PCOS Ladies

mrshall1027

What would you all think of doing a weekly thread dedicated to the ladies that have PCOS?  I feel like there's a lot to learn and know about this syndrome and it might be helpful for us.  We can suggest meals, have accountability/motivation for physical activity, related health concerns, and anything else that we'd like to address.

This syndrome can lead to so many scary health issues, not just fertility related, and I think more awareness needs to be put out there.  I was diagnosed with PCOS as a teenager and I am just starting to learn about it and the impact it can have on my life.  Learning more about PCOS is motivating me to become healthier and hopefully live a longer, fuller life.

So, share your thoughts and we can go from there.

RockABye

I think there used to be a PCOS check in and a PCOS meal thing, but that was ages ago. That said, information is always good so I say go for it! Not sure how much I'll contribute because i'm lazy and all, but I do think sharing information is always good

nightmare_of_beauty

I would love to be part of a check in. 

brij2006

I'm game.

abt8113

I think this is a great idea. I haven't been diagnosed with PCOS (yet), but my Endo keeps saying that she thinks I might have it. I guess I'll know next week when I see her since she wanted to test my progresterone during my bloodwork.

BruinsBabe33

I think it's a great idea!

sgautschi

I think this would be awesome. I was recently told I most likely have PCOS. Imaging showed polycystic ovaries and my testosterone was 48, on a range of 8-48. So while it's still technically normal, my doctor is still is concerned with that number. Did anyone else who was diagnosed have similar numbers? Or were yours a lot more off the chart?

mrshall1027

Great!  I can start doing a weekly check in next week

@sgautschi My testosterone level has always been normal, so I can't help you with that part of it.  Do you have any other issues like insulin resistance, anovulatory cycles or hirsutism?

sparklingdiamond

I know my testosterone levels were checked at some point, but don't remember what the levels were.  I also don't know if mine is insulin-resistant.  I feel like the first OB who diagnosed me with this didn't really go over the results and explain things to me very well!

mrshall1027

sparklingdiamond said:

I know my testosterone levels were checked at some point, but don't remember what the levels were.  I also don't know if mine is insulin-resistant.  I feel like the first OB who diagnosed me with this didn't really go over the results and explain things to me very well!

This is a very common occurrence!  Most women live with PCOS and don't get diagnosed for years or are diagnosed incorrectly.  Since you are pregnant, I am sure you've had all kinds of blood work done.  Have they mentioned any concern about gestational diabetes?  If you are insulin resistant, you have a higher risk of gestational diabetes.  If it hasn't been done before, I would ask your doctor for a blood panel that basically checks your hormone levels, adrenal gland, insulin and glucose.  I think it is or is similar to the blood panel they run for diabetes.

OohSparkly13

I'm excited for a PCOS check-in thread! This also makes me want to call my obgyn and ask her what all my levels were since she never gave me all the actual figures.

I had my testosterone tested last year and she said it was in the normal range. I was pretty surprised by that since I definitely have the extra hair growth on my face and belly associated with high testosterone levels. 

sparklingdiamond

ystaalenburg said:

sparklingdiamond said:

I know my testosterone levels were checked at some point, but don't remember what the levels were.  I also don't know if mine is insulin-resistant.  I feel like the first OB who diagnosed me with this didn't really go over the results and explain things to me very well!

This is a very common occurrence!  Most women live with PCOS and don't get diagnosed for years or are diagnosed incorrectly.  Since you are pregnant, I am sure you've had all kinds of blood work done.  Have they mentioned any concern about gestational diabetes?  If you are insulin resistant, you have a higher risk of gestational diabetes.  If it hasn't been done before, I would ask your doctor for a blood panel that basically checks your hormone levels, adrenal gland, insulin and glucose.  I think it is or is similar to the blood panel they run for diabetes.

