# Anxiety about PCOS and how to handle it



## Tooz (Aug 12, 2009)

OneHauteMama said:


> What I meant was that I'm fat because I have PCOS...so therefore, genetically, yeah they kind of ARE shit lol. I didn't mean it to come across that fat people have shitty genes...I love fat people and have no problem with being fat myself. I'm saying for me personally that's the case. My genes _are _shitty and it comes from his side lol. Didn't mean to offend if I did.
> 
> 
> As for boundaries...he isn't the type that respects them, so it would be wasted breath.



OH! Yeah, the PCOS would constitute something like that! Sometimes I think I might have it. I don't have insurance though, so I can't really go through the diagnostics.


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## AshleyEileen (Aug 12, 2009)

Tooz said:


> OH! Yeah, the PCOS would constitute something like that! Sometimes I think I might have it. I don't have insurance though, so I can't really go through the diagnostics.



I think I have it, too. I have insurance but I'm afraid to go. =\


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## thatgirl08 (Aug 12, 2009)

AshleyEileen said:


> I think I have it, too. I have insurance but I'm afraid to go. =\



Same here.


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## msbard90 (Aug 12, 2009)

don't want to make myself a victim here- but this thread about the pcos (i know that wasn't the original point of the thread) really got to me. I think I might have it too... and i'm scared to find out


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## thatgirl08 (Aug 12, 2009)

msbard90 said:


> don't want to make myself a victim here- but this thread about the pcos (i know that wasn't the original point of the thread) really got to me. I think I might have it too... and i'm scared to find out



I'm scared too so I just keep pretending I don't have it. *fingers in ears* LALALALALALALALA


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## AshleyEileen (Aug 12, 2009)

thatgirl08 said:


> I'm scared too so I just keep pretending I don't have it. *fingers in ears* LALALALALALALALA



There are so many nights that I've cried myself to sleep about it. I really need to just man up and go.


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## thatgirl08 (Aug 12, 2009)

Ladies, we should all make a pact to go to the doctors and get the tests done.


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## msbard90 (Aug 12, 2009)

i hate the doctor  not any one in particular... just going in general. I don't like the nurse weighing me, because she always has that disgusted look on her face like I'm some flipping whale or something..... after that i'm in such a bad mood... I especially dont want to hear if somethings wrong with me. I dont want to be labed with a "condition"


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## thatgirl08 (Aug 12, 2009)

msbard90 said:


> i hate the doctor  not any one in particular... just going in general. I don't like the nurse weighing me, because she always has that disgusted look on her face like I'm some flipping whale or something..... after that i'm in such a bad mood... I especially dont want to hear if somethings wrong with me. I dont want to be labed with a "condition"



I know, it sucks. I hate getting weighed too.. sometimes I ask them if we can just skip that (like if it's not related to whatever my appointment is about) but I generally just try to stay confident and ignore any nasty looks they give me. No one wants to have a condition, and I'm scared to go too :/ but I hear PCOS can be managed well with medicine and such so I'm trying to get up the courage to go.


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## Weeze (Aug 12, 2009)

So... those of you who think you have pcos REALLY really REALLY REALLY need to get tested because it's honestly probably only going to get worse. I'm... in between gynos right now, because my old one was... a terrible human being who made me feel like she didn't have time for me. Let me tell you, I'm getting over my time right now, and while it only comes 3-4 times a year, it's utter HELL. I pretty much can't move for a couple days. everything from your shoulders to your knees just cramp up and you seriously just.. can't do it. and I'm comparing the pain to wisdom teeth, getting your tonsils out, and going 50 mph into the back of a truck, it's right up there. 

Sound like you? Get your ass to a doctor and don't take no for an answer, and if they're not helping then find someone else. I know it's hard to find a new one, because i'm dealing with it right now... but I can't deal with it anymore. I don't want to see anyone else having similar problems.


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## thatgirl08 (Aug 12, 2009)

krismiss said:


> So... those of you who think you have pcos REALLY really REALLY REALLY need to get tested because it's honestly probably only going to get worse. I'm... in between gynos right now, because my old one was... a terrible human being who made me feel like she didn't have time for me. Let me tell you, I'm getting over my time right now, and while it only comes 3-4 times a year, it's utter HELL. I pretty much can't move for a couple days. everything from your shoulders to your knees just cramp up and you seriously just.. can't do it. and I'm comparing the pain to wisdom teeth, getting your tonsils out, and going 50 mph into the back of a truck, it's right up there.
> 
> Sound like you? Get your ass to a doctor and don't take no for an answer, and if they're not helping then find someone else. I know it's hard to find a new one, because i'm dealing with it right now... but I can't deal with it anymore. I don't want to see anyone else having similar problems.



See, I don't have the cramping problem whatsoever. My periods are generally cramp free and when I do have them, it's totally dealable. I have some of the other symptoms though, most actually, so I don't know.


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## Sandie_Zitkus (Aug 13, 2009)

PCOS is a syndrome not a direct diagnosis. So you can have all the symptoms or none. It can be severe or mild. I did not catch mine until I was 40. By that time I had corse black hair everywhere, HBP, no periods or extremely painful/heavy ones. moods that were horrific, depression, etc., etc.

Go get checked now before it gets worse. Remember the Doctor works for you. Go in ready to defend yourself. Use your fear/anger to let the Dr. know you cannot be intimidated. 

I have a wonderful Dr. now - but it took 46 years to find her.

Good luck ladies, your health is worth dealing with a dickhead for an hour. Or keep looking until you find a good doc. They are out there.


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## thatgirl08 (Aug 13, 2009)

Thanks Sandie for advice.

Also, sorry OP for derailing your thread!!


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## Crystal (Aug 13, 2009)

Tooz said:


> OH! Yeah, the PCOS would constitute something like that! Sometimes I think I might have it. I don't have insurance though, so I can't really go through the diagnostics.





AshleyEileen said:


> I think I have it, too. I have insurance but I'm afraid to go. =\





thatgirl08 said:


> Same here.





msbard90 said:


> don't want to make myself a victim here- but this thread about the pcos (i know that wasn't the original point of the thread) really got to me. I think I might have it too... and i'm scared to find out



I hate to add to the derailing of the thread, but I think I have it as well. The mood swings, the irregular periods, the abnormal body hair (that is SO monotonous and time-consuming to get rid of). But, I do not have insurance right now and cannot go. 

