Things about PCOS You Wish Others Understood/Are Tired of Explaining - Ongoing List!

KnitOrMiss
KnitOrMiss Posts: 10,103 Member
edited November 14 in Social Groups
Yesterday, we saw a post on "10 Things Women with PCOS are Tired of Explaining." Some of us thought we might start our own list.

1. Everyone's PCOS is different. PCOS is a list of symptoms compiled. You may have one issue or a thousand on the list. Just because you have one thing does not dictate another. Just because you don't have a major symptoms that plagues someone else does not mean your PCOS is lesser or non-existent. It is YOUR PCOS.

2. Just because you or someone you know got pregnant with no trouble while having PCOS does not mean that anyone having problems is doing something wrong. Just as everyone's PCOS is individualized, so is each person's health and related issues.

3. We share ideas in the hope that what we've suffered through and discovered may help someone else.

4. Anyone who has ever suffered through bursting cysts deserves a medal.

5. What is PCOS? I wish had a post card or a permanent cut and paste option for people who have no clue. Also, I wish doctors had an idea that once you have a second "female" problem in addition to one that might be unrelated, most ladies should be tested for things like PCOS. It copycats other conditions and goes undiagnosed for decades in many cases! Test for this first... Early treatment makes life so much better!

6. Prescriptions are not your only option. Most doctor's won't prescribe supplements for a number of reasons. And they jump to certain meds associated with the condition, often without proper testing, risking messing up one's body further.

7. Always get a copy of any testing done. Doctors often will exaggerate or misspeak about blood work when they don't know the syndrome.

8. Don't be afraid to research on your own and ask questions.

9. Get an endocrinologist. Unless your Gynecologist specializes in this condition/syndrome, s/he is unlikely to treat the entirety of it.

10. Do not be afraid to question your doctor, discuss with your doctor, or even fire your doctor. No one deserves to be ignored.

11. Just because my PCOS is currently managed does not mean I do not have to be diligent. The slightest thing can trigger more symptoms.

12. Everything is more complicated with PCOS. Traditional treatments don't always work or work without modifications. Don't assume things will work for everyone...

13. "I'm so sorry." "How can I help?" Etc. Anything that applies in times of grief applies when discussing any condition you don't understand.

Let's keep adding on. These are just a few that jumped out at me. I might need to break it into categories ala "Everything I need to know I learned in Kindergarten" and "Things I'm Tired of Explaining" categories or something. Feedback, modifications, suggestions welcome. If I get to a good "stopping point" I'm so going to print up a flash card to hand to people who ask...
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Replies

  • KnitOrMiss
    KnitOrMiss Posts: 10,103 Member
    14. Just because I am not experiencing success does not mean I am not trying or am only making excuses. Just as CICO does not work for most people, your plan/success may or may not work for me, with or without modifications. Don't assume we are the same...or judge me when I'm already fighting back with everything I am and have.
  • Dragonwolf
    Dragonwolf Posts: 5,600 Member
    15. Just because my current thing isn't resulting in me losing weight, it doesn't mean it's not successful. The fact that it's cleared my acne, given me sane periods, or simply made me stop gaining weight is a win for right now.

    16. Just because I'm not trying to get pregnant, it doesn't mean my PCOS is nothing to worry about. I'd prefer to not get diabetes/cancer/a heart attack, thanks.

    17. Glucose is not the end-all for monitoring insulin resistance and hyperinsulinemia. For the love of the old gods and the new, test insulin by default!
  • KnitOrMiss
    KnitOrMiss Posts: 10,103 Member
    Dragonwolf wrote: »
    15. Just because my current thing isn't resulting in me losing weight, it doesn't mean it's not successful. The fact that it's cleared my acne, given me sane periods, or simply made me stop gaining weight is a win for right now.

    16. Just because I'm not trying to get pregnant, it doesn't mean my PCOS is nothing to worry about. I'd prefer to not get diabetes/cancer/a heart attack, thanks.

    17. Glucose is not the end-all for monitoring insulin resistance and hyperinsulinemia. For the love of the old gods and the new, test insulin by default!

