PCOS and the Facts

ddsb1111
ddsb1111 Posts: 885 Member
edited November 2023 in Health and Weight Loss
I was diagnosed with PCOS when I was a teenager (16 or 17 I believe). I didn’t know what that was or how to treat it. In fact, I only realized that was the diagnosis after reading the print out from the doctor that was given to my dad. It was never discussed with me and nothing changed in my daily routine.

I went to college, lost weight on my own, and apparently it was gone and I was healthy. If anything, I got comments like, you’re lucky you’re so thin, without realizing I had weight issues throughout my life. Fast forward 20+ years, gained weight again, and had to do it all over again.

If I had gone to the doctor they would have likely said I had PCOS again, but I didn’t get checked because I never got help in the first place. I’ve since lost the weight and I’m in good health.

I really want to understand this. I’ve read the insulin resistance description, and that it’s harder to lose weight. Is that all it is? Is there more to it? Is there proof of insulin resistance? How does it compare to pre diabetes?

And when isn’t weight loss hard? When I heard that it was So much HARDER to lose weight, it was the most defeating feeling ever (and the beginnings of my special snowflake syndrome). Ultimately, I didn’t think losing weight when I had PCOS was any harder necessarily because… losing weight is just hard, PERIOD. How would I know the different between really hard and really really hard? And why compare, if I need to lose the weight, that’s the only thing that should concern me. Not that it’s harder for me than someone else. That is counterproductive IMO. And no special diet for me was given, or ever followed when I lost weight. So where do these diets come from? If losing weight resolves it, why not just reduce calories in a practical way?

How do they quantify hard? Or harder?

How do they test for PCOS?

How different is PCOS than just being overweight?

How do they treat PCOS?

And, what caused PCOS?

I’ve read PCOS is from being overweight. Is this true? So, would they give this diagnosis to anyone overweight? I’m wondering if that’s what happened to me.

I’ve been so uniformed from something that affected me personally and that doesn’t sit well with me. If anyone has clear research please share. I want to feel like I understand what happened to me, why, and how it just disappeared when I lost weight- with no magic diet? What made me different than someone else who is overweight? Why was it harder for me than others? And how can they even quantify that?

Everytime a PCOS post comes up I want to ask all these questions but don’t want to derail the thread. And no matter what I read I don’t feel any closer to understanding because I just have more questions and no one to ask.

I wonder how many other people have gone through this and live in a state of confusion but were too embarrassed to ask. I met with a friend for lunch the other day who told me she was diagnosed with type 2 diabetes, doesn’t know what it means, what causes it, and what to do, so she’s going to ignore it. I was shocked. Then realized I did the same thing. Guess I should probably be the responsible person I hoped she would be and ask. Thanks for your input and for your patience on the questions I have coming, there’s quite a few.

Replies

  • neanderthin
    neanderthin Posts: 10,256 Member
    Are you saying your not sure if you have PCOS at the moment and your assuming you do because you've put on weight, is that your rationale? Do you have insulin resistance or diabetes?
  • Corina1143
    Corina1143 Posts: 3,772 Member
    edited December 2023
    https://www.niddk.nih.gov/health-information/diabetes/overview/what-is-diabetes/prediabetes-insulin-resistance#:~:text=Experts believe obesity, especially too,is linked to insulin resistance.

    https://my.clevelandclinic.org/health/diseases/8316-polycystic-ovary-syndrome-pcos

    I dont have, never have had PCOS, so i don't know anything about it.
    I have a friend who has it. She says when she gains weight she has more symptoms, when she loses weight her symptoms get better.
  • ddsb1111
    ddsb1111 Posts: 885 Member
    loulee997 wrote: »
    ddsb1111 wrote: »
    I was diagnosed with PCOS when I was a teenager (16 or 17 I believe). I didn’t know what that was or how to treat it. In fact, I only realized that was the diagnosis after reading the print out from the doctor that was given to my dad. It was never discussed with me and nothing changed in my daily routine.

    I went to college, lost weight on my own, and apparently it was gone and I was healthy. If anything, I got comments like, you’re lucky you’re so thin, without realizing I had weight issues throughout my life. Fast forward 20+ years, gained weight again, and had to do it all over again.

    If I had gone to the doctor they would have likely said I had PCOS again, but I didn’t get checked because I never got help in the first place. I’ve since lost the weight and I’m in good health.

    I really want to understand this. I’ve read the insulin resistance description, and that it’s harder to lose weight. Is that all it is? Is there more to it? Is there proof of insulin resistance? How does it compare to pre diabetes?

    And when isn’t weight loss hard? When I heard that it was So much HARDER to lose weight, it was the most defeating feeling ever (and the beginnings of my special snowflake syndrome). Ultimately, I didn’t think losing weight when I had PCOS was any harder necessarily because… losing weight is just hard, PERIOD. How would I know the different between really hard and really really hard? And why compare, if I need to lose the weight, that’s the only thing that should concern me. Not that it’s harder for me than someone else. That is counterproductive IMO. And no special diet for me was given, or ever followed when I lost weight. So where do these diets come from? If losing weight resolves it, why not just reduce calories in a practical way?

    How do they quantify hard? Or harder?

    How do they test for PCOS?