When I was 18, I went to be tested for PCOS. But, instead of testing me, she immediately told me that because I was fat, I needed to lose weight and that it would solve all my problems of irregular periods, hair growth, and mood swings. She tested my blood sugar and then kicked me out the door. 

I'm almost afraid to go somewhere now to be tested because of that horrible experience.


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## thatgirl08 (Aug 13, 2009)

CrystalUT11 said:


> I hate to add to the derailing of the thread, but I think I have it as well. The mood swings, the irregular periods, the abnormal body hair (that is SO monotonous and time-consuming to get rid of). But, I do not have insurance right now and cannot go.
> 
> When I was 18, I went to be tested for PCOS. But, instead of testing me, she immediately told me that because I was fat, I needed to lose weight and that it would solve all my problems of irregular periods, hair growth, and mood swings. She tested my blood sugar and then kicked me out the door.
> 
> I'm almost afraid to go somewhere now to be tested because of that horrible experience.



I'm afraid that that's what is going to happen to me too. :/


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## OneHauteMama (Aug 13, 2009)

For all you who suspect you have PCOS, please please PLEASE go and get checked. Your best bet is to see an endocrinologist, NOT a gynecologist. PCOS is an endocrine disorder, not a reproductive disorder. The reproductive symptoms are simply that...symptoms. They aren't the root of the problem. An endo will do all the correct tests to see your level of PCOS (which, by the way, some PCOS symptoms are similar to hypothyroid and an endo will test that, too) and what you can do to control it. 

PCOS is NOT the end of the world, ladies. I did struggle with fertility for a while, but ended up with some beautiful children at the end of it. With medication (or alternative therapies), exercise, and yes, diet, it can be controlled and you can live a happy and virtually mood-swing-free life...with normal periods and all lol. 

If anyone would like, you can PM me and I can give you some resources to check out.


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## Sandie_Zitkus (Aug 13, 2009)

really good online resources:

www.soulcysters.com


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## butch (Aug 14, 2009)

These posts were moved from another thread, as this seems like an important topic for our community that should be addressed here _and_ in the Health Forum. Being a tech-adverse newish mod, it may take me a bit to iron out this thread, so bear with me.


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## AshleyEileen (Aug 14, 2009)

butch said:


> These posts were moved from another thread, as this seems like an important topic for our community that should be addressed here _and_ in the Health Forum. Being a tech-adverse newish mod, it may take me a bit to iron out this thread, so bear with me.



Thank you so much!


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## Weeze (Aug 14, 2009)

Aaaaalso. A lot of the ladies here talking about potentially having it are younger and approaching that age where we're getting ready to start thinking about maybe possibly having babies and um, if you have untreated pcos you're goig to have problems. Even if it's not a priority right now, it's still important if you change your mind down the road, you know?


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## Tracyarts (Aug 14, 2009)

It's not something you can really let slide because you don't think the symptoms are all that bad or because you aren't concerned about trying to get pregnant.

There are some really serious possible long-term complications of PCOS. Heart disease, diabetes, and endometrial cancer. I have known women who let their PCOS go untreated during their 20's and 30's develop these problems in their 40's and 50's.

Some women have success with alternative therapies and special diets, etc... But there are many who need medication to regulate their hormone levels because those methods will not work for them; no matter how committed they are to them and no matter how badly they want them to work. And that is what causes the long-term complications, the hormone imbalances. Because even though the symptoms might not seem so bad, and even though you might be able to mask or manage some of the symptoms with medications or other therapies, as long as the hormone levels are out of balance, the damage is being done. 

If you have insurance or access to medical care on a sliding fee scale, get checked out and don't allow doctors to dismiss you. Keep trying and trying until you find somebody who takes PCOS seriously and who will treat the syndrome, not the symptoms. I went to several doctors before I found one who was willing and able to treat me effectively. 

Tracy


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## KendraLee (Aug 14, 2009)

I dont understand why everyone is so afraid to find out. I was diagnosed with it probably about 15 years ago after going months between periods. I was diagnosed very early so there werent that many cysts. I was treated with birth control and glucophage (a diabetes med that not all drs use to treat pcos) and started to loose a little weight. As far as I know I no longer have any complications. 
I also have a friend who was diagnosed with it and had more problems than me and she has had two children.

The sooner you know and treat it the better.


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## Tooz (Aug 14, 2009)

I'm not really scared to find out. I don't care about getting weighed, etc., but I don't have health insurance, and I have no job sooo no income. I'm not even sure I have it-- I just wonder sometimes. If it made me infertile, that is actually a positive outcome for me.


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## thatgirl08 (Aug 14, 2009)

Tooz said:


> If it made me infertile, that is actually a positive outcome for me.



Seconding this. 

I'm not really scared of finding out I guess.. more just nervous about a doctor being a bitch about it.. too many horror stories. Also doctor's copays that I need to pay out of my own pocket with my non existant cash flow.. aka, I'm fuckin' broke.


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## Crystal (Aug 14, 2009)

Because I am still in college, I am on my mother's insurance plan. She is laid off right now (along with everyone else in the country, it seems) and does not have insurance benefits. As soon as she goes back to work, I plan on making a doctor's appointment with an endocrinologist (I assume this is who I should see) about my PCOS symptoms. With weight gain, irregular periods, abnormal hair growth, and mood swings, I am almost positive that I have it and I need to get treatment as soon as possible.

I do want to have children some day, and as you guys have said, the longer I wait, the worse it will become.

Gah, if I could just get rid of the excess facial hair, I could deal with the weight gain and irregular periods. Waxing is so incredibly time-consuming, annoying, messy, and leaves my face looking really red.


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## Keb (Aug 14, 2009)

I don't have insurance but I've got a lot of the symptoms, too. I'm scared that if I do get it checked out on my own dime (not that I'm rich, but I could probably), I'll then be rendered ineligible for insurance benefits later. 

I don't have a lot of faith in Obama's plans to fix that problem, or much else about health care, actually.