    NUMBER 16 - OMG - How much!!!!!!! I am 100% done having children, but I still suffer from PCOS, and I CANNOT have surgery to remove any lady parts to remove this risk due to outlying health issues..... I don't want to increase fertility, just quality of life ... and longevity... SO MUCH!!!
  • ohheythatgirl
    ohheythatgirl Posts: 34 Member
    18. Do not for the love of all that is good and holy, lose any of my multiple sets of tweezers. I need a tweezer at least 5x a day. Because I am hairy. (LOL).

    I realize that doesn't apply to every cyster, but to those of us who experience hirsutism... bless.
  • jaimekbee1219
    jaimekbee1219 Posts: 96 Member
    Omg! So many of these! I lost count of how many I relate to. I think the biggest for me (second to other women with PCOS have kids so obviously I won't have any trouble. Except I will.) is that so many people don't understand that different people have different symptoms.

    My closest girlfriend has it and she, like so many, can't have many carbs. We were discussing this and this guy who was present said "how can you have it? You don't react to carbs the way she does?" No, but I have to shave my neck and she doesn't. And after reading this board a billion times I believe carbs *are* my problem - just different then they are for her.

    Even professionals need this explained to them - my cousin-in-law had to find an endo that specializes in PCOS to get a diagnosis. Her doc didn't believe her because she's so thin.

    Also I super second the suggestion to find a GOOD doctor that understands PCOS. Mine is ok, but I should find an endo. She only put me on bcp (which I was already on to avoid babies before I'm ready) and told me to lose weight.

    Ok I'm done. Ha.

    Oh! And 19. I'm not just turning down sweets and other sugary goodness because I'm trying to lose some weight. I turn them down because I know my limit and if I go over that limit I get sick. Like physically-ill-can't-get-enough-water in me sick. I started limiting sugar about 8 years ago and I haven't had that problem since.
  • RHeger
    RHeger Posts: 19 Member
    edited March 2015
    19. "When are you going to try and have your next child?"

    I am so tired of being asked this! What people do not know, is that we have been trying for over a year, and after numerous miscarriages it may never happen. People assume you can pop out a kid on demand and if you don't its not meant to be.
    *End of rant*
  • Journeywithyou
    Journeywithyou Posts: 49 Member
    20. You must be lazy because you are overweight. If it was only that easy to exercise and the pounds melt off as it does for someone without PCOS.
  • MsBeverleyH
    MsBeverleyH Posts: 99 Member
    20. You must be lazy because you are overweight. If it was only that easy to exercise and the pounds melt off as it does for someone without PCOS.

    ^ That haunts me. Everyone assumes that I'm lazy and eat garbage, when in fact I count calories, weigh my food, exercise 30-90 minutes every day... My weight/inches are doing anything but "melting" or "falling" off. People need to slow down with the judging.
  • KnitOrMiss
    KnitOrMiss Posts: 10,103 Member
    edited March 2015
    20. You must be lazy because you are overweight. If it was only that easy to exercise and the pounds melt off as it does for someone without PCOS.

    ^ That haunts me. Everyone assumes that I'm lazy and eat garbage, when in fact I count calories, weigh my food, exercise 30-90 minutes every day... My weight/inches are doing anything but "melting" or "falling" off. People need to slow down with the judging.

    SOOOOOOO true of anyone about anything. Judging is not for us!!!!

    And I always had friends/family/doctors shocked, "You don't eat like a fat person!" Ugh, if I had a $1 for every time I heard that over the years, I'd never have to work again.
  • Dragonwolf
    Dragonwolf Posts: 5,600 Member
    KnitOrMiss wrote: »
    20. You must be lazy because you are overweight. If it was only that easy to exercise and the pounds melt off as it does for someone without PCOS.

    ^ That haunts me. Everyone assumes that I'm lazy and eat garbage, when in fact I count calories, weigh my food, exercise 30-90 minutes every day... My weight/inches are doing anything but "melting" or "falling" off. People need to slow down with the judging.

    SOOOOOOO true of anyone about anything. Judging is not for us!!!!

    And I always had friends/family/doctors shocked, "You don't eat like a fat person!" Ugh, if I had a $1 for every time I heard that over the years, I'd never have to work again.