    How different is PCOS than just being overweight?

    How do they treat PCOS?

    And, what caused PCOS?

    I’ve read PCOS is from being overweight. Is this true? So, would they give this diagnosis to anyone overweight? I’m wondering if that’s what happened to me.

    I’ve been so uniformed from something that affected me personally and that doesn’t sit well with me. If anyone has clear research please share. I want to feel like I understand what happened to me, why, and how it just disappeared when I lost weight- with no magic diet? What made me different than someone else who is overweight? Why was it harder for me than others? And how can they even quantify that?

    Everytime a PCOS post comes up I want to ask all these questions but don’t want to derail the thread. And no matter what I read I don’t feel any closer to understanding because I just have more questions and no one to ask.

    I wonder how many other people have gone through this and live in a state of confusion but were too embarrassed to ask. I met with a friend for lunch the other day who told me she was diagnosed with type 2 diabetes, doesn’t know what it means, what causes it, and what to do, so she’s going to ignore it. I was shocked. Then realized I did the same thing. Guess I should probably be the responsible person I hoped she would be and ask. Thanks for your input and for your patience on the questions I have coming, there’s quite a few.

    Here are some answers to basic questions---I don't know if it will have enough detail for you--but maybe it will help.

    I researched when a friend had PCOS.

    Here is the basic info I found:

      MAYO CLINIC INFO ON DIAGNOSING

      [*] PCOS is caused by a hormone problem. It is not caused by being overweight.

      [*] With PCOS, your body produces high levels of a hormone called androgen. High levels of androgen interfere with ovulation. Eggs don't fully develop very often. Even when the eggs develop, they aren't always released. This hormone can also cause acne.

      [*] Often with PCOS, small sacs of fluid develop along the edges of the ovary. These sacs can fill with immature eggs. It can cause your ovaries to be enlarged and your ovaries may not work as they should.

      [*] PCOS can vary in severity. If you are obese, the symptoms of PCOS can be more severe. So PCOS isn't caused by obesity but may be aggravated by it.

      [*] Some people with PCOS have heavy or long periods. Some people have little to no periods at all.
      [*] Although many people with PCOS have insulin resistance, not all do.

      [*] PCOS most often starts with puberty. It runs in families and may have a genetic link.

      [*] Infertility, weight gain, acne, thinning hair on your head, abnormal hair growth elsewhere, skin tags, dark skin spots, obesity, and cysts can ALL be symptoms of PCOS. Not all people with PCOS get all of these symptoms.

      [*] Many people have no outward symptoms of PCOS until they have trouble getting pregnant or start gaining weight without any reason or change in diet/exercise.

      [*] People with PCOS often have issues with inflammation.

      [*] Many people with PCOS will develop insulin resistance. IR is when your body stops reacting well to the insulin your body produces. Insulin reduces blood sugar. If your blood sugar is high, your body will produce more than more insulin trying to lower the amount of blood sugar. If your body has IR, the high blood sugar gets stored as fat. Higher weights tend to make IR worse. Losing weight can reduce or cure IR.

      [*] PCOS can be managed with diet/nutrition/exercise in some cases. Other times people use hormonal birth control, androgen-reducing meds, or Metformin to make your body react more sensitively to insulin--so there are options. Most often with PCOS, doctors treat the symptoms or issue--but don't always treat the underlying PCOS condition unless it impacts your life in some way.
      • PCOS can raise the risk of certain pregnancy complications. If you decide to get pregnant, you should make sure your doctor knows about your PCOS diagnosis.



      Lou

      Thank you Lou, this is a great start and nicely broken down. I didn’t know about the elevated androgen levels or the sacs especially. I also didn’t realize it was genetic. Thank you for posting!
    • ddsb1111
      ddsb1111 Posts: 885 Member
      Are you saying your not sure if you have PCOS at the moment and your assuming you do because you've put on weight, is that your rationale? Do you have insulin resistance or diabetes?

      No, not saying any of those things actually. I’m just asking if anyone had a way of breaking down what PCOS is, know of any research or studies they recommend, and I think I went off with 50 other questions I had. Which, I do apologize for, it became Freewriting there for a moment.
    • ddsb1111
      ddsb1111 Posts: 885 Member
      edited December 2023
      Corina1143 wrote: »
      https://www.niddk.nih.gov/health-information/diabetes/overview/what-is-diabetes/prediabetes-insulin-resistance#:~:text=Experts believe obesity, especially too,is linked to insulin resistance.

      https://my.clevelandclinic.org/health/diseases/8316-polycystic-ovary-syndrome-pcos

      I dont have, never have had PCOS, so i don't know anything about it.
      I have a friend who has it. She says when she gains weight she has more symptoms, when she loses weight her symptoms get better.

      Hi Corina, thanks for the links. This is what jumps out at me and lead me to believe being overweight caused/causes PCOS:

      Experts believe obesity, especially too much fat in the abdomen and around the organs, called visceral fat, is a main cause of insulin resistance.

      Researchers used to think that fat tissue was only for energy storage. However, studies have shown that belly fat makes hormones and other substances that can contribute to chronic, or long-lasting, inflammation in the body. Inflammation may play a role in insulin resistance, type 2 diabetes, and cardiovascular disease.