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## katorade (Aug 14, 2009)

CrystalUT11 said:


> I hate to add to the derailing of the thread, but I think I have it as well. The mood swings, the irregular periods, the abnormal body hair (that is SO monotonous and time-consuming to get rid of). But, I do not have insurance right now and cannot go.
> 
> When I was 18, I went to be tested for PCOS. But, instead of testing me, she immediately told me that because I was fat, I needed to lose weight and that it would solve all my problems of irregular periods, hair growth, and mood swings. She tested my blood sugar and then kicked me out the door.
> 
> I'm almost afraid to go somewhere now to be tested because of that horrible experience.



While it's true that excess weight CAN result in those symptoms, as can other issues like hypothyroidism, it's total shit that she wouldn't even test you for it! Especially since specialists speculate that more than 50% of women who are overweight and have irregular periods will have PCOS, and that the actual number is probably much higher.

Keep in mind that when you're looking for a doctor, you can set up a short appointment with them just to talk and ask them questions related to their experience with plus-size patients before actually going for an exam.

If anyone is interested, this is a link to a list of doctors that reviewers have deemed "fat friendly". Even if a gynecologist is not listed for your city or state, it might be worth a shot calling a doctor that is and seeing if they can refer you to one they know will be understanding: http://www.cat-and-dragon.com/stef/fat/ffp.html

Also, I think it would be a great idea if we had a thread dedicated on this forum to BBW-friendly doctors (or ones to avoid) that members here go to or have gone to. We're a fairly spread-out crowd, but many of us live in close proximity to one another.


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## AshleyEileen (Aug 14, 2009)

Tooz said:


> If it made me infertile, that is actually a positive outcome for me.



That's why I've cried so many nights. If I were told that I won't be able to have children, I'd go crazy. All I want in life is to be a mother.


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## olwen (Aug 14, 2009)

katorade said:


> While it's true that excess weight CAN result in those symptoms, as can other issues like hypothyroidism, it's total shit that she wouldn't even test you for it! Especially since specialists speculate that more than 50% of women who are overweight and have irregular periods will have PCOS, and that the actual number is probably much higher.
> 
> Keep in mind that when you're looking for a doctor, you can set up a short appointment with them just to talk and ask them questions related to their experience with plus-size patients before actually going for an exam.
> 
> ...



Well, if someone is willing to start a list, it could be added to the important threads thread.


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## olwen (Aug 14, 2009)

Keb said:


> I don't have insurance but I've got a lot of the symptoms, too. I'm scared that if I do get it checked out on my own dime (not that I'm rich, but I could probably), I'll then be rendered ineligible for insurance benefits later.
> 
> I don't have a lot of faith in Obama's plans to fix that problem, or much else about health care, actually.



Fat people are sometimes already denied health insurance just based on weight alone. I honestly don't know if it would matter if you had a preexisting condition or not if your bmi is already over a certain number. Even people with allergies can be denied since it's considered a pre-existing condition....it's all fucking stupid....


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## thatgirl08 (Aug 14, 2009)

AshleyEileen said:


> That's why I've cried so many nights. If I were told that I won't be able to have children, I'd go crazy. All I want in life is to be a mother.



I hear the longer you go without getting treatment, the higher the risk of that occuring is. I'm not trying to scare you but since this is a legitimate concern for you, I'd get yourself to a doctor asap. I'm not sure if you're one of the people who said they didn't have insurance, but maybe there would be a way for you to get tested for free if you go to a clinic or something?


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## katorade (Aug 14, 2009)

Perhaps Planned Parenthood?










PPPPPPP.


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## IndyGal (Aug 15, 2009)

I have all of the symptoms and have been tested. I had one doc (a specialist) say it was PCOS before she ran tests. I went to another specialist (fat friendly and known for his PCOS treatment) who said he thought it was PCOS and ran the tests - everything was normal. I go back to my family doctor in two weeks. I'm going to voice my concerns AGAIN with her. 

My symptoms: lactating (and my only child is 6 and I didn't breast feed); thinning hair on my head; dark, coarse hair in my chin; irregular menstrual cycles (if I have one at all); overly tired; overly moody (which this and the previous could be depression-related). 

The tests: blood work (all came back fine); glucose intolerance; ultrasound of ovaries (they look dandy)

So...you can have a ton of symptoms, take the tests and still not have PCOS.


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## butch (Aug 15, 2009)

There is a sticky thread in the health forum for fat friendly doctors, check it out:

http://www.dimensionsmagazine.com/forums/showthread.php?t=37951


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## msbard90 (Aug 15, 2009)

AshleyEileen said:


> That's why I've cried so many nights. If I were told that I won't be able to have children, I'd go crazy. All I want in life is to be a mother.



aww it's not impossible... I bet there's people that can help with that too  thats so sad don't make me cry


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## AshleyEileen (Aug 15, 2009)

thatgirl08 said:


> I hear the longer you go without getting treatment, the higher the risk of that occuring is. I'm not trying to scare you but since this is a legitimate concern for you, I'd get yourself to a doctor asap. I'm not sure if you're one of the people who said they didn't have insurance, but maybe there would be a way for you to get tested for free if you go to a clinic or something?



I know this. I have insurance. It's just finding the time to go. I've never been to the gyno and I'll be 23 next month.


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## Tooz (Aug 15, 2009)

AshleyEileen said:


> I know this. I have insurance. It's just finding the time to go. I've never been to the gyno and I'll be 23 next month.



I went for my first time when I was 24. Really, hun, you should go. It's not scary at all if you find an understanding female doc.


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## AshleyEileen (Aug 15, 2009)

Tooz said:


> I went for my first time when I was 24. Really, hun, you should go. It's not scary at all if you find an understanding female doc.



I've been told that I should go since I was 18. My thoughts were that if I'm not having sex, then I don't need to go. I'm still not having sex, but I really should go.


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## thatgirl08 (Aug 15, 2009)

I've only been to the gyno once and I was already having sex but she said that generally they suggest girls go before they have sex so they can have a baseline or something.

It wasn't nearly as bad as I thought.. I mean, it wasn't exactly fun but the whole thing was over so quick it wasn't bad at all.


