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SCHNOOGLES's Photo SCHNOOGLES Posts: 3,045
1/23/08 4:28 P

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I was first diagnosed at 18 (I'm 35 now) and given birth control pills. From what I read and from what I hear from other patients, PCOS sufferers don't do well on BC pills long term.

At 23, a doc took me off BC pills because my cholesterol and blood pressure were elevated. My weight skyrocketed up from there. When I complained that my symptoms (not just weight) had gotten much worse, she gave me a dismissive "Oh, when you're ready to have kids, we'll just give you fertility drugs." I didn't like that answer.

I checked out some PCOS support groups in my area, but they all seemed to be targeted toward older women (30s+) who hadn't been diagnosed with PCOS until they tried to have kids. Instead of being PCOS support groups, they seemed to be infertility support groups. Seemed like no one at the time was concerned that PCOS would lead to further health complications down the road. I disagreed.

Fortunately, in my mid-twenties, I found a doctor who agreed with me and put me on Metformin. That helped tremendously. (Until childbirth knocked my thyroid out of commission, but that's another story.) On Metformin, I lost the extra weight, my cholesterol and BP went back to normal, my skin cleared up, and my facial hair problem became a little less aggravating. And because I believed the doctor who said that I would need fertility drugs, I became accidentally pregnant at age 32. (Best accident that ever happened to me!)

I think the word is getting out among the medical community to screen for PCOS at a younger age, and to focus more on preventing future complications that untreated PCOS can lead to, like heart disease, cancer, diabetes, and endometriosis (just to name a few). It's no longer viewed as just a fertility problem among more progressive healthcare providers and support groups. At least that's been my observation in the changes I've seen in my care over the past 17 years.

However, I know that it takes more than 17 years to change everyone's attitude. I'm saddened to hear that there are still doctors out there who think BC pills and fertility drugs are the only options. I'm disappointed to hear that there are support groups who focus only on the infertility side and ignore the other repercussions of PCOS. (Just call your group a PCOS infertility support group if that's the case - there's nothing wrong with that.)

The good news is that there is much more information available to the average person than there was 17 years ago. www.pcosupport.org is a great place to start.

Good luck! Good for you for taking control of your care early on. Let us know how you're doing.

Gluten-free since 5/27/2008!


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BECCA200 Posts: 18
1/21/08 10:38 A

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I was probably about 15 when I was diagnosed with Stein Leventhol Syndrome, that is the old name for PCOS. I am now 32 and JUST LEARNING that PCOS means insulin resistance. So, maybe it's possible that most of the older women have just gotten to a certain point of frustration with the medical community that they are more vocal about it.

When I was younger it was never mentioned to me that women with PCOS are more succeptible to diabetes, heart disease, etc. I think that the doctors only saw it as a stumbling block to a person getting pregnant and, since most adults are not fans of teen pregnancy, the answer was to just throw birth control at the problem.

So, it's not that it's that this syndrome comes on later in life (like menopause or something) it's just that we're figuring it out and demanding help a little later.

You are fortunate to have so much information around you. But, I think that the recipe is roughly the same for all of us. Eat whole foods and get plenty of exercise. I have had the most success in the past with regular exercise. I just didn't realize how important it is for me specifically. Some people can eat whatever they want and be sedentary without any physical concequences (outwardly anyway). But for us, it has to be as habitual as brushing your teeth. Or, as you can see from MY weight ticker things can get a little out of control.

Anyway, I could definitley go on but hopefully with all of this great information around you can avoid any bit weight/health issues in the future!

Just know that you are not the only young person with this problem to deal with. As you can tell from reading the posts, many teenagers and beyond are effected by PCOS...they probably just aren't talking about it.

 
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AFRIEDRICHS's Photo AFRIEDRICHS Posts: 226
1/20/08 11:30 P

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I have to agree with what most have said here. I don't feel that the info out there are for 'older' PCOSers. I was diagnosed when I was 26ish and am now almost 30. I think you'll see more woman talk about their issues or what they've tried because of the consception side of things, but I too think it's the same for all of us and that there is no 1 answer unfortunately.

I think the longer you deal with it the more open you are about talking about the problems with PCOS and have tried more options and maybe that's why you feel that it's mostly older PCOSers and such.

I know my symptoms where less and easier to control when I was younger. Even though I was 26 when I was finally diagnosed, I think I was showing signs at 17/18, but bc took care of it, so the drs just sent me on my way with a Rx.

I hope you find the help and resources you're looking for. I think it comes down to diet, exercise, and over all health no matter your age!

Amy ;-)

Even small improvements are better then no improvements!

There really isn't anything that's IMPOSSIBLE, it's just how much work YOU WANT to stick into it!


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LISAP916's Photo LISAP916 Posts: 331
1/19/08 12:44 P

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I don't think the treatment methods or advice given would be any different for a 23yo than for a 33yo than for a 43yo.