      So, if we aren’t over fat we won’t develop the hormonal imbalance, the insulin resistance, or the inflammation? It seems like there’s more to it, isn’t there? (General question :) )

      Second link states
      The exact cause of PCOS is unknown. There’s evidence that genetics play a role. Several other factors, most importantly obesity, also play a role in causing PCOS

      So, those with insulin resistance are more likely to get PCOS. Insulin resistance and a hormonal imbalance, such as the release of more androgens, can be caused by too much fat around the organs, and creates inflammation. But, genetics can play a role, obesity can play a role, and insulin can play a role. It’s like a carousel.
    • ddsb1111
      ddsb1111 Posts: 885 Member
      For those with the rare form of Lean PCOS, I found this on PubMed. Might be helpful for some of you-

      The literature with evidence on lean PCOS is of low to moderate quality and there are still some uncertainties in the evidence base.

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6405408/#:~:text=Although a majority of cases,are termed as lean PCOS.
    • loulee997
      loulee997 Posts: 273 Member
      edited December 2023
      ddsb1111 wrote: »
      Corina1143 wrote: »
      https://www.niddk.nih.gov/health-information/diabetes/overview/what-is-diabetes/prediabetes-insulin-resistance#:~:text=Experts believe obesity, especially too,is linked to insulin resistance.

      https://my.clevelandclinic.org/health/diseases/8316-polycystic-ovary-syndrome-pcos

      I dont have, never have had PCOS, so i don't know anything about it.
      I have a friend who has it. She says when she gains weight she has more symptoms, when she loses weight her symptoms get better.

      Hi Corina, thanks for the links. This is what jumps out at me and lead me to believe being overweight caused/causes PCOS:

      Experts believe obesity, especially too much fat in the abdomen and around the organs, called visceral fat, is a main cause of insulin resistance.

      Researchers used to think that fat tissue was only for energy storage. However, studies have shown that belly fat makes hormones and other substances that can contribute to chronic, or long-lasting, inflammation in the body. Inflammation may play a role in insulin resistance, type 2 diabetes, and cardiovascular disease.


      So, if we aren’t over fat we won’t develop the hormonal imbalance, the insulin resistance, or the inflammation? It seems like there’s more to it, isn’t there? (General question :) )

      Second link states
      The exact cause of PCOS is unknown. There’s evidence that genetics play a role. Several other factors, most importantly obesity, also play a role in causing PCOS

      So, those with insulin resistance are more likely to get PCOS. Insulin resistance and a hormonal imbalance, such as the release of more androgens, can be caused by too much fat around the organs, and creates inflammation. But, genetics can play a role, obesity can play a role, and insulin can play a role. It’s like a carousel.

      I think you might be crossing Insulin resistance with PCOS. They are related, but not the same thing.
      IR causes a build up of blood sugar. The blood sugar build is often stored in fat around the middle/obesity. IR can cause weight gain. Losing weight can help control IR.

      PCOS often occurs with Insulin Resistance but having PCOS does not automatically mean you have IR.
      Or vice-versa. High probability but not absolute. Both are hormone related issues and an imbalance in one, can sometimes aggravate or flare the other.

      If you have a hormone issue that impacts PCOS (androgen), being overweight will normally cause the symptoms to be much worse. Many people who become obese then get diagnosed with PCOS, because the weight gain caused the hormone issues to worsen. The symptoms get worse so people go to the doctor. --The foundation of PCOS was probably already there--but the weight gain made it noticeable. More of a linked relationship than a cause-effect.
    • definingnadine
      definingnadine Posts: 3 Member
      I have PCOS and so do my sister and my aunts. My mother does not have it. I got it genetically from my dad. I was never overweight until I moved out of my parents in my 20s and got an office job, making me less active.

      I've always had acne, thick, dark body hair, and hyperpigmentation problems. Until I went on birth control, I had heavy periods, but they were consistent. Once I got on birth control, paired with weight gain from a new office job lifestyle, my PCOS symptoms were worse. I got off of birth control after six months because I was able to compare what changes it did to my body, and felt I was better without it.
      I got blood work done to help determine what some of my issues are. I used Modern Fertility (I think I can send you a link for a discount. They are also payable by FSA/HSA). I had an excess of testosterone, but thankfully, my thyroid and lymph nodes were okay. My sister does not have the weight loss problems I have, but she gets ovarian cysts. She's found that birth control helps her, so I think she has an excess of estrogen.

      It impacts all of your life and your health. PCOS makes you more prone to diabetes, your blood sugar and how you process foods. It makes you more prone to anxiety, depression, mood swings, hair thinning, and even alters your hair texture. With your hormones amuck, it can cause inflammatory issues, causing you to develop intestinal problems like IBS or an intolerance or allergy you didn't have previously. I used to drink milk like a cow, now I have a pop several lactaids, or just go dairy-free.