    Ugh, the worst part is when it's a doctor doing it. That infuriates me!
  • MsBeverleyH
    MsBeverleyH Posts: 99 Member
    I want to hug all of you. I thought I was a freak of nature who sucked at losing weight. <3
  • alfiedn
    alfiedn Posts: 425 Member
    I discovered that my GYN viewed this as a fertility issue. Luckily, I was smart enough to view it for what it is: a metabolic/hormonal issue that effects my entire body. I realize this has kind of been covered in #16, but it strikes home for me! I DO want to get pregnant and I AM frustrated that I currently can't. However, this is so much more than that...
  • 42carrots
    42carrots Posts: 97 Member
    alfiedn wrote: »
    I discovered that my GYN viewed this as a fertility issue. Luckily, I was smart enough to view it for what it is: a metabolic/hormonal issue that effects my entire body. I realize this has kind of been covered in #16, but it strikes home for me! I DO want to get pregnant and I AM frustrated that I currently can't. However, this is so much more than that...

    This drives me insane, it seems to be part of the very outdated thinking that a woman's primary value is to have children, and just generally being healthy and functioning normally is secondary, and not nearly as important. It's confoundingly offensive and needs to change.
  • alfiedn
    alfiedn Posts: 425 Member
    42carrots wrote: »
    alfiedn wrote: »
    I discovered that my GYN viewed this as a fertility issue. Luckily, I was smart enough to view it for what it is: a metabolic/hormonal issue that effects my entire body. I realize this has kind of been covered in #16, but it strikes home for me! I DO want to get pregnant and I AM frustrated that I currently can't. However, this is so much more than that...

    This drives me insane, it seems to be part of the very outdated thinking that a woman's primary value is to have children, and just generally being healthy and functioning normally is secondary, and not nearly as important. It's confoundingly offensive and needs to change.

    I'm not sure I see it quite the same way as you. As I view it, my GYN is mostly working with women who are trying to get pregnant and he does know that's my goal at the moment. Seems like he just isn't as qualified to speak to general medicine and is very specialized. Some GYNs might have more general knowledge, but mine doesn't seem to concern himself with it. That's why I have a primary care physician as well. Would be nice if all those doctors talked to each other, though!
  • KnitOrMiss
    KnitOrMiss Posts: 10,103 Member
    alfiedn wrote: »
    42carrots wrote: »
    alfiedn wrote: »
    I discovered that my GYN viewed this as a fertility issue. Luckily, I was smart enough to view it for what it is: a metabolic/hormonal issue that effects my entire body. I realize this has kind of been covered in #16, but it strikes home for me! I DO want to get pregnant and I AM frustrated that I currently can't. However, this is so much more than that...

    This drives me insane, it seems to be part of the very outdated thinking that a woman's primary value is to have children, and just generally being healthy and functioning normally is secondary, and not nearly as important. It's confoundingly offensive and needs to change.

    I'm not sure I see it quite the same way as you. As I view it, my GYN is mostly working with women who are trying to get pregnant and he does know that's my goal at the moment. Seems like he just isn't as qualified to speak to general medicine and is very specialized. Some GYNs might have more general knowledge, but mine doesn't seem to concern himself with it. That's why I have a primary care physician as well. Would be nice if all those doctors talked to each other, though!

    You need an endocrinologist for the metabolic/hormonal stuff...because a primary isn't specialized in this area either! They'll have general knowledge. My gyno didn't even tell me the PCOS was official. I had to have my endo pull up the records from the other two places. I take copies of my paperwork from any doctor to all my other doctors, sign releases for them to talk, and kind of force the issue. But I'm kind of obnoxious that way, now at least. I only have one health... Mine to get proper service for...

    But I do agree with both you @alfiedn and @42carrots also because a gynecologist is there for your overall feminine health, and while a great many of them handle reproductive stuff, PCOS is classified as a metabolic disorder/syndrome first, if I recall correctly, so while it can be a fertility issue for some, it is not **only** a fertility issue, and that is where those of us not wanting to be fertile for whatever reason get somewhat frustrated. Sure, ask me about it once. Revisit it annually to make sure nothing has changed. If I answer positively, then let's talk about it in depth. If not, then move on to the rest of your job, thanks.
  • breefoshee
    breefoshee Posts: 398 Member
    I'm brand new to this.. so its good to know what to expect. As I've been reading up on PCOS, I kinda feel like my whole life would suddenly make sense if I had it. My friends have often said that I work harder just to MAINTAIN my weight than they do to LOSE weight. I go to the doctor to find out tomorrow.