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## ashmamma84 (Aug 15, 2009)

I've been tested for PCOS; years ago, but I'm thinking of getting tested again.

And pap smears and the like aren't fun, but crucial to the health of my 'gina. So, I suck it up and go. And it's just not about whether one is having sex or not - irregularities of the cervix, cancers, etc. can happen to any woman. Let's all do our part and try to be proactive and prevent those things!


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## Miss Vickie (Aug 15, 2009)

Sandie_Zitkus said:


> really good online resources:
> 
> www.soulcysters.com



Quoted for awesomeness. Yes. Please. Check out this site and go get seen, those of you who think you have it. It doesn't "just" affect your fertility -- it puts you at enormous risk for heart disease and diabetes.

Please.

Go.

Now.

The good news is that there are medications. This is not your mother's PCOS, ladies. There are much better ways of treating it, doctors are much more knowledgeable about it, and even arriving at a diagnosis has come a long way. I totally understand not wanting to go to the doctor but if you go early and get treated early, in the long run you'll have fewer nasty run ins with doctors and hospitals because it really does put you at risk for lots of truly ugly stuff.


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## intraultra (Aug 15, 2009)

I was diagnosed with PCOS. The medication I was given had some extremely unpleasant side effects that were not going away as promised, and I went off them.

Now I don't have insurance and I am very worried about problems down the road. I plan on going back to school, so a job with insurance is not in my near future. I really don't know how I'd pay for insurance on top of everything else when I am in school. I hear student insurance is pretty useless.

The good news to AshleyEileen...one of my sisters also has PCOS and she has 3 beautiful boys.


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## katorade (Aug 15, 2009)

intraultra said:


> I was diagnosed with PCOS. The medication I was given had some extremely unpleasant side effects that were not going away as promised, and I went off them.
> 
> Now I don't have insurance and I am very worried about problems down the road. I plan on going back to school, so a job with insurance is not in my near future. I really don't know how I'd pay for insurance on top of everything else when I am in school. I hear student insurance is pretty useless.
> 
> The good news to AshleyEileen...one of my sisters also has PCOS and she has 3 beautiful boys.



As a side note, if you do want to get a job while in school, take a look at Starbucks. You don't have to work full time to be eligible for benefits, though there is an hourly limit cut-off. The benefits they offer are fantastic and very inexpensive (I worked there for 9ish years).


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## BBW Betty (Aug 15, 2009)

intraultra said:


> I was diagnosed with PCOS. The medication I was given had some extremely unpleasant side effects that were not going away as promised, and I went off them.
> 
> Now I don't have insurance and I am very worried about problems down the road. I plan on going back to school, so a job with insurance is not in my near future. I really don't know how I'd pay for insurance on top of everything else when I am in school. I hear student insurance is pretty useless.
> 
> The good news to AshleyEileen...one of my sisters also has PCOS and she has 3 beautiful boys.



If you are going back to school full-time, there should be a student health center on campus. Not sure what they would provide, but I would think that soem basic gyno care should be available.


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## intraultra (Aug 15, 2009)

katorade said:


> As a side note, if you do want to get a job while in school, take a look at Starbucks. You don't have to work full time to be eligible for benefits, though there is an hourly limit cut-off. The benefits they offer are fantastic and very inexpensive (I worked there for 9ish years).


Thanks for the info! I will definitely need a job while I'm in school. I worked at a coffee/smoothie place a couple years ago, so Starbucks might be a real option. I have also heard there is a grocery store chain that has good benefits for workers...I forget which one, I'll have to ask around. 



BBW Betty said:


> If you are going back to school full-time, there should be a student health center on campus. Not sure what they would provide, but I would think that soem basic gyno care should be available.


I'm pretty sure PCOS goes beyond basic gynecological care. Especially since I did not respond well to the usual meds. :\ What I could really use is a dr. who specializes in PCOS.


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## missy_blue_eyez (Aug 15, 2009)

Reading this thread just makes me think (besides what any Republican may say) GOD BLESS THE NHS!

I am currently going through a phase where I am experiencing irregular periods (which has never happened to me before apart from the last 2-3 months) some mood swings, and some serious crampage, and I have been worried about it being due to PCOS. I am planning on seeing my DR sometime this week to see what gets said, but usually, as soon as I walk in the room and he looks at me he says its my weight. 

Because I am concerned about PCOS being a possible problem, I am going to DEMAND that they check me out properly instead of just determining that my weight is causing me grief.

But on a serious note, I have absolutely no idea what Id do if I had to weight for 'insurance' etc etc. I feel for you girls, I really do. Because for all the gripes I have about the NHS in this country, Ill be damned if Id ever let it go! Good luck ladies, and be good to urselves xXx

P.S on a side note, one of my best friends was diagnosed with PCOS years ago and she has one of the most beautiful little girls I have ever seen! So the myth of it totally ending your days of fertility, be open minded!


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## AshleyEileen (Aug 16, 2009)

intraultra said:


> The good news to AshleyEileen...one of my sisters also has PCOS and she has 3 beautiful boys.



I've heard about women having children regardless. It really lifts my spirits. Thank you! <3


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## Weeze (Aug 16, 2009)

Apparently Kate Gosselin has PCOS. 

No. I'm serious. I'm actually making an appointment with a dr. in the same practice as the one she goes to (we live in the same general area)

And no. I'm not just doing it because of Kate  
I'm doing it because a co-worker recommended the one nurse practitioner.

oh. and intraultra... i'll let you know if they're good, so we can get your bum in too


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## thatgirl08 (Aug 16, 2009)

krismiss said:


> Apparently Kate Gosselin has PCOS.



I knew this! I remember her talking about having PCOS and that's why she had to use the fertility drugs.


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## deepreflection (Aug 17, 2009)

Tooz said:


> OH! Yeah, the PCOS would constitute something like that! Sometimes I think I might have it. I don't have insurance though, so I can't really go through the diagnostics.



With all due respect, I don't mean to bust in on the 'BBW Forum' out of line but this is 100% on the OP's topic. 

I asked a nurse who works for Planned Parenthood and she said that under the Healthy Families program nearly anyone can get care. Those with low income or no-income can get what is basically free insurance/care. Others can use PP for care anyway even if they had a primary insurer. Perhaps because you would rather use PP to maintain privacy on this medical issue from your primary insurer.