      It has been a journey.
    • neanderthin
      neanderthin Posts: 10,256 Member
      edited December 2023
      ddsb1111 wrote: »
      Corina1143 wrote: »
      https://www.niddk.nih.gov/health-information/diabetes/overview/what-is-diabetes/prediabetes-insulin-resistance#:~:text=Experts believe obesity, especially too,is linked to insulin resistance.

      https://my.clevelandclinic.org/health/diseases/8316-polycystic-ovary-syndrome-pcos

      I dont have, never have had PCOS, so i don't know anything about it.
      I have a friend who has it. She says when she gains weight she has more symptoms, when she loses weight her symptoms get better.

      Hi Corina, thanks for the links. This is what jumps out at me and lead me to believe being overweight caused/causes PCOS:

      Experts believe obesity, especially too much fat in the abdomen and around the organs, called visceral fat, is a main cause of insulin resistance.

      Researchers used to think that fat tissue was only for energy storage. However, studies have shown that belly fat makes hormones and other substances that can contribute to chronic, or long-lasting, inflammation in the body. Inflammation may play a role in insulin resistance, type 2 diabetes, and cardiovascular disease.


      So, if we aren’t over fat we won’t develop the hormonal imbalance, the insulin resistance, or the inflammation? It seems like there’s more to it, isn’t there? (General question :) )

      Second link states
      The exact cause of PCOS is unknown. There’s evidence that genetics play a role. Several other factors, most importantly obesity, also play a role in causing PCOS

      So, those with insulin resistance are more likely to get PCOS. Insulin resistance and a hormonal imbalance, such as the release of more androgens, can be caused by too much fat around the organs, and creates inflammation. But, genetics can play a role, obesity can play a role, and insulin can play a role. It’s like a carousel.

      I did research on this a while back to help friend and believe there needs to be a distinction here between PCOS from genetic and hereditary traits and dysfunction and Insulin resistant PCOS.

      One form of PCOS is basically from birth, most likely inherited from the mother. One type is called congenital adrenal hyperplasia (CAH) there's a couple of classifications but generally these aren't detected until later in childhood or adolescence with the other pretty much detected from birth, which is more rare. Some women will have abnormalities in the genitalia, thinning hair, a deeper voice that kind of thing caused by the over producing androgens, which is basically testosterone. Another enabler is called luteinizing hormone (LH) and it produced in the brain from the pituitary gland and is involved in ovulation, progesterone production, testosterone production, basically it messes with the reproductive system and stimulates the adrenals. Other genetic factors of androgen production are the adrenal glands and the actual ovaries, which both can overproduce androgens and insulin is also connected with the adrenals, which seem interesting the adrenals keep coming up, anyway. Most of these are medicated using birth control, metformin and androgen reducing drugs simply because they don't know of another way, and it's still the normal pathology, or at least the last time I did any deep research on this.


      Anyway, PCOS as it relates to insulin.

      Like it been stated, obesity doesn't cause PCOS but around 70% of women that have PCOS are overweight or obese. The connection or the effective mechanism is elevated insulin levels and not to be confused with elevated blood sugar, these are two totally different things. If a person is basically consuming what would be described as a Standard American Diet, which is fairly high in refined carbohydrates and sugar then pancreatic insulin production is cranking out a lot of insulin every day for years and it's this chronic elevated production that contributes to the mechanism of PCOS. The likelihood that that same person will put on weight is almost a given based on the magnitude of studies that confirm this and over the course of elevated insulin production will and does cause dysfunction of cellular insulin receptors and more insulin will be needed to keep blood glucose at base line. Of course if a person has some genetic form of PCOS then IR will definitely exasperate the condition, no doubt about that.

      So, when we consume carbs and sugar they're in basically 2 forms, one being glucose that is used for immediate energy (ATP) for most cells in the body, especially our muscle, and our brain. The other sugar molecule is fructose which actually doesn't effect insulin at all and isn't used as ATP and gets metabolized by the liver.

      This is where things go sideways. Visceral fat, the metabolically active fat, is exclusively produced from fructose metabolism in the liver and the liver stores these sugars as triglycerides and released as VLDL lipoproteins. On of the first signs of excess fructose metabolism is fatty liver, which is now quite common among children. Visceral fat is also very inflammatory and why that association exists, and the host of other metabolic disorders like IR, diabetes, hypertension, heart disease, obesity and PCOS. As it relates to PCOS is, insulin increases the sensitivity of the adrenal cortex that activates adrenocorticotropic hormones that increase and pump out androgen which also mucks with the menstrual cycle and that's basically the pathogenic route it takes. Also people that are of normal weight can still have been pumping out too much insulin and have insulin resistance and/or diabetes, and could also have PCOS, it's actually quite a large minority. This is all from my notes of a few years ago and of course just my opinion as well.
    • ddsb1111
      ddsb1111 Posts: 885 Member
      Each of you wrote incredibly insightful responses, thank you. No wonder I was confused, I was missing the biggest pieces of the puzzle. I had no idea how complex and complicated PCOS is, or can be, and I’m surprised I wasn’t informed when I was diagnosed as a teen. Especially considering all the potential symptoms. Anyway, I appreciate your responses, they really have been helpful.
    • kshama2001
      kshama2001 Posts: 28,052 Member
      Re: being harder to lose weight with PCOS - my understanding from reading these forums is that women with PCOS may have a lower BMR and need a lower baseline of calories. So if the system tells you to eat X to lose a pound a week, you actually need X - 250 (for example.) It seems hard because the base calories are wrong for you. Once you get that dialed in, it's simpler (but not necessarily easy :wink: )

      There are a few women here who need higher baseline of calories. Ann is one. @springlering62 do you think you are an unusually efficient calorie burner like Ann or you lost weight faster than expected and had to increase your calories several times because you became super active?

