of you to be able to loose the symptoms you have as well as avoiding the problems I've had joint pain, fatigue, digestive problems including food intolerances, which break down into both salicylate and Histamine intolerances which led me into chemical sensitivity. I had a surgical end to my menopause for endometrial cancer. I believe I could have been saved form most if not all of that, had my symptoms been taken more seriously.

STTM, Hypothyroidmom, Thyroid UK. and different online functional doctors. Read all you can I learned my doctors did not know everything.

daneejela

@Fuzzipeg thank you for sharing all those info. You seam like a person with lots of knowledge...did you maybe come across anything meaningful that was investigating relationship between male hormones and proteins?
I know proteins are great for many things, including weight loss...but somewhere I have read one research where they concluded that proteins raise IGF-1, and lower SGBH, which then causes male hormones to go up. I don't know if that is truth, since I only found that one research claiming that. But, when I look how my grandmother lived and those ancestors before, they had very little animal proteins (occasionally) in their diet and they don't remember many women had pcos symptoms.

blessybuva

Hey guys

Fellow PCOS sufferer here. Newly diagnosed. Thanks for sharing all your knowledge, I really appreciate it!
Heres my two cents. It's not much and is mostly my own experience but maybe there's someone who can relate to my story and we could help each other out.

I have been trying to lose my last bit of weight unsuccessfully for over a year now. I am in the normal body weight range and I managed to pack on quite a bit of muscle and I now want to reveal them. Problem is, the leftover 15 or so pounds are refusing to go anywhere!!
I've been going to the gym for years now and although I'm not a qualified nutritionist or anything like that I have a fair bit of knowledge about dieting, nutrition and cutting, bulking etc. At the start of 2017, I made a firm decision to stick to my diet/macros no matter what, and was extremely determined to finally see the results I was so desperate for. I was eating around 1800 calories per day, most of them coming from fat and protein and with only a small amount of carbs. I exercised 5 days a week, concentrating on strength training and adding cardio to the mix. Again, I packed on quite a bit of muscle but the fat just stayed even though I was in a constant deficit and stuck to the diet 100%. The single major improvement in how I feel in general was kicking out dairy and wheat out of my diet. Both gave me really bad bloat and made me feel funny. I thought it was just dairy at first but it turns out wheat is the main culprit!!
On top of the impossible weight loss, I have also noticed hair on my chin and hair loss on my scalp.

I have just started the pill about a week ago, which my GP prescribed. I am still waiting to see a specialist as the waiting list is very long. Has anyone ever experienced anything like this? Did anyone notice weight loss improvements after starting the pill? I'm getting desperate, the one thing that should make everyone lose weight doesn't work with me at all. Has anyone had this problem before?
My body loves packing on weight, be it fat or muscle. Which is good and bad at the same time I guess.

Thanks in advance fellow PCOS warriors

Candyb38

blessybuva wrote: »

Hey guys

Fellow PCOS sufferer here. Newly diagnosed. Thanks for sharing all your knowledge, I really appreciate it!
Heres my two cents. It's not much and is mostly my own experience but maybe there's someone who can relate to my story and we could help each other out.

I have been trying to lose my last bit of weight unsuccessfully for over a year now. I am in the normal body weight range and I managed to pack on quite a bit of muscle and I now want to reveal them. Problem is, the leftover 15 or so pounds are refusing to go anywhere!!
I've been going to the gym for years now and although I'm not a qualified nutritionist or anything like that I have a fair bit of knowledge about dieting, nutrition and cutting, bulking etc. At the start of 2017, I made a firm decision to stick to my diet/macros no matter what, and was extremely determined to finally see the results I was so desperate for. I was eating around 1800 calories per day, most of them coming from fat and protein and with only a small amount of carbs. I exercised 5 days a week, concentrating on strength training and adding cardio to the mix. Again, I packed on quite a bit of muscle but the fat just stayed even though I was in a constant deficit and stuck to the diet 100%. The single major improvement in how I feel in general was kicking out dairy and wheat out of my diet. Both gave me really bad bloat and made me feel funny. I thought it was just dairy at first but it turns out wheat is the main culprit!!
On top of the impossible weight loss, I have also noticed hair on my chin and hair loss on my scalp.

I have just started the pill about a week ago, which my GP prescribed. I am still waiting to see a specialist as the waiting list is very long. Has anyone ever experienced anything like this? Did anyone notice weight loss improvements after starting the pill? I'm getting desperate, the one thing that should make everyone lose weight doesn't work with me at all. Has anyone had this problem before?
My body loves packing on weight, be it fat or muscle. Which is good and bad at the same time I guess.