They haven't mentioned any concern about gestational diabetes.  I take my test next week.  They diagnosed me with PCOS mainly because I was not ovulating and when I did, had super irregular cycles.  I know I had a ton of bloodwork at my RE's office, but they just never really explained results very well!  I am not sure what they even checked for besides the hormones.

mrshall1027

OohSparkly13 said:

I'm excited for a PCOS check-in thread! This also makes me want to call my obgyn and ask her what all my levels were since she never gave me all the actual figures.

I had my testosterone tested last year and she said it was in the normal range. I was pretty surprised by that since I definitely have the extra hair growth on my face and belly associated with high testosterone levels. 

I know it's confusing to me too because I have the same thing.  I don't have a ton of extra facial hair, but I am starting to notice a few more hairs on my chin and upper lip than I used to have.  I also gain weight in my belly before anywhere else and it's the last place to come off of as well.  But, my testosterone level is totally normal.

mrshall1027

sparklingdiamond said:

ystaalenburg said:

sparklingdiamond said:

I know my testosterone levels were checked at some point, but don't remember what the levels were.  I also don't know if mine is insulin-resistant.  I feel like the first OB who diagnosed me with this didn't really go over the results and explain things to me very well!

This is a very common occurrence!  Most women live with PCOS and don't get diagnosed for years or are diagnosed incorrectly.  Since you are pregnant, I am sure you've had all kinds of blood work done.  Have they mentioned any concern about gestational diabetes?  If you are insulin resistant, you have a higher risk of gestational diabetes.  If it hasn't been done before, I would ask your doctor for a blood panel that basically checks your hormone levels, adrenal gland, insulin and glucose.  I think it is or is similar to the blood panel they run for diabetes.

They haven't mentioned any concern about gestational diabetes.  I take my test next week.  They diagnosed me with PCOS mainly because I was not ovulating and when I did, had super irregular cycles.  I know I had a ton of bloodwork at my RE's office, but they just never really explained results very well!  I am not sure what they even checked for besides the hormones.

I can't remember off the top of my head, but to be diagnosed, you need to have two or three of the identifying "symptoms".  So, if you were not ovulating, you'd also have to have hirsutism, or insulin resistance, or high testosterone, or whatever.  I can't remember what the things they look at are, but you may want to ask about that.

I only advise on that because, as I mentioned before, a lot of women are misdiagnosed and since PCOS is becoming so common, some doctors see that you are not ovulating or your testosterone level is high and automatically say you have PCOS.

OohSparkly13

ystaalenburg said:

OohSparkly13 said:

I'm excited for a PCOS check-in thread! This also makes me want to call my obgyn and ask her what all my levels were since she never gave me all the actual figures.

I had my testosterone tested last year and she said it was in the normal range. I was pretty surprised by that since I definitely have the extra hair growth on my face and belly associated with high testosterone levels. 

I know it's confusing to me too because I have the same thing.  I don't have a ton of extra facial hair, but I am starting to notice a few more hairs on my chin and upper lip than I used to have.  I also gain weight in my belly before anywhere else and it's the last place to come off of as well.  But, my testosterone level is totally normal.

Same thing with me...except I have the biggest issue with sideburns. I can't go more than 1 or 2 days without doing something about them. And seriously, I can't tell you how many times I have been asked if I am pregnant because of how I gain pretty much all my weight in my belly. There's nothing a woman dealing with IF loves more than to constantly get asked if she is pregnant...or when she's due...if she she just recently had a baby! It kinda makes me want to punch people.

RockABye

PCOS is such a weird animal. My main symptom is lack of ovulation/irregular(nonexistant) cycles. I also have wonky hormones (I don't remember what.. that testing was way too long ago!), thinning hair, anxiety, IF (obviously), and weight gain. I also tend to get pelvic pain here and there. Oddly, I do not have any of the excess hair that is common (i have very little hair anyway!) and I have never been told I have the string of pearls. Doesn't matter.. it all sucks.

mrshall1027

OohSparkly13 said:

ystaalenburg said:

OohSparkly13 said:

I'm excited for a PCOS check-in thread! This also makes me want to call my obgyn and ask her what all my levels were since she never gave me all the actual figures.