    The weird thing though, is that the few friends that I have told about this have been kind of dismissive towards me about it-- like I am being a hypochondriac or just looking for an excuse or magic pill. I've kind of felt like a hamster running on a wheel for the past few years with weight loss, and honestly I'm relieved to have an answer as to why its barely budged-- or why when I don't work hard to lose it, I can so easily gain it.
  • MsBeverleyH
    MsBeverleyH Posts: 99 Member
    breefoshee wrote: »
    The weird thing though, is that the few friends that I have told about this have been kind of dismissive towards me about it-- like I am being a hypochondriac or just looking for an excuse or magic pill. I've kind of felt like a hamster running on a wheel for the past few years with weight loss, and honestly I'm relieved to have an answer as to why its barely budged-- or why when I don't work hard to lose it, I can so easily gain it.

    I'm so sorry that your friends have been that way; that's not supportive of them at all. I think that getting it looked at is definitely the right move. You'll either find out that you have it (and then you can edit your life accordingly) or you'll find out that you don't (and I know this will sound strange, but it will probably give you more motivation to try even harder with a healthy lifestyle!). Good luck out there! :smile:
  • laols01
    laols01 Posts: 57 Member
    20. You must be lazy because you are overweight. If it was only that easy to exercise and the pounds melt off as it does for someone without PCOS.

    This almost made me cry reading it. It's the most frustrating thing in the world and totally hits a nerve with me. My former boss at work (I now work in a different dept) was just diagnosed about 6 months ago and decided to go the route of weight loss surgery. She had the sleeve done within 4 months of her diagnosis and has now lost 80 lbs. I'm happy for her that she's happy with her decision, but surgery is not the answer for me...not at this point anyway. She CONTINUALLY asks why I haven't called a surgeon yet, if I want her "fat clothes" or if I "want to just be fat forever because I'm not doing anything to change it." Seriously?! I am not perfect about my diet nor working out but I sure as heck do my best. To just assume I'm ok with how I am is so unreasonable. PCOS and being overweight is hard but I feel like I still have the ability to change my own life and I need to exhaust those options prior to allowing an over-eager surgeon "redo" my insides. *End rant*

    We are all strong, awesome women...PCOS doesn't define it by any means. You ladies have been a great resource over the last couple weeks.
  • KnitOrMiss
    KnitOrMiss Posts: 10,103 Member
    laols01 wrote: »
    20. You must be lazy because you are overweight. If it was only that easy to exercise and the pounds melt off as it does for someone without PCOS.

    This almost made me cry reading it. It's the most frustrating thing in the world and totally hits a nerve with me. My former boss at work (I now work in a different dept) was just diagnosed about 6 months ago and decided to go the route of weight loss surgery. She had the sleeve done within 4 months of her diagnosis and has now lost 80 lbs. I'm happy for her that she's happy with her decision, but surgery is not the answer for me...not at this point anyway. She CONTINUALLY asks why I haven't called a surgeon yet, if I want her "fat clothes" or if I "want to just be fat forever because I'm not doing anything to change it." Seriously?! I am not perfect about my diet nor working out but I sure as heck do my best. To just assume I'm ok with how I am is so unreasonable. PCOS and being overweight is hard but I feel like I still have the ability to change my own life and I need to exhaust those options prior to allowing an over-eager surgeon "redo" my insides. *End rant*

    We are all strong, awesome women...PCOS doesn't define it by any means. You ladies have been a great resource over the last couple weeks.

    Look at it this way, @laols01‌ . Unforunately, at the rate your boss is going, it sound like she views this as a miracle of sorts. If she hasn't put in the mental work, it is likely she will regain. Putting in all the hard work to do this without intervention (whether or not it is someday necessary or recommended is moot at this point) will help you get all your cylinders firing in the right direction TOGETHER. Slow and steady wins the race, and when you finally find what "clicks" for you, you'll be rocking and rolling, and you'll know you did it "YOUR WAY."
  • laols01
    laols01 Posts: 57 Member
    KnitOrMiss wrote: »
    laols01 wrote: »
    20. You must be lazy because you are overweight. If it was only that easy to exercise and the pounds melt off as it does for someone without PCOS.