      If I were a woman with PCOS and a lower BMR / not losing weight on the expected amount of calories, I would compensate by exercising more and not logging it.

      But women also have to be careful to not be this person:

      http://www.bodyrecomposition.com/research-review/dietary-restraint-and-cortisol-levels-research-review.html/

      ...a group of women who scored higher on dietary restraint scores showed elevated baseline cortisol levels. By itself this might not be problematic, but as often as not, these types of dieters are drawn to extreme approaches to dieting.

      They throw in a lot of intense exercise, try to cut calories very hard (and this often backfires if disinhibition is high; when these folks break they break) and cortisol levels go through the roof. That often causes cortisol mediated water retention (there are other mechanisms for this, mind you, leptin actually inhibits cortisol release and as it drops on a diet, cortisol levels go up further). Weight and fat loss appear to have stopped or at least slowed significantly. This is compounded even further in female dieters due to the vagaries of their menstrual cycle where water balance is changing enormously week to week anyhow.

      And invariably, this type of psychology responds to the stall by going even harder. They attempt to cut calories harder, they start doing more activity. The cycle continues and gets worse. Harder dieting means more cortisol means more water retention means more dieting. Which backfires (other problems come in the long-term with this approach but you’ll have to wait for the book to read about that).

      When what they should do is take a day or two off (even one day off from training, at least in men, lets cortisol drop significantly). Raise calories, especially from carbohydrates. This helps cortisol to drop. More than that they need to find a way to freaking chill out. Meditation, yoga, get a massage... Get in the bath, candles, a little Enya, a glass of wine, have some you-time but please just chill.
    • neanderthin
      neanderthin Posts: 10,256 Member
      Basal metabolic rate in women with PCOS compared to eumenorrheic controls

      https://onlinelibrary.wiley.com/doi/abs/10.1111/cen.12740


      Conclusions

      After adjusting for age and BMI, there was no difference in BMR between PCOS women and controls. BMR was also comparable in a secondary analysis comparing PCOS women with and without insulin resistance.


      Of course this is only one study, but it's appears difficult to separate PCOS without IR, which this one did. Couldn't find the full study either. I couldn't imagine it's easy for anyone that has IR, PCOS, obesity and other related medical problems where losing weight wouldn't feel daunting.
    • loulee997
      loulee997 Posts: 273 Member
      kshama2001 wrote: »
      Meditation, yoga, get a massage... Get in the bath, candles, a little Enya, a glass of wine, have some you-time but please just chill.

      Unless you are neuro-spicy like me and all of those things make my skin crawl and set off anxiety.
      Blasting song on repeat, long dog walk, and a hyper fixation on a word puzzle does it for me--most of the time.

      :) Just in case --'regular relaxation tools' make you more anxiety-ridden like me.

      A little relaxation never hurts anyone. Just our relaxation tools may vary.
    • Corina1143
      Corina1143 Posts: 3,772 Member
      I was doing research on cancer, not PCOS, but found suggestions that there's a circle of high estrogen causing you to gain weight more easily, fat produces estrogen, estrogen makes easier weight gain, etc.
      You have to stop and reverse the cycle. Suggested the way to do that is to lose the weight, and yes, it is a little harder because of the extra estrogen.
      From what my friend told me about PCOS, it sounded very similar.
      All this is over my head, but I keep trying to understand, too.
    • ddsb1111
      ddsb1111 Posts: 885 Member
      edited December 2023
      my understanding from reading these forums is that women with PCOS may have a lower BMR and need a lower baseline of calories. So if the system tells you to eat X to lose a pound a week, you actually need X - 250 (for example.) It seems hard because the base calories are wrong for you. Once you get that dialed in, it's simpler (but not necessarily easy )

      I keep seeing this in the threads too, and after everything I’ve read it seems fair to feel that losing is harder. But I can’t seem to find any current research. I don’t know why, I just want to see it. I used my own data as a baseline so I had no one to compare myself to but me so it definitely felt simpler. Not easy, but simpler.

      When what they should do is take a day or two off (even one day off from training, at least in men, lets cortisol drop significantly). Raise calories, especially from carbohydrates. This helps cortisol to drop. More than that they need to find a way to freaking chill out. Meditation, yoga, get a massage... Get in the bath, candles, a little Enya, a glass of wine, have some you-time but please just chill.

      Couldn’t agree more. Like anyone else who grew up in the 80’s-90’s, we jumped from extreme diet trend to extreme diet trend, meanwhile binging between the next best thing. It sucked. The likely answer all along was pick one, choose a reasonable rate of loss, and sail away 😆 (sorry, had to).

      After adjusting for age and BMI, there was no difference in BMR between PCOS women and controls. BMR was also comparable in a secondary analysis comparing PCOS women with and without insulin resistance.