I had my testosterone tested last year and she said it was in the normal range. I was pretty surprised by that since I definitely have the extra hair growth on my face and belly associated with high testosterone levels. 

I know it's confusing to me too because I have the same thing.  I don't have a ton of extra facial hair, but I am starting to notice a few more hairs on my chin and upper lip than I used to have.  I also gain weight in my belly before anywhere else and it's the last place to come off of as well.  But, my testosterone level is totally normal.

Same thing with me...except I have the biggest issue with sideburns. I can't go more than 1 or 2 days without doing something about them. And seriously, I can't tell you how many times I have been asked if I am pregnant because of how I gain pretty much all my weight in my belly. There's nothing a woman dealing with IF loves more than to constantly get asked if she is pregnant...or when she's due...if she she just recently had a baby! It kinda makes me want to punch people.

Ugh, I am so sorry you get asked those questions!!  It's the worst!  I've been asked that before too.  It was actually when I was thinner, but I still had a little pudge in my tummy so it looked like I could have been 3-4 months pregnant.  It really pissed me off!  People just have no filter sometimes.

mrshall1027

RockABye said:

PCOS is such a weird animal. My main symptom is lack of ovulation/irregular(nonexistant) cycles. I also have wonky hormones (I don't remember what.. that testing was way too long ago!), thinning hair, anxiety, IF (obviously), and weight gain. I also tend to get pelvic pain here and there. Oddly, I do not have any of the excess hair that is common (i have very little hair anyway!) and I have never been told I have the string of pearls. Doesn't matter.. it all sucks.

I have the thinning hair issue too.  Other than IF, that's the one thing that has really brought down my self esteem.  I finally went to see a dermatologist and he told me to start using Rogain for men.  I just started it a couple of days ago, so we'll see how it goes.  He also prescribed me something, but I can't think of the name right now.  Have you seen a dermatologist?

sparklingdiamond

ystaalenburg said:

sparklingdiamond said:

ystaalenburg said:

sparklingdiamond said:

I know my testosterone levels were checked at some point, but don't remember what the levels were.  I also don't know if mine is insulin-resistant.  I feel like the first OB who diagnosed me with this didn't really go over the results and explain things to me very well!

This is a very common occurrence!  Most women live with PCOS and don't get diagnosed for years or are diagnosed incorrectly.  Since you are pregnant, I am sure you've had all kinds of blood work done.  Have they mentioned any concern about gestational diabetes?  If you are insulin resistant, you have a higher risk of gestational diabetes.  If it hasn't been done before, I would ask your doctor for a blood panel that basically checks your hormone levels, adrenal gland, insulin and glucose.  I think it is or is similar to the blood panel they run for diabetes.

They haven't mentioned any concern about gestational diabetes.  I take my test next week.  They diagnosed me with PCOS mainly because I was not ovulating and when I did, had super irregular cycles.  I know I had a ton of bloodwork at my RE's office, but they just never really explained results very well!  I am not sure what they even checked for besides the hormones.

I can't remember off the top of my head, but to be diagnosed, you need to have two or three of the identifying "symptoms".  So, if you were not ovulating, you'd also have to have hirsutism, or insulin resistance, or high testosterone, or whatever.  I can't remember what the things they look at are, but you may want to ask about that.

I only advise on that because, as I mentioned before, a lot of women are misdiagnosed and since PCOS is becoming so common, some doctors see that you are not ovulating or your testosterone level is high and automatically say you have PCOS.

The other reason I was diagnosed was because I had all the little cysts around my ovaries.  And I did have some off hormone levels, along with no ovulation.  Oh the joys of PCOS :-p

RockABye

ystaalenburg said:

RockABye said:

PCOS is such a weird animal. My main symptom is lack of ovulation/irregular(nonexistant) cycles. I also have wonky hormones (I don't remember what.. that testing was way too long ago!), thinning hair, anxiety, IF (obviously), and weight gain. I also tend to get pelvic pain here and there. Oddly, I do not have any of the excess hair that is common (i have very little hair anyway!) and I have never been told I have the string of pearls. Doesn't matter.. it all sucks.