Thanks in advance fellow PCOS warriors

Just my experience but ketoconazole 2% prescribed by my dermatologist helped my hairloss. Its a shampoo. Im on spirinalactone for facial hair too soon to tell if it works. Congrats on the muscle! I still have 20 pds to lose. From what i understand about muscle building vs fat loss its one or the other at a time.Trying to lose weight you have to cut the calories. Building muscle eat more cals but also prepare for a small gain. Not an expert its just what ive read

Fuzzipeg

Sorry daneejlea, I've not looked down that train of thought. Oestrogen dominance is something I've come across, I think it is a question of not eliminating it. There are so many things which we are told are good for us including the contraceptive pill which stops the body being able to make its own cycles and imposes a synthetic one on any one who takes it. The female body is more complicated than the male one, many may choose not to have children but they are still living with the kit to produce them.

You could well be onto something with the historic protein levels. It is said women would forego better food, protein and things for the males who were the providers and their ability to provide was seen as more important. Though this would possibly fall down when agriculture is taken into consideration, women worked hard round the home. Lack of nutrition could have led to the historic mortality rates, and the rates child bed fever, not that this is a thing of the past. It can hit now, thankfully not often, and the only saving grace are the antibiotics.

erinlane93

I have PCOS and heavy lifting and low carb helped a lot for me! I used to do week days low carb and weekends higher. Carbs are the devil for me so this worked a lot!

daneejela

Yesterday I came across an interesting reading claiming that flaxseed consumption can lower the level of androgens. There has been a study on a single case (a women age 31) reporting significant reduction of androgen levels during 4 months of flaxseed consumption.
Obviously, studied group is very limited (1 person), but as usually, I feel encouraged to try it.

daneejela

Fuzzipeg wrote: »

Sorry daneejlea, I've not looked down that train of thought. Oestrogen dominance is something I've come across, I think it is a question of not eliminating it. There are so many things which we are told are good for us including the contraceptive pill which stops the body being able to make its own cycles and imposes a synthetic one on any one who takes it. The female body is more complicated than the male one, many may choose not to have children but they are still living with the kit to produce them.

You could well be onto something with the historic protein levels. It is said women would forego better food, protein and things for the males who were the providers and their ability to provide was seen as more important. Though this would possibly fall down when agriculture is taken into consideration, women worked hard round the home. Lack of nutrition could have led to the historic mortality rates, and the rates child bed fever, not that this is a thing of the past. It can hit now, thankfully not often, and the only saving grace are the antibiotics.

Agree totally on the contraceptive pill. I have been taking it at the age 17-22 and since then I decided to not go with it anymore. From that time I am constantly reading and searching for a cure, which mostly feels like a searching for a holy grail
I might be wrong, but I strongly believe that it's an environmental thing much more then genetical, since there is so much more of women with pcos symptoms nowadays.

FreyasRebirth

daneejela wrote: »

Yesterday I came across an interesting reading claiming that flaxseed consumption can lower the level of androgens. There has been a study on a single case (a women age 31) reporting significant reduction of androgen levels during 4 months of flaxseed consumption.
Obviously, studied group is very limited (1 person), but as usually, I feel encouraged to try it.

There is stuff on spearmint tea too.

Lgcoulter33

Hey all, I was diagnosed with pcos back in 2006. What I have learned is that even though it isn't curable it can be put into remission. Mine was in remission for almost five years and I was able to lose 120 pounds. However, my obgyn decided to put me on depo for birth control. It triggered the pcos again and I've been off it for almost a year. In that time I have gained back almost all the weight I had lost. So I did some research and discovered that gastric sleeve surgery, specifically gastric sleeve, can put it into remission again. I am on the first month of a managed weight loss plan to qualify for the surgery and right now I'm on adipex for the next few weeks. It's not just about putting it into remission though, it's also about changing my lifestyle and becoming healthy again.

animatorswearbras

Hi I was diagnosed by ultrasound at the beginning of the year, I probably have had it much longer but I believe the combined pill I was on was masking it and only discovered I had it when exploring reasons I was gaining weight so easily and my acne came back so bad at age 34 when I came off it (plus a couple of other symptoms). I'm now firmly in the "healthy" BMI range (22.7) and my periods have become a little more regular at 5 weeks apart (although light) but I was wondering if any acne sufferers got any breaks? I've been on roaccutane, antibiotics and topical creams but nothing has worked (or has made it worse) apart from the combined pill which I can't take anymore. Currently I take vitamins D3, K2 and zinc but still not much change, I also don't count carbs only calories. xxx Would love to hear if anyone has any advice?