    This almost made me cry reading it. It's the most frustrating thing in the world and totally hits a nerve with me. My former boss at work (I now work in a different dept) was just diagnosed about 6 months ago and decided to go the route of weight loss surgery. She had the sleeve done within 4 months of her diagnosis and has now lost 80 lbs. I'm happy for her that she's happy with her decision, but surgery is not the answer for me...not at this point anyway. She CONTINUALLY asks why I haven't called a surgeon yet, if I want her "fat clothes" or if I "want to just be fat forever because I'm not doing anything to change it." Seriously?! I am not perfect about my diet nor working out but I sure as heck do my best. To just assume I'm ok with how I am is so unreasonable. PCOS and being overweight is hard but I feel like I still have the ability to change my own life and I need to exhaust those options prior to allowing an over-eager surgeon "redo" my insides. *End rant*

    We are all strong, awesome women...PCOS doesn't define it by any means. You ladies have been a great resource over the last couple weeks.

    Look at it this way, @laols01‌ . Unforunately, at the rate your boss is going, it sound like she views this as a miracle of sorts. If she hasn't put in the mental work, it is likely she will regain. Putting in all the hard work to do this without intervention (whether or not it is someday necessary or recommended is moot at this point) will help you get all your cylinders firing in the right direction TOGETHER. Slow and steady wins the race, and when you finally find what "clicks" for you, you'll be rocking and rolling, and you'll know you did it "YOUR WAY."

    Yes I know all of that. I appreciate the support in knowing I'm doing things in a maintainable way, it's just frustrating having the constant nagging.
  • IslandSneezerooo
    IslandSneezerooo Posts: 268 Member
    21. Lecturing me about losing weight at every single doctor's appt (related or not) is NOT helpful and comes across as highly condescending. I roll my eyes at you, Doc, because I have a mirror, I'm aware I'm overweight, and no I don't like it anymore than you do. Yes, I have put in DECADES of weight loss effort with no lasting success. Telling me to "just cut out carbs" is not helpful. Do you REALLY think I haven't tried that?!

    Not to discourage anyone, but I literally spent 6 weeks working my butt off prepping meals, cooking, measuring, weighing, logging, exercising every day - to lose less than 2 lbs... Then TOM went MIA, and BAM! I gained it all back in a matter of 2 or 3 days. Back to square one. I'm turning 39 years old in a couple months and have been living this PCOS nightmare since I was 15 years old... Last November I went to my doctor and asked for a referral to a bariatric surgeon for WLS. Some may call it "giving up"... whatever... I'm weary and I need a break from this hamster wheel.
  • WarriorCupcakeBlydnsr
    WarriorCupcakeBlydnsr Posts: 2,150 Member
    I don't think mine are separate items but add ons to what others have said:

    Weight loss doesn't work the same for everybody, even within women with PCOS, some have CICO work, some can do LCHF and have it work, some of us have to struggle and fight for every ounce, I've tried everything, unless I do a very low calorie (ie very not healthy at 500 cals or less, and I'm not doing it) diet I have to fight to lose every ounce, it took me about 14 months of eating a reasonable (1700 cal) food plan and exercising 5-6 days a week to lose 10 lbs, then something went screwy and I gained it back in a month. (On new meds and once my life settles down a little, I hope to get back to my normal workout schedule, so I can start getting it off again.)

    If you do your research and wonder if you have PCOS and at your appoinment, without discussion, your doc says you don't have it, get a new doc. I probably could have been diagnosed several years ago, really back when this became a more recognized illness, my gyn said no,when I asked because according to my research I had a majority of the signs and symptoms, when my sister was diagnosed, I asked about it again, she said no I didn't have it, when I went to an endo two (almost three) years ago and was diagnosed by her as hypothyroid/insulin resistant/PCOS and went back to my gyn as she recommended, she still said I didn't have it... I just went to a new gyn this year, she said: you have it, you have all the classic signs and symptoms, I can't believe she wouldn't even discuss it especially after the endo said it.