This would absolutely cover diagnosis and possibly more for PCOS and it's a wide open program, welcoming anyone.

She's an amazing woman and does great work for the area where I live. I am thankful for people like that. It's a shame that Healthy Families is in danger of losing their funding. I was told that "she should run, don't walk to PP because PP is in danger of having their primary care license not-renewed (only because of the federal budget issue and those implications.) So, if you are going to go, go.


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## Tooz (Aug 17, 2009)

deepreflection said:


> With all due respect, I don't mean to bust in on the 'BBW Forum' out of line but this is 100% on the OP's topic.
> 
> I asked a nurse who works for Planned Parenthood and she said that under the Healthy Families program nearly anyone can get care. Those with low income or no-income can get what is basically free insurance/care. Others can use PP for care anyway even if they had a primary insurer. Perhaps because you would rather use PP to maintain privacy on this medical issue from your primary insurer.
> 
> ...



There is no Planned Parenthood near where I live, otherwise I'd go.


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## ABellyGirl (Aug 18, 2009)

Please don't be afraid. If I had taken care of this when I was 24 I would be a whole different woman. And I probably would be able to have children without extreme medical intervention.

If you don't have insurance, go to Planned Parenthood if you can. They are usually equipped to give you an ultrasound and find the characteristic "string of pearls" around your ovaries to start. A small amount of women with PCO don't have them, but its worth a look at.

You can also get your blood tested for high levels of testosterone and your insulin resistance tested IF you and lucky and get a doctor who is not a total jerk. A average doctor will suggest you loose weight. While it helps; weight gain is a symptom not a cause. 

They usually will start you on birth control pills to regulate your periods and lack of progesterone. And some might suggest Metformin to regulate your insulin resistance again IF you and lucky and find a doctor who know PCO.


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## msbard90 (Aug 18, 2009)

because of this post i made a gyn appt.... (crossing my fingers that everythings ok... and if it isn't, crossing my fingers that it can be helped)

... and a huuuuge part of me doesn't want to know...


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## Laura2008 (Aug 18, 2009)

I was diagnosed with PCOS in September of 2008. I was immediately told that if I lost 100 lbs. all my syptoms would go away. Well I've lost 90 lbs. so far and my symptoms are actually worse! I was treated with Metformin for the insulin resistence. It did nothing to alleviate the PCOS syptoms. Then my endo put me on Spironolactone which lowers testosterone levels so it can help with the facial hair and stop the hair loss on the head. Within 2 weeks I started losing my hair in clumps so I stopped taking the Spirno. I've had my thyroid checked 3 times (normal), testosterone was low on the last blood draw, and all the hormones were in the normal range. I still showed insulin resistance and started the Metformin again. I'll give it another try since there isn't many other options it seems. 

I have crappy insurance I buy on my own that covers no office visits. The endocrinologist visit is $204 and she wants to see me monthly for updates. It can be very expensive w/o insurance. They will need to do a trans vaginal ultrasound to check your ovaries for cysts. Another costly procedure. I don't know if there is free help available for the ladies who don't have insurance but I would definitely look into it. My medical bills in the last 12 months have cost me over $7500. I can't qualify for any state assistance. Guess they think I'm rich

Good luck to the ladies and don't be afraid of going to the doctor. Find a female doctor if you don't feel comfortable with a male. My doctor is very supportive (not the same one who told me to lose 100 lbs.) and even though she's expensive I feel she's trying everything she can to treat the PCOS.


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## Tooz (Aug 18, 2009)

ABellyGirl said:


> They usually will start you on birth control pills to regulate your periods and lack of progesterone. And some might suggest Metformin to regulate your insulin resistance again IF you and lucky and find a doctor who know PCO.



See, I'm already ON birth control, which is one of the reasons I don't bother.


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## Sandie_Zitkus (Aug 18, 2009)

Ladies if you have high Testosterone level (a lot of big women do because fat holds estrogen - too much estrogen means too much testosterone) I think you need to be on Aldactone (spironolactone). It will help with water weight and will help balance out your hormones. I went from black wiry think hair on my body to practically no hair except on my head (which got thicker too) in about 2 years of taking this drug. I still take it, and I'm very pleased .

You need to see an Endocrinologist. Most MD's do not understand PCOS. Also, you need your thyroid checked. By the time A Dr. took me seriously I was terribly ill with ALL the symptoms of PCOS and very disgusted.

Or find an herbalist or a Naturopathic Doctor. They can do wonders for you. But do something.


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## Tooz (Aug 18, 2009)

After reading this, I may not have it. My thyroid has been checked and is normal, I don't have Insulin Resistance, and ... I think I'm just unlucky with hair growth, because I don't have like, ridiculous amounts. It's everywhere, but not in like epic proportions. It's not black and wiry, either.

Who knows.


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## Tau (Aug 18, 2009)

CrystalUT11 said:


> I hate to add to the derailing of the thread, but I think I have it as well. The mood swings, the irregular periods, the abnormal body hair (that is SO monotonous and time-consuming to get rid of). But, I do not have insurance right now and cannot go.
> 
> When I was 18, I went to be tested for PCOS. But, instead of testing me, she immediately told me that because I was fat, I needed to lose weight and that it would solve all my problems of irregular periods, hair growth, and mood swings. She tested my blood sugar and then kicked me out the door.
> 
> I'm almost afraid to go somewhere now to be tested because of that horrible experience.



I know its hard. Doctors have a God complex that they've sold very effectively to the rest of the world but here's the thing - they aren't God! So insist. If you feel there is something wrong with you insist that whoever you go see do the necessary tests. Read up before hand, find out what those tests could possibly be and tell the doctor what you want done if they are not coming to the intelligent conclusion themselves. They are also providing a service and if it isn't satisfactory - don't pay! I went to a doctor cos I suspected i was anemic (s'cuse the spelling) and she said my exhaustion was just as a result of my weight, my blood sugar was probably a mess, and that I should lose 50kilos. I said no, I want you to order blood tests for me because you don't have a clue what you're talking about. She did. I was right and she was wrong  I still get a very deep glow of satisfaction from that.