Lgcoulter33

animatorswearbras wrote: »

Hi I was diagnosed by ultrasound at the beginning of the year, I probably have had it much longer but I believe the combined pill I was on was masking it and only discovered I had it when exploring reasons I was gaining weight so easily and my acne came back so bad at age 34 when I came off it (plus a couple of other symptoms). I'm now firmly in the "healthy" BMI range (22.7) and my periods have become a little more regular at 5 weeks apart (although light) but I was wondering if any acne sufferers got any breaks? I've been on roaccutane, antibiotics and topical creams but nothing has worked (or has made it worse) apart from the combined pill which I can't take anymore. Currently I take vitamins D3, K2 and zinc but still not much change, I also don't count carbs only calories. xxx Would love to hear if anyone has any advice?

The only thing that has stopped that is my birth control pill, and it still isn't gone all the way. I can only take the very very low dose though, as the higher dosage makes me bleed for weeks on end.

animatorswearbras

Lgcoulter33 wrote: »

animatorswearbras wrote: »

Hi I was diagnosed by ultrasound at the beginning of the year, I probably have had it much longer but I believe the combined pill I was on was masking it and only discovered I had it when exploring reasons I was gaining weight so easily and my acne came back so bad at age 34 when I came off it (plus a couple of other symptoms). I'm now firmly in the "healthy" BMI range (22.7) and my periods have become a little more regular at 5 weeks apart (although light) but I was wondering if any acne sufferers got any breaks? I've been on roaccutane, antibiotics and topical creams but nothing has worked (or has made it worse) apart from the combined pill which I can't take anymore. Currently I take vitamins D3, K2 and zinc but still not much change, I also don't count carbs only calories. xxx Would love to hear if anyone has any advice?

The only thing that has stopped that is my birth control pill, and it still isn't gone all the way. I can only take the very very low dose though, as the higher dosage makes me bleed for weeks on end.

Yeah same (although I can't remember the dose but it made everything run like clockwork), I still got break outs on the pill but a manageable amount and my chest and back totally cleared for the most part, now I've been off it for 19 months and it's back (although moderate rather than severe) I'm not allowed back on it because of my age and a couple of warning signs like migraines (also there's a few studies come out recently about how potentially dangerous the combined pill is, I was on Yasmin) I really was hoping that this particular symptom would sod off, and some people got it under control. lol

Lgcoulter33

animatorswearbras wrote: »

Lgcoulter33 wrote: »

animatorswearbras wrote: »

Hi I was diagnosed by ultrasound at the beginning of the year, I probably have had it much longer but I believe the combined pill I was on was masking it and only discovered I had it when exploring reasons I was gaining weight so easily and my acne came back so bad at age 34 when I came off it (plus a couple of other symptoms). I'm now firmly in the "healthy" BMI range (22.7) and my periods have become a little more regular at 5 weeks apart (although light) but I was wondering if any acne sufferers got any breaks? I've been on roaccutane, antibiotics and topical creams but nothing has worked (or has made it worse) apart from the combined pill which I can't take anymore. Currently I take vitamins D3, K2 and zinc but still not much change, I also don't count carbs only calories. xxx Would love to hear if anyone has any advice?

The only thing that has stopped that is my birth control pill, and it still isn't gone all the way. I can only take the very very low dose though, as the higher dosage makes me bleed for weeks on end.

Yeah same (although I can't remember the dose but it made everything run like clockwork), I still got break outs on the pill but a manageable amount and my chest and back totally cleared for the most part, now I've been off it for 19 months and it's back (although moderate rather than severe) I'm not allowed back on it because of my age and a couple of warning signs like migraines (also there's a few studies come out recently about how potentially dangerous the combined pill is, I was on Yasmin) I really was hoping that this particular symptom would sod off, and some people got it under control. lol

I was on yasmin for a while but had to be switched because I bled for 3 months straight on it. I was switched to aviane and it worked wonders and then my stupid ob said depo would be better for me and put me on that. All it did was undo all the hard work i had done. I had my primary care doctor put me on the pill a few months ago. He gave me mononessa which is a off brand of yasmin and I went back almost 3 months ago because I had my period for 23 days straight. So he switched me to lutera which I'm doing great on, except for the fact that I had to take uti meds for 10 days and it rendered it useless so now I'm on my period again for the second time this month. That sucks lol. But I'll be starting a new pack soon and I'll finally hopefully be back to the every 28 day for a day thing lol

bingo_007

My doc recommended to take the pill without a break to help stabilize the hormones. Maybe you can check if this could work for you too.