    Interesting point that my new gyn pointed out, that I didn't think of and was probably part of the problem with diagnosis and treatment: just because your numbers are "normal" (ie within normal range) doesn't mean they are normal for you (I don't know how many times I've told this to my friends when they've asked me about their lab results, but did I think about it for me? noooooo.... until the doc said it, then it was like "duh!")
  • jaimekbee1219
    jaimekbee1219 Posts: 96 Member
    Ll
    I don't think mine are separate items but add ons to what others have said:

    it took me about 14 months of eating a reasonable (1700 cal) food plan and exercising 5-6 days a week to lose 10 lbs, then something went screwy and I gained it back in a month.

    Ugh this. I started tracking November 2013 because my gyno wanted me to lose 20ish pounds I guess (never gave me a number but on Mon told me to lose a little more) and I've lost 14ish pounds. It has taken so damn long. So many stalls along the way... I lost 10 pounds and then was diagnosed with fibromyalgia over the summer. I was given B12 which just made me ravenous and I gained five pounds back.

    It's so frustrating. My friend had twins and lost her 15 pounds of baby weight doing the 21 day fix. I weigh and measure my food, do yoga pretty regularly, and have a super active job so it's not like I'm sedentary but it still takes me almost a month to lost half a pound. I know I shouldn't compare myself to others but it's hard not to sometimes.
  • Dragonwolf
    Dragonwolf Posts: 5,600 Member
    Ll
    I don't think mine are separate items but add ons to what others have said:

    it took me about 14 months of eating a reasonable (1700 cal) food plan and exercising 5-6 days a week to lose 10 lbs, then something went screwy and I gained it back in a month.

    Ugh this. I started tracking November 2013 because my gyno wanted me to lose 20ish pounds I guess (never gave me a number but on Mon told me to lose a little more) and I've lost 14ish pounds. It has taken so damn long. So many stalls along the way... I lost 10 pounds and then was diagnosed with fibromyalgia over the summer. I was given B12 which just made me ravenous and I gained five pounds back.

    It's so frustrating. My friend had twins and lost her 15 pounds of baby weight doing the 21 day fix. I weigh and measure my food, do yoga pretty regularly, and have a super active job so it's not like I'm sedentary but it still takes me almost a month to lost half a pound. I know I shouldn't compare myself to others but it's hard not to sometimes.

    That's actually basically how I got my diagnosis -- I had a friend that started going to Curves about the same time I started trying to lose weight. Without changing anything else, she started losing weight and had lost about 10lb in two months. In that same amount of time, I lost...nothing.

    Unfortunately, other than Metformin (which the same doctor that diagnosed me refused to put me back on after I had stopped when I was pregnant), my doctor's only suggestion for the weight was "join Weight Watchers" (never mind the fact that I'd been an MFP veteran the second and third time she suggested it). :angry:
  • WarriorCupcakeBlydnsr
    WarriorCupcakeBlydnsr Posts: 2,150 Member
    Dragonwolf wrote: »
    Ll
    I don't think mine are separate items but add ons to what others have said:

    it took me about 14 months of eating a reasonable (1700 cal) food plan and exercising 5-6 days a week to lose 10 lbs, then something went screwy and I gained it back in a month.

    Ugh this. I started tracking November 2013 because my gyno wanted me to lose 20ish pounds I guess (never gave me a number but on Mon told me to lose a little more) and I've lost 14ish pounds. It has taken so damn long. So many stalls along the way... I lost 10 pounds and then was diagnosed with fibromyalgia over the summer. I was given B12 which just made me ravenous and I gained five pounds back.

    It's so frustrating. My friend had twins and lost her 15 pounds of baby weight doing the 21 day fix. I weigh and measure my food, do yoga pretty regularly, and have a super active job so it's not like I'm sedentary but it still takes me almost a month to lost half a pound. I know I shouldn't compare myself to others but it's hard not to sometimes.

    That's actually basically how I got my diagnosis -- I had a friend that started going to Curves about the same time I started trying to lose weight. Without changing anything else, she started losing weight and had lost about 10lb in two months. In that same amount of time, I lost...nothing.