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## ABellyGirl (Aug 20, 2009)

If you do find yourself on birth control pills, Yasmine brand reduces hair growth on your face and helps with the acne.

Only problem with it (depending on the dr.) people with migraines should'nt tke estrogen based pills due to a risk of clots and stroke.

It's too bad; for the the three months I took it, I didn't have to shave as much and my skin was clear.

This is a really good book that tells you EVERYTHING that PCOS is and what is does to your body. 

http://books.google.com/books?id=2b...ult&resnum=3#v=onepage&q=pcos ancient&f=false


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## msbard90 (Aug 27, 2009)

Well, apparently I am PCOS free 
I was put on a different BC method to control my periods better, and get rid of some acne.
Hopefully things work out.


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## thatgirl08 (Aug 27, 2009)

Glad to hear things went well msbard! :]


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## msbard90 (Aug 27, 2009)

hells yeah  

well so i kind of ADHD'ed at the eye doctor and I don't think my new glasses are the right prescription. I guess I'll find out tomorrow. I just hope I didn't waste 150 dollars on new lenses for nothing. FML.


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## thatgirl08 (Aug 27, 2009)

**double post**

EDIT: Ah, that sucks!


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## ThatFatGirl (Aug 27, 2009)

I think there has been some fairly extensive discussion from people with PCOS on this subject already, so you might want to search PCOS threads here to get some additional information. I read all the discussion I can on it because even though I've been treated for it for the last fourteen years, I still feel I don't totally understand it. I attribute this confusion to my doctors too who amazingly, still seem so clueless. I've seen the wrong kind of endo, one who specializes in Diabetes research. He did his best, but I never felt we were on the same page and all of his readings of my test results conflicted with what I was told from other docs. When I switched to a reproductive endocrinologist, things made more sense. I've also been told I had insulin resistance from one doctor and from another, that I did not. Add to the confusion of PCOS that you don't have to be IR to have PCOS. 

If you miss periods, or have painful ones sometimes and have hair growing in places you wish you didn't, I'd definitely start with a gynecologist and then get a recommendation for a good endo from him or her. Your gynecologist should be able to prescribe Aldactone or Spironolactone (Aldactone's generic) for you. If you don't have insurance, WalMart and other pharmacies with $4 generic programs have Spironolactone on their lists. Only 20mg tabs seem to be on the lists I've seen in two states, so you might want to check (walmart.com) and ask your doctor to write the script with that in mind (and know that you may have to pay more for additional tablets). I am on 100 mgs a month, so I'd have to pay $20 on the generic discount programs.

Sandie posted a great link earlier to soulcysters.com. The Polycystic Ovarian Syndrome Association's home page is good for basic, straightforward information, too. I know the thought of PCOS can be confusing and scary, but the unknown and misinformation is often a lot worse.


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## Crystal (Aug 27, 2009)

Thanks! According to that website, I have 4 or 5 of the below symptoms. I really should get this checked out as soon as I have insurance.

_PCOS SymptomsPCOS symptoms tend to start gradually and often start in the early teens.

Frequently PCOS symptoms are mistaken for other medical problems.

With polycystic ovary syndrome you may have only a few symptoms or many symptoms.

The symptoms of PCOS include, but are not limited to the following:

*irregular or no menstrual periods *
acne 
*obesity/weight gain/inability to lose weight *
breathing problems while sleeping 
depression 
*oily skin *
infertility 
skin discolorations 
high cholesterol levels 
elevated blood pressure 
*excess or abnormal hair growth and distribution *
pain in the lower abdomen and pelvis 
multiple ovarian cysts *?*
skin tags _


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## LonesomeKreature (Sep 1, 2009)

I'm 19 and i have PCOS. Not the actual cysts on my ovaries but i have everything else that basically comes along with it, including the oh so wonderful excess body hair/growth. That part also does come from other genes as well but mostly related to PCOS. It was scary beng diagnosed at the at of 17 when you have no clue what is it or what's going to happen and no one can really explain it well. I've been on Metformin for about 2 1/2 years and it's done amazing things for me (especially in combination with birth control). Take care of your bodies and get checked out. It'll be alright.


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## dcoyote (Sep 7, 2009)

I've been diagnosed with PCOS for a few years now. I knew way before that I had it. My mom has it and hypothyroidism it think. One of my aunts just got diagnosed with the thyroid thing too. I used to me on Metformin. I hated it! It made me so sick I couldn't lay on my water bed or walk fast without getting severe motion sickness. When I went to my doctor, she told basically told me to suck it up and take it. I have been reluctant to go back to the doctors for anything at all ever since. My local doctors office is dreadful, but I can't go anywere else.

Symptom wise, it doesn't bother me much. I very rarely menstrate and have a bit of extra hair. As for being fat, I've been at the point of no return without plastic surgery since I was in my preteens.


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## thatgirl08 (Sep 7, 2009)

dcoyote said:


> I've been diagnosed with PCOS for a few years now. I knew way before that I had it. My mom has it and hypothyroidism it think. One of my aunts just got diagnosed with the thyroid thing too. I used to me on Metformin. I hated it! It made me so sick I couldn't lay on my water bed or walk fast without getting severe motion sickness. When I went to my doctor, she told basically told me to suck it up and take it. I have been reluctant to go back to the doctors for anything at all ever since. My local doctors office is dreadful, but I can't go anywere else.
> 
> Symptom wise, it doesn't bother me much. I very rarely menstrate and have a bit of extra hair. As for being fat, I've been at the point of no return without plastic surgery since I was in my preteens.



I'm under the impression thought that it can do internal damage that you may not notice at first so you might want to go back to the doctor again?


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## dcoyote (Sep 7, 2009)

Oh I am aware of that. However, the only docs I can go to don't care. They just want to give me a pill and send me on my way. I don't have the money or oppertunity to do anything about it. I could take the metformin again, but then I have to sleep on the floor and will be unable to chase my baby brother and sister around. If I could treat it, I would.