I have the thinning hair issue too.  Other than IF, that's the one thing that has really brought down my self esteem.  I finally went to see a dermatologist and he told me to start using Rogain for men.  I just started it a couple of days ago, so we'll see how it goes.  He also prescribed me something, but I can't think of the name right now.  Have you seen a dermatologist?

Yes, I have a regular derm. I've wanted to start using Rogaine for awhile, but I was told you're not supposed to do it if you're pregnant or trying to get pregnant, so I haven't started it. I think it's only a matter of time... my aunt and my mom have both worn wigs for years. *sigh*

fusionbride

I was on this board years and years ago, and we used to have a PCOS check-in and I really appreciated the community and support.  wI won't start TTC again for a few months, but I'd come back to the board early for a checkin-- what day would you do it?

mrshall1027

RockABye said:

ystaalenburg said:

RockABye said:

PCOS is such a weird animal. My main symptom is lack of ovulation/irregular(nonexistant) cycles. I also have wonky hormones (I don't remember what.. that testing was way too long ago!), thinning hair, anxiety, IF (obviously), and weight gain. I also tend to get pelvic pain here and there. Oddly, I do not have any of the excess hair that is common (i have very little hair anyway!) and I have never been told I have the string of pearls. Doesn't matter.. it all sucks.

I have the thinning hair issue too.  Other than IF, that's the one thing that has really brought down my self esteem.  I finally went to see a dermatologist and he told me to start using Rogain for men.  I just started it a couple of days ago, so we'll see how it goes.  He also prescribed me something, but I can't think of the name right now.  Have you seen a dermatologist?

Yes, I have a regular derm. I've wanted to start using Rogaine for awhile, but I was told you're not supposed to do it if you're pregnant or trying to get pregnant, so I haven't started it. I think it's only a matter of time... my aunt and my mom have both worn wigs for years. *sigh*

Oh yes, that's true.  We are taking a break for now, so I figured I'd use it to see if it makes a difference.

I use clip in extensions sometimes and have considered getting more permanent ones.  They're a little pricey but I feel much more confident when I have them in.

mrshall1027

fusionbride said:

I was on this board years and years ago, and we used to have a PCOS check-in and I really appreciated the community and support.  wI won't start TTC again for a few months, but I'd come back to the board early for a checkin-- what day would you do it?

Do you remember what was discussed on the old PCOS check in?  I'm thinking Wednesday's would be good.

RockABye

ystaalenburg said:

fusionbride said:

I was on this board years and years ago, and we used to have a PCOS check-in and I really appreciated the community and support.  wI won't start TTC again for a few months, but I'd come back to the board early for a checkin-- what day would you do it?

Do you remember what was discussed on the old PCOS check in?  I'm thinking Wednesday's would be good.

Here's a couple old ones

http://forums.thenest.com/discussion/6817640/pcos-check-in

http://forums.thenest.com/discussion/7783198/pcos-check-in

mrshall1027

RockABye said:

ystaalenburg said:

fusionbride said:

I was on this board years and years ago, and we used to have a PCOS check-in and I really appreciated the community and support.  wI won't start TTC again for a few months, but I'd come back to the board early for a checkin-- what day would you do it?

Do you remember what was discussed on the old PCOS check in?  I'm thinking Wednesday's would be good.

Here's a couple old ones

http://forums.thenest.com/discussion/6817640/pcos-check-in

http://forums.thenest.com/discussion/7783198/pcos-check-in

Thanks!!  This will definitely help get things rolling

fusionbride

ystaalenburg said:

RockABye said:

ystaalenburg said:

fusionbride said:

I was on this board years and years ago, and we used to have a PCOS check-in and I really appreciated the community and support.  wI won't start TTC again for a few months, but I'd come back to the board early for a checkin-- what day would you do it?