      I read this too! It was quite awhile ago now, and part of why I was confused on the facts. You can read that it’s harder all day long but I want them to show me how they know. Then a couple small studies like this pops up and you start to reconsider what you think you know or believe to be true. With the amount of women diagnosed with PCOS we should be investigating this further.

      Unless you are neuro-spicy like me
      I’m stealing this.

      I was doing research on cancer, not PCOS, but found suggestions that there's a circle of high estrogen causing you to gain weight more easily, fat produces estrogen, estrogen makes easier weight gain, etc.

      One of the links above stated that testosterone can contribute to weight gain. I’ll have to find and quote it because I was a little surprised by that, maybe I misread. Let me check. I’m more familiar with estrogen promoting fat storage, for obvious reasons. It’s still over my head too, but it’s clearer than before.
    • springlering62
      springlering62 Posts: 8,645 Member
      kshama2001 wrote: »

      There are a few women here who need higher baseline of calories. Ann is one. @springlering62 do you think you are an unusually efficient calorie burner like Ann or you lost weight faster than expected and had to increase your calories several times because you became super active?

      For the record, I don’t have PCOS, one of my daughters does, though.

      At one time early in MFP, I calculated the calories I was eating on a normal, pre-MFP day. They were in the 10-12,000 calorie range and that’s not an exaggeration. In a single day I’d have donuts, family sized bag of chips or Doritos, bags(yep, plural, and family sized) of M&Ms or Cadburys, an entire package or two of Little Debbie’s or Geneva Cookies, and a pie or most of a container of Breyers, plus umpteen cokes and a large fast food lunch and whatever I made for dinner. I should have been morbidly obese, but the biggest I ever got was 225, and I am very very grateful for that.

      I think it’s a combination of a lot of NEAT activity, and increased exercise. Even when obese, I always had a lot of nervous energy to burn. I walk fast, always play with my rings, wave my hands a lot, and rock from foot to foot.

      But I also became extremely active with weight loss. Even when “resting” like the past few days for a minor injury, I still shoot for high calorie burn, just via more “relaxed” workouts like recumbent bike, aquafit, Pilates, walking, etc. rather than cardio, gym, power yoga.

      I just like being in motion. Even when sitting, I’m doing needlework, unless I’m faffing around on MFP, of course. 👍🏻

      Don’t know what that has to do with PCOS but there ya go. 🤷🏻‍♀️

      Interesting about the dark body hair and hyperpigmentation. That’s me. I shaved every inch of my body below the neck after being teased about it in third grade. Mom was horrified. That was the days of bladed razors and the tub looked like a crime scene. 😂

    • AnnPT77
      AnnPT77 Posts: 34,571 Member
      edited December 2023
      ddsb1111 wrote: »
      my understanding from reading these forums is that women with PCOS may have a lower BMR and need a lower baseline of calories. So if the system tells you to eat X to lose a pound a week, you actually need X - 250 (for example.) It seems hard because the base calories are wrong for you. Once you get that dialed in, it's simpler (but not necessarily easy )

      I keep seeing this in the threads too, and after everything I’ve read it seems fair to feel that losing is harder. But I can’t seem to find any current research. I don’t know why, I just want to see it. I used my own data as a baseline so I had no one to compare myself to but me so it definitely felt simpler. Not easy, but simpler.

      When what they should do is take a day or two off (even one day off from training, at least in men, lets cortisol drop significantly). Raise calories, especially from carbohydrates. This helps cortisol to drop. More than that they need to find a way to freaking chill out. Meditation, yoga, get a massage... Get in the bath, candles, a little Enya, a glass of wine, have some you-time but please just chill.

      Couldn’t agree more. Like anyone else who grew up in the 80’s-90’s, we jumped from extreme diet trend to extreme diet trend, meanwhile binging between the next best thing. It sucked. The likely answer all along was pick one, choose a reasonable rate of loss, and sail away 😆 (sorry, had to).

      After adjusting for age and BMI, there was no difference in BMR between PCOS women and controls. BMR was also comparable in a secondary analysis comparing PCOS women with and without insulin resistance.

      I read this too! It was quite awhile ago now, and part of why I was confused on the facts. You can read that it’s harder all day long but I want them to show me how they know. Then a couple small studies like this pops up and you start to reconsider what you think you know or believe to be true. With the amount of women diagnosed with PCOS we should be investigating this further.
      Keep in mind that that specific study looked at BMI.

      Health conditions IMU largely affect body weight through metabolic effects (which would show up in BMI), fatigue, appetite, water retention. If - pure speculation for example purposes - PCOS suppresses energy level thus suppresses NEAT, that could result in the average woman with PCOS needing a lower goal for any given body weight outcome.

      Also, buried in the "average woman" concept is variation around the mean. Variation around the mean applies to population averages (the average of pretty much everyone), and it also applies to symptoms or side effects of health conditions. If (again making up numbers) the average woman with PCOS requires 250 calories fewer daily than the average general population woman, that doesn't mean every woman with PCOS requires fewer calories than the average woman. It's about probabilities, not "for sure gonna".
      (snip)

      I was doing research on cancer, not PCOS, but found suggestions that there's a circle of high estrogen causing you to gain weight more easily, fat produces estrogen, estrogen makes easier weight gain, etc.