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## thatgirl08 (Sep 7, 2009)

dcoyote said:


> Oh I am aware of that. However, the only docs I can go to don't care. They just want to give me a pill and send me on my way. I don't have the money or oppertunity to do anything about it. I could take the metformin again, but then I have to sleep on the floor and will be unable to chase my baby brother and sister around. If I could treat it, I would.



Yeah, I understand. As mentioned in this thread, if you have a Planned Parenthood near you they may be able to help you even if you have little or no money and/or no health insurance.


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## gobettiepurple (Apr 28, 2010)

*This post totally opened my eyes - I was diagnosed with PCOS and i have had cysts on my ovaries, but I have been ignoring it for so long because I no longer have insurance. I am going down to the free clinic very soon, because I need to be adult about it and take care of my health. Thanks for posting some very pertinent information ladies! MUAH!*


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## lozonloz (Apr 28, 2010)

dcoyote said:


> Oh I am aware of that. However, the only docs I can go to don't care. They just want to give me a pill and send me on my way. I don't have the money or oppertunity to do anything about it. I could take the metformin again, but then I have to sleep on the floor and will be unable to chase my baby brother and sister around. If I could treat it, I would.



I feel for you. I got diagnosed after bursting cysts when I was 18 (painpainpainPAIN) and my GP put me on the pill, which helped with excess hair growth for awhile until I was taken off it by my next Doc who said I was too fat to take it safely, I might get blood clots. Then I was put on metformin and DEAR GOD I was so ill... I couldnt eat because if I tried I immediately became nautious, I had horriffic stomach cramps... I kept at it for 2 weeks then threw out my pills. When I finally got to see an endo I was leaving the country in a few months and he basically said to wait a year, get another appointment and see what happens in the intervening time. 

Basically because I'm not looking to have kids and so have no fertility issues, the other symptoms arent really considered important. I'm trying to get an appointment with a GP to discuss other options for the hair growth, which is the main issue. I'm running out of freaking wax money.


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## gobettiepurple (Apr 28, 2010)

lozonloz said:


> I'm trying to get an appointment with a GP to discuss other options for the hair growth, which is the main issue. I'm running out of freaking wax money.



*I am right there with you! But didn't the birth control pills help with the hair growth? I was under the impression that that might help, because I want to get birth control for that reason. Yikes, I am tired of waxing and I had hoped the hormones in birth contol would help! thanks for the info!*


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## ThatFatGirl (Apr 28, 2010)

I'm on BC pills, Metformin and Spironolactone for my PCOS symptoms. Sandie mentioned it already up thread and I second it. Spironolactone is key for dealing with hirsutism. In my 12 years of taking it, I've noticed a difference particularly in body hair when I'm on it versus when I'm not. I had dark hair on the back of my forearms, my back.. other places, even my big toes. It really has disappeared. I haven't seen any dark hair there in years. I highly recommend asking your doctor about it. It's usually very cheap too. Also, I believe if/when you get to a point of trying to conceive, you'll have to go off this particular medication.

From Wiki:

Due to its antiandrogen effect, it can also be used to treat hirsutism, and is a common component in hormone therapy for male-to-female transsexual and transgender people. It is also used for treating hair loss and acne in women, and can be used as a topical medication for treatment of male baldness. It is commonly used to treat symptoms of polycystic ovary syndrome (PCOS) such as excess facial hair and acne.


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## gobettiepurple (Apr 28, 2010)

ThatFatGirl said:


> I'm on BC pills, Metformin and Spironolactone for my PCOS symptoms. Sandie mentioned it already up thread and I second it. Spironolactone is key for dealing with hirsutism. In my 12 years of taking it, I've noticed a difference particularly in body hair when I'm on it versus when I'm not. I had dark hair on the back of my forearms, my back.. other places, even my big toes. It really has disappeared. I haven't seen any dark hair there in years. I highly recommend asking your doctor about it. It's usually very cheap too. Also, I believe if/when you get to a point of trying to conceive, you'll have to go off this particular medication.
> 
> From Wiki:
> 
> Due to its antiandrogen effect, it can also be used to treat hirsutism, and is a common component in hormone therapy for male-to-female transsexual and transgender people. It is also used for treating hair loss and acne in women, and can be used as a topical medication for treatment of male baldness. It is commonly used to treat symptoms of polycystic ovary syndrome (PCOS) such as excess facial hair and acne.



*Thank you so much! I will definitely look into it! I have already started with the weight loss process - every doctor I talked to said that losing weight would help and it has, but I am definitely going to talk to my doctor about those medications and a treatment plan.*


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## Tracyarts (Apr 29, 2010)

I just saw my endocrinologist this morning for a followup after increasing my thyroid medicine. And they gave me a sample for a new drug, Victoza. 

When I got diagnosed with PCOS in '89 the only remotely effective treatment offered was birth control pills. In the later '90's when Spironolactone and Metformin came onto the scene, I started taking both of them and have had really good results ever since. About a year and a half ago, I added Byetta injections as well. Well, this new drug, Victoza, is supposed to be better than Byetta. More effective, only injected once a day, don't have to time it with mealtime, and doesn't cause as much nausea as Byetta. It'll be interesting to see how it works. This doctor really knows his stuff and if he's excited about this new drug, then I need to give it a try. 

Tracy


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## lozonloz (Apr 29, 2010)

gobettiepurple said:


> *I am right there with you! But didn't the birth control pills help with the hair growth? I was under the impression that that might help, because I want to get birth control for that reason. Yikes, I am tired of waxing and I had hoped the hormones in birth contol would help! thanks for the info!*



The birth control did help but as I am clinically morbidly obese (though I hate the term) and my family has a history of diabetes (though I am gloriously diabetes free) it means that apparently that type of birth control puts me at risk of blood clots so when I got a new doc she refused to renew the subscription. I wouldnt have minded, she's probably right, except she didnt bother to talk to me about alternatives.

Depending on your weight and family medical history that kind of birth control may work for you.


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## Aurora (Apr 30, 2010)

Thank you all for the wonderful information in this thread. 

I was unofficially diagnosed with PCOS a few years ago when small cysts were seen on my ovaries, but at the time that was the only symptom aside from irregular periods (which we attributed to my use of the depo-provera birth control shot, which turns out may have caused the whole thing, including my pseudotumor cerebri). Since then I've developed some other symptoms.