Do you remember what was discussed on the old PCOS check in?  I'm thinking Wednesday's would be good.

Here's a couple old ones

http://forums.thenest.com/discussion/6817640/pcos-check-in

http://forums.thenest.com/discussion/7783198/pcos-check-in

Thanks!!  This will definitely help get things rolling

Rockabye is awesome-- those old posts seem to cover the main kinds of things we could talk about.  I think we also had PCOS people send the check-in leader suggested questions/topics.I think a few one-time questions to learn about each other like, when were you diagnosed, why/how were you diagnosed, what are your main symptoms, etc might be good.  I like learning about others' experiences

thanks for starting this back up!

sgautschi

@ystaalenburg Since I've never really charted/temped I don't know for sure if I have had annovulatory cycles. I have had quite a few "long" cycles in the past though (40-45 days). I know that's not crazy long for PCOS ladies, but longer than my normal, which is around 30-32 days. I have always had a problem with AF length, varies between 2 and 9 days, not sure if that classifies my cycles as irregular or not. I think I am slightly on the hairier side, but not by a whole lot. I feel like I shave my legs/armpits daily, but I never thought anything of it. And my acne is always out of control. I always get those bad oily ones.  

I would've never thought of PCOS, but I went in to get an MRI of my back/pelvis to diagnose some lower back/hip pain I've had for years now, always worse with AF, but doesn't go away between cycles. And they found the polycystic ovaries. They also found that I have Pelvic Congestion Syndrome (PCS), and I have a strong family history of endo and have been told I likely have it as well, given my family history and symptoms (severe pain during AF and a lot of times with ovulation). Add that to IBS and IC and I've got almost all the abbreviations covered. Lol

mrshall1027

sgautschi said:

@ystaalenburg Since I've never really charted/temped I don't know for sure if I have had annovulatory cycles. I have had quite a few "long" cycles in the past though (40-45 days). I know that's not crazy long for PCOS ladies, but longer than my normal, which is around 30-32 days. I have always had a problem with AF length, varies between 2 and 9 days, not sure if that classifies my cycles as irregular or not. I think I am slightly on the hairier side, but not by a whole lot. I feel like I shave my legs/armpits daily, but I never thought anything of it. And my acne is always out of control. I always get those bad oily ones.  

I would've never thought of PCOS, but I went in to get an MRI of my back/pelvis to diagnose some lower back/hip pain I've had for years now, always worse with AF, but doesn't go away between cycles. And they found the polycystic ovaries. They also found that I have Pelvic Congestion Syndrome (PCS), and I have a strong family history of endo and have been told I likely have it as well, given my family history and symptoms (severe pain during AF and a lot of times with ovulation). Add that to IBS and IC and I've got almost all the abbreviations covered. Lol

I'm so sorry you have to deal with all of that!  You must be one strong woman!!

The acne and extra hair growth is probably related to your testosterone level.  Does you doctor have any extra testing scheduled to diagnose you with PCOS?

sgautschi

Semi BR


@ystaalenburg Thanks. It's tough a lot of days because I'm constantly in pain, but I try not to complain too much because I feel very fortunate it didn't really affect my TTC journey (surprisingly). And that makes sense as far as the hair/acne goes.

My doctor just kind of left it at that and said she recommended going on BC. I think they are limited in what they can do because I'm BFing and plan to TTC at some point in the next year or two. What other tests are there?

mrshall1027

I can't remember what tests they ran on me when I was diagnosed since it was about 15 years ago.  But, I'd see if they can just run some blood tests.  You want to make sure your insulin level is good because PCOS can make you have insulin resistance, which can lead to diabetes if you're not careful.  If you are in a lot of pain, and they think you may have endo, then I'd see if they can do a hysteroscopy (?) so they can see what's really going on in there.

sgautschi

@ystaalenburg They did do the diabetes lab and it came back normal, so that's good news. I think at my next appointment I will ask about more testing. I'd like to know exactly why I'm dealing with.

In the meantime I am trying to improve my diet and exercise. Those can't hurt.