    Unfortunately, other than Metformin (which the same doctor that diagnosed me refused to put me back on after I had stopped when I was pregnant), my doctor's only suggestion for the weight was "join Weight Watchers" (never mind the fact that I'd been an MFP veteran the second and third time she suggested it). :angry:

    Did the yo-yo dieting, spent a lot of money, the last one was the HCG, lost 30 lbs on that one, when they upped me from 500 cals to 800 cals my weight loss stalled out, when they bumped me up to 1000 cals, I started gaining, they knocked me down to 800 and put me on appetite suppressants and I stalled out again, they wanted me to do another round of HCG and I said no, went to WW and gained 10 lbs in about 2 months, quit them and joined a gym started working out 6 days a week (good mix of cardio and weights) and continued to gain, went to a registered dietician (one that works with a hospital bariatric surgery program) and she put me on the food plan, continued to gain after a year of gaining a total of 40 lbs in spite of all of this (and the continual "normal" lab work) I went to an endo when the diagnosis started, even with the metformin and the thyroid meds it was still a battle to lose the 10 lbs I lost, still working out and still sticking to the food plan (I checked with her after the diagnosis, she said she would normally have me go down to 1200 cals but because of how much I work out that would be too little food, so to stick with the 1700). Until I started having screwy periods last year and old gyn wasn't helping, she kept telling me to wait it out, and I started gaining again, and gained it all back. I went to a new one earlier this month and she changed my bc pills and things are starting to calm down so hopefully I can start losing again.

  • mhulgan
    mhulgan Posts: 101 Member
    22. (Is that what number we're on?)
    "You don't look like you have PCOS..."
    This was said to me by the ultrasound tech who was checking me out as I was experiencing my second miscarriage in a year.

    I didn't have the energy to explain to her that PCOS looks different in different people.
  • KnitOrMiss
    KnitOrMiss Posts: 10,103 Member
    mhulgan wrote: »
    22. (Is that what number we're on?)
    "You don't look like you have PCOS..."
    This was said to me by the ultrasound tech who was checking me out as I was experiencing my second miscarriage in a year.

    I didn't have the energy to explain to her that PCOS looks different in different people.

    @mhulgan WTF? What does someone with PCOS "look" like? We could all post pictures here, and I bet we'd look like a diversity ad. Maybe, and I'll give him/her some credit here, maybe in saying that s/he was referring to your ovaries. Not everyone has ovarian cysts... ARGH. The stupidity and lack of general knowledge abounds, particularly in the medical field. Honestly, I think I would file a complaint on this one, because for someone not as strong as you are mentally, apparently, this could have been the straw that broke her...

    And superstronghugs. Miscarriage, no matter how early/late, no matter any circumstance, is heartbreaking. Just want to send you hugs, hugs, and hugs!
  • FireSwan
    FireSwan Posts: 170 Member
    Thank you ladies for all the posts. I'm glad I'm not the only one with PCOS that worked out and watched every bite and didn't lose weight. I kind of gave up this winter and ended up gaining 30 lbs. I'm at my heaviest and hate the way I feel. I'm back to watching my carbs and getting back into my work out routine. This time, I'm not getting on the scale. I'm going to judge my success on how I feel. I hate the way I feel now, but loved the way I felt when working out. I can't let the scale derail my health. -I'm not on Metformin or BCP; I have recently started taking Myo-inositol and folic acid. I'm hoping this will help to regulate my levels and my triglycerides. :)
  • FireSwan
    FireSwan Posts: 170 Member
    I also want to pass on hugs and sympathies to those of you that have had miscarriages or are trying to have a baby. ❤️
  • KnitOrMiss
    KnitOrMiss Posts: 10,103 Member
    FireSwan wrote: »
    Thank you ladies for all the posts. I'm glad I'm not the only one with PCOS that worked out and watched every bite and didn't lose weight. I kind of gave up this winter and ended up gaining 30 lbs. I'm at my heaviest and hate the way I feel. I'm back to watching my carbs and getting back into my work out routine. This time, I'm not getting on the scale. I'm going to judge my success on how I feel. I hate the way I feel now, but loved the way I felt when working out. I can't let the scale derail my health. -I'm not on Metformin or BCP; I have recently started taking Myo-inositol and folic acid. I'm hoping this will help to regulate my levels and my triglycerides. :)

    If your trigs are up, be sure your doc does comprehensive thyroid tests, too! It's a major indicator. And just because you're in "normal" range does not equal normal for you...

    www.stopthethyroidmadness.com
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