I'm sick and tired of taking pills though. I'm only 24, and I've got medications for allergies, blood pressure, pseudotumor cerebri, and depression/anxiety. However after reading this thread, I'm wondering if my previous doctors haven't just been treating the symptoms instead of the problem.

I can't take regular birth control because it will make my pseudotumor stuff flare up, but I can take progesterone-only which I'd like to try so I can regulate my periods. I'm going to write down the names of the other drugs you folks have mentioned and bring them to my doctor and see what she says. I'll get my endocrine levels tested and see where I'm at. I can't wait to get this stuff figured out. 

Now excuse me while I go pluck the nasty thick hairs off my chin.


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## gobettiepurple (Apr 30, 2010)

Aurora said:


> Thank you all for the wonderful information in this thread.
> 
> I was unofficially diagnosed with PCOS a few years ago when small cysts were seen on my ovaries, but at the time that was the only symptom aside from irregular periods (which we attributed to my use of the depo-provera birth control shot, which turns out may have caused the whole thing, including my pseudotumor cerebri). Since then I've developed some other symptoms.
> 
> ...



*My sister also has pseudotumor cerebri . . . she has lost weight and it helped, but she is still taking medication. They think after 20 more pounds that she will be without medication - she is only taking half a pill now, but they are still expensive!

I had a similar development of my PCOS symptoms, they found the cysts first and besides irregular periods [which I have always had] those were my only symtoms. It is only now, a few years later, that more symptoms are developing. I think I will also get my endocrine levels checked too!

Its great to have people that understand!*


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## Aurora (Apr 30, 2010)

gobettiepurple said:


> *My sister also has pseudotumor cerebri . . . she has lost weight and it helped, but she is still taking medication. They think after 20 more pounds that she will be without medication - she is only taking half a pill now, but they are still expensive!
> 
> I had a similar development of my PCOS symptoms, they found the cysts first and besides irregular periods [which I have always had] those were my only symtoms. It is only now, a few years later, that more symptoms are developing. I think I will also get my endocrine levels checked too!
> 
> Its great to have people that understand!*



I'm glad your sister is doing well! I was actually taken of my pseudotumor meds 5 months after all my symptoms had disappeared, but almost two years later the optic nerve pressure came back (but I was bad and hadn't been getting it checked up on), so I had to do the whole spinal tap and all that again. Still symptom free, but losing weight too. Like I say, I'm really sick of taking pills! 

And yeah, it's definitely great to have so many people who understand. It's like a support group but without the awkward silences lol.


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## emmandale (May 1, 2010)

I have PCOS and first sought treatment from a Reproductive Endocrinologist even though I wasn't trying to get pregnant at the time. I currently take 1500mg of Metformin XR every day. I also take Birth Control pills to help prevent cysts from developing on my ovaries. 

When I was ready for motherhood I was able to able to conceive my two children with just the help of the Metformin regulating my cycles. Before I started Metformin I would only get a period every other month. My doctor also had me do basal body temperature charting to find out my fertile time. If I had not been successful with just the Metformin and charting I would have next gone on Clomid. 

I did have to be on progesterone suppositories for the first three months of each pregnancy due to my low progesterone levels which is common with women with PCOS. I highly recommend anyone that is able to go see a reproductive endocrinologist rather than just a ob/gyn.


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## truebebeblue (May 1, 2010)

At my heaviest I was misdiagnosed with PCOS and then tested later.
I had every symptom but when my hormone levels came back only one that was out of whack was my follicle stimulating hormone.
I also am hypothyroid. I truly think that my problems were caused by how heavy I was causing a hormonal imbalance. fat stores and produces estrogen.
I had horrible menstrual flooding(eventual needing a d&c to remove thickened endometrium),ovarian cysts,hirsutism, dark skin in folds and neck area,Diabetes,high blood pressure the list goes on....It's all gone now(minus facial hair) and I am pregnant. The endocrinologist guess that my FSH would regulate with weight loss and he was right. I know it is scary to get diagnosed with something but it is awesome to KNOW what is going on instead of just guessing.There was a point after I was diagnosed with thyroid disease and diabetes where i was like OK NO MORE DIAGNOSIS. I hated being this list of syndromes and diseases! Anyway,get the answers because you cannot move forward until that is figured out.


True


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## gobettiepurple (May 1, 2010)

truebebeblue said:


> At my heaviest I was misdiagnosed with PCOS and then tested later.
> I had every symptom but when my hormone levels came back only one that was out of whack was my follicle stimulating hormone.
> I also am hypothyroid. I truly think that my problems were caused by how heavy I was causing a hormonal imbalance. fat stores and produces estrogen.
> I had horrible menstrual flooding(eventual needing a d&c to remove thickened endometrium),ovarian cysts,hirsutism, dark skin in folds and neck area,Diabetes,high blood pressure the list goes on....It's all gone now(minus facial hair) and I am pregnant. The endocrinologist guess that my FSH would regulate with weight loss and he was right. I know it is scary to get diagnosed with something but it is awesome to KNOW what is going on instead of just guessing.There was a point after I was diagnosed with thyroid disease and diabetes where i was like OK NO MORE DIAGNOSIS. I hated being this list of syndromes and diseases! Anyway,get the answers because you cannot move forward until that is figured out.
> ...



*You are totally right - I need to be an adult and stop pretending it will just go away. I lost weight and the problem is still the same if not worse. As soon as I get back on my Dad's health insurance, I am going to the endocrinologist! I don't care if my primary care physician says "lose weight" - I am so tired of hearing that from doctors! lol . . . thank you for your input everyone, it is truly helpful!*


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## Weeze (May 10, 2010)

Yeah... I need to get over my fear of the doctor. I haven't had a real period since July.


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## Lamia (May 16, 2010)

I've never been to the gyn. I rarely have periods and if I do they're either spotty or ax murderer flow. I've asked doctors about missing periods or no period and been told it's normal when you're fat to have abnormal periods. The last doctor didn't even ask about my female bits. He did ask me if I wanted to have gastic bypass which I kindly declined. 
I know I need to get checked out. My mother, sister and aunt have all had uteran cancer.


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