      One of the links above stated that testosterone can contribute to weight gain. I’ll have to find and quote it because I was a little surprised by that, maybe I misread. Let me check. I’m more familiar with estrogen promoting fat storage, for obvious reasons. It’s still over my head too, but it’s clearer than before.

      I wonder if testosterone contributes to weight gain by making it easier to gain muscle mass?

      I also wonder why anti-estrogen drugs (of a couple of different mechanisms of action) are associated with a side effect of weight gain, if estrogen contributes to weight gain? (I know that weight gain can increase estrogen levels.)
      kshama2001 wrote: »
      (snip)

      There are a few women here who need higher baseline of calories. Ann is one. @springlering62 do you think you are an unusually efficient calorie burner like Ann or you lost weight faster than expected and had to increase your calories several times because you became super active?
      In my case, I suspect a good piece of the difference is having more muscle mass than average for my age/size. I'm no bodybuilder, but as far as I can figure out, the average woman my age/size would be expected (per statistics) to have body fat around 36% (estimated from BMI), whereas I think mine (from multiple estimating methods) is somewhere in the mid-20s. When I run a TDEE calculator that will take BF% estimate into account, I get a TDEE estimate that's closer to realistic.

      I don't have PCOS, but I do have other factors that some here say make weight loss extra hard: Severe hypothyroidism (treated), menopausal status, older age (68). I long assumed that I had a "slow metabolism" because of things like that, and because I was athletically active, "eating healthy", and still staying seriously over-fat. Turned out that was not so. :D

      I'm not saying that no one has factors that make things difficult. Honestly, I think it can be difficult for anyone and everyone, for a variety of reasons - but sure, more difficult for some than others. In one sense, if I'm that person . . . so what? I am who I am, and that's the raw material I have to work with. I think it's possible to get psychologically bogged down in "it's so hard because X". If so, that's not remotely helpful.

      The challenge is to stay in the "what can I effectively do about this, and still achieve my goals" mindset, I think: Problem-solving, not catastrophizing.

      I'd point back at the "variation around the mean" idea, too: If some situation (PCOS, hypothyroid, whatever) does have a "calorie burn penalty", the degree is likely to vary among individuals. The standard "follow the recommended calories for 4-6 weeks" experiment will sort out the actuality pretty well. Worrying about the statistical average doesn't improve the situation.
      If I were a woman with PCOS and a lower BMR / not losing weight on the expected amount of calories, I would compensate by exercising more and not logging it.

      (snip)

      If it were me, I'd run that 4-6 week (whole menstrual cycle) experiment, and estimate my actual calorie needs if I could. That's pretty much what I did do, when it became obvious that my calorie needs were higher than MFP estimated. To me, one of the benefits of the MFP method (adding exercise calories separately) is the ease of adjusting when exercise load changes. Adjusting by doing unlogged exercise doesn't really help during times when, say, one can't exercise because of illness or surgical recovery or something.

      Just my opinion, though.

    • ddsb1111
      ddsb1111 Posts: 885 Member
      edited December 2023
      kshama2001 wrote: »

      There are a few women here who need higher baseline of calories. Ann is one. @springlering62 do you think you are an unusually efficient calorie burner like Ann or you lost weight faster than expected and had to increase your calories several times because you became super active?

      For the record, I don’t have PCOS, one of my daughters does, though.

      At one time early in MFP, I calculated the calories I was eating on a normal, pre-MFP day. They were in the 10-12,000 calorie range and that’s not an exaggeration. In a single day I’d have donuts, family sized bag of chips or Doritos, bags(yep, plural, and family sized) of M&Ms or Cadburys, an entire package or two of Little Debbie’s or Geneva Cookies, and a pie or most of a container of Breyers, plus umpteen cokes and a large fast food lunch and whatever I made for dinner. I should have been morbidly obese, but the biggest I ever got was 225, and I am very very grateful for that.

      I think it’s a combination of a lot of NEAT activity, and increased exercise. Even when obese, I always had a lot of nervous energy to burn. I walk fast, always play with my rings, wave my hands a lot, and rock from foot to foot.

      But I also became extremely active with weight loss. Even when “resting” like the past few days for a minor injury, I still shoot for high calorie burn, just via more “relaxed” workouts like recumbent bike, aquafit, Pilates, walking, etc. rather than cardio, gym, power yoga.

      I just like being in motion. Even when sitting, I’m doing needlework, unless I’m faffing around on MFP, of course. 👍🏻

      Don’t know what that has to do with PCOS but there ya go. 🤷🏻‍♀️

      Interesting about the dark body hair and hyperpigmentation. That’s me. I shaved every inch of my body below the neck after being teased about it in third grade. Mom was horrified. That was the days of bladed razors and the tub looked like a crime scene. 😂

      I can’t hold still either. It’s impressive how many calories we can burn being fidgety. I noticed when I workout I burn less calories because of how much it reduced my NEAT. Currently trying to increase my fitness while maintaining my neat, but it’s been challenging. On the plus side, I’ve noticed it’s a lot easier and more fun not carrying the extra weight around. I figure, as long as I’m having fun and managing my weight, those habits will build and I’ll see the benefits eventually.

