Things about PCOS You Wish Others Understood/Are Tired of Explaining - Ongoing List!
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KnitOrMiss
Posts: 10,104 Member
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...
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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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.0
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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!0 -
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!!!0 -
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.0 -
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.0 -
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*1 -
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.1
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Journeywithyou 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.0 -
MsBeverleyH wrote: »Journeywithyou 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.1 -
KnitOrMiss wrote: »MsBeverleyH wrote: »Journeywithyou 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!0 -
I want to hug all of you. I thought I was a freak of nature who sucked at losing weight.
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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...0
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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.0 -
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!0 -
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.0 -
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.0 -
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!
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Journeywithyou 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.0 -
Journeywithyou 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."0 -
KnitOrMiss wrote: »Journeywithyou 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.0