      Side note- I’ve seen you describe your diet previously, and both times I’ve been shocked… for two reasons: How the heck did you NOT get sick? And also, how much did you spend a month! It sounds expensive. I joke, but you’re an inspiration, and I always enjoy when you post.
    • ddsb1111
      ddsb1111 Posts: 885 Member
      edited December 2023
      If it were me, I'd run that 4-6 week (whole menstrual cycle) experiment, and estimate my actual calorie needs if I could. That's pretty much what I did do, when it became obvious that my calorie needs were higher than MFP estimated.

      That’s what I did. It’s less defeating this way than hearing it will be harder for me than others. Like you said, so what? I want solutions, not problems lol. It’s no different than what any one of us has to do since we all have different burn rates and activity levels. I think the calorie estimate from MFP is a decent launching pad to start the trend.

      And I want to echo again, never underestimate the power of your NEAT. PCOS sufferers especially. I consider it my 3rd and preferred option in keeping my available calories as high as possible. At least until I get a lot better at tennis. I look like someone- who’s making fun of someone- who sucks at tennis, but it’s a good time.
    • springlering62
      springlering62 Posts: 8,645 Member
      ddsb1111 wrote: »
      kshama2001 wrote: »

      There are a few women here who need higher baseline of calories. Ann is one. @springlering62 do you think you are an unusually efficient calorie burner like Ann or you lost weight faster than expected and had to increase your calories several times because you became super active?

      For the record, I don’t have PCOS, one of my daughters does, though.

      At one time early in MFP, I calculated the calories I was eating on a normal, pre-MFP day. They were in the 10-12,000 calorie range and that’s not an exaggeration. In a single day I’d have donuts, family sized bag of chips or Doritos, bags(yep, plural, and family sized) of M&Ms or Cadburys, an entire package or two of Little Debbie’s or Geneva Cookies, and a pie or most of a container of Breyers, plus umpteen cokes and a large fast food lunch and whatever I made for dinner. I should have been morbidly obese, but the biggest I ever got was 225, and I am very very grateful for that.

      I think it’s a combination of a lot of NEAT activity, and increased exercise. Even when obese, I always had a lot of nervous energy to burn. I walk fast, always play with my rings, wave my hands a lot, and rock from foot to foot.

      But I also became extremely active with weight loss. Even when “resting” like the past few days for a minor injury, I still shoot for high calorie burn, just via more “relaxed” workouts like recumbent bike, aquafit, Pilates, walking, etc. rather than cardio, gym, power yoga.

      I just like being in motion. Even when sitting, I’m doing needlework, unless I’m faffing around on MFP, of course. 👍🏻

      Don’t know what that has to do with PCOS but there ya go. 🤷🏻‍♀️

      Interesting about the dark body hair and hyperpigmentation. That’s me. I shaved every inch of my body below the neck after being teased about it in third grade. Mom was horrified. That was the days of bladed razors and the tub looked like a crime scene. 😂

      Side note- I’ve seen you describe your diet previously, and both times I’ve been shocked… for two reasons: How the heck did you NOT get sick? And also, how much did you spend a month! It sounds expensive. I joke, but you’re an inspiration, and I always enjoy when you post.

      I would stop at the store on my way to work on the pretense of picking up “breakfast”, but really to buy two or three grocery bags of junk to get me through the day.

      I’ve always balanced the checkbook. My husband didn’t have a clue. I was very careful not to leave wrappers, or other evidence in my car.

      My wonderful husband encouraged me to walk away from the super stressful family business that started me on the path to stress-gluttony. I am at a complete loss why I wasn’t several hundred pounds heavier by the time I did.

      IMHO, there’s a fair case to be made that stress burns calories as well as creating them. 🤷🏻‍♀️

      The $15 or $20 a day I spent surreptitiously on the side now goes on bulk purchases of Nugo bars, canisters of Naked products, balsamic vinegars, the Belgian meringues I’m addicted to, etc etc. I innocently thought eating “better” would be cheaper, especially since I eat less. Nope. Not cheaper, just differenter.

      I now return this channel to PCOS.
    • neanderthin
      neanderthin Posts: 10,256 Member
      edited December 2023
      I also looked at diets for my friend that had PCOS. It was pretty easy to see that most sources basically came down to reducing ultra processed foods like refined carbs and sugar which makes sense considering it's insulin that interferes with the hormones of the adrenal glands that then pump out androgens which is basically the pathology of PCOS, which is common sense really.

      Of course any diet is only good if it can be adhered to so it's important to put priorities in an order that works for the individual and in saying that, there is no one diet that could be considered the best diet, even though the Ketogenic diet shows the best results but is difficult to adhere to, as an example of what I'm saying.

      The basic algorithm is showing diets like the Mediterranean diet, low GI diet, Dash diet, pulse based diet, low carb diet, and the ketogenic diet. all of these remove UPF. For some reason the vegetarian diet had mixed reviews and suspect that that diet can still be high in refined carbs, sugar and UPF, so I suspect that's why I didn't see much.

      Not to mention weight losses and exercise and the effects on insulin levels and storage protocols which does improve our insulin sensitivity, which basically facilitates the same metabolic result as reducing UPF, basically.

      I have exhaustive notes on this but just thought I'd just get this out there for people that might find it helpful. :)