Personally, I'm not trying to conceive and I've already decided I won't be trying to conceive in my lifetime. A lot of the information out there is geared to improving the symptoms so a woman COULD conceive - that doesn't mean that they won't improved MY symptoms as well even though conception doesn't apply to me.

Does that make sense?

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KRISTEC's Photo KRISTEC Posts: 7,921
1/19/08 10:45 A

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I think the medical advice and general "lose weight, eat right and exercise" advise apply to all. Perhaps women who ARE worried about getting pregnant are stressed more because that is the hardest aspect of PCOS for many.

Kriste's weekly goals: ST 3X; cardio 2000 calories burned; eat better


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JUPITERSTAR's Photo JUPITERSTAR SparkPoints: (21,641)
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1/19/08 2:40 A

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I think that because from what I personally have seen, it IS all for older women. Every time I look for advice on living with PCOS I come across things aimed at women in their thirties or older. If you know of something that is supposed to apply to all sufferers, PLEASE let me know?

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LUVHUMMINGBIRDS's Photo LUVHUMMINGBIRDS Posts: 3,050
1/18/08 8:21 P

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I don't understand why you think all the info is for older women. Most women in here were diagnosed when they were in their teens and early twenty's. I was telling someone the other day that she was the one of the few other ladies that I had seen that was diagnosed late like I was. A lot of them are older now because they have been living with PCOS for years. I think most of the info and treatment is the same for all ages with some changes for if you are trying to have kids. Part of the problem with PCOS is not everyone has all the symptoms. There is no one way to treat it. Part of it also is even doctors don't always understand it or know what to do with it.

For me, I wasn't diagnosed until I was 40. I didn't have any symptoms really until I hit my early 30's. I had been bugging doctors for years with no results. I think they blew me off because I did have kids and maybe wasn't a typical case. I have never had cysts. I have had 3 kids all naturally conceived. I have the IR, the hair loss on head and extra in other places and the elevated testosterone. I am on Met and spiro.. I was even put on BCP to control my cycle even though I had my tubes tied after my 3rd baby(before I was diagnosed with PCOS) I didn't like being on them since I didn't need them for the BC part.. I went off but am going to have to come up with something for my cycles again. The other option I was given was an IUD which scares me.

I think that it's alot of trial and error to find what is going to work for you. And I think that in some cases what was working stops and you have to try something else. You could ask 10 different women in here what they are doing and you would get ten different answers and what they are doing is working for THEM but might not for someone else...

Hope you find some of the answers you are looking for.

Cindy




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KRISTEC's Photo KRISTEC Posts: 7,921
1/18/08 7:26 P

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young Ladies :) (I don't qualify anymore!)- I had PCOS as soon as my periods started (summer before 8th grade) - but I wasn't diagnosed until going through infertility, and I have never taken medication for it. My periods ARE better since losing weight and exercising though! My PMS is often better too! I do think it helps!

Kriste's weekly goals: ST 3X; cardio 2000 calories burned; eat better


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BEKAH_LYNN's Photo BEKAH_LYNN Posts: 930
1/18/08 4:52 P

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Hey! I know how you feel! I'll be 23 in March. It is really odd to be so young with PCOS when so many seem so much older than myself. I want a family some day, so I want to solve my PCOS problem. That is why I'm here at Sparkpeople. My doctor told me that a weight loss could "jump start" my system and fix the problem, but so many people are telling me that weight loss hasn't helped them yet. That is kind of scary. I wish I had some better advice for you, but just keep in there with what you are doing. Like yourself, I'm searching for the answers too. I'm on birth control right now and also Metformin for the sugar control. I'm slowly loosing weight and I just hope it is enough to make a better future for myself! Good luck to you! You're not alone in your search for answers to PCOS at a young age.

Beks

"Obstacles are mental. Defeat the mind and you will conquer the body."-Beks

"In life, many things will catch your eye, but only a few will catch your heart...pursue those."
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KATAMUS's Photo KATAMUS Posts: 1,265
1/18/08 4:25 P

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Hi there. I'm afraid I don't have any good resources for you (let me know if you find any) I was diagnosed with PCOS when I was 14 and have been on birth control ever since (which my doc says is OK but i'm not so sure)so I know what you mean. My doctor just keep saying that when i get done "Trying" to have kids I can "just" have a hysterectomy (which scares the hell out of me btw). Sorry I don't have any good info for you but at least we now know we're not an isolated case. =) Really do let me know if you find any good resources. Feel free to drop me a line any time.

TTFN
Kate

Visit my blog at,
lightlivingfamily.blogspot.com/


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JUPITERSTAR's Photo JUPITERSTAR SparkPoints: (21,641)
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1/18/08 4:20 P

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I just need a bit of help...it seems like all the resources out there for people with PCOS are for women who are getting into middle age or are at least old enough to have had multiple children. I seem to be kind of a weird case. I've been a textbook PCOS case pretty much since hitting puberty and while it took them until I was eighteen or so to diagnose it, apparently that is still really young. I just feel like there aren't any resources or advice available for me out there because I'm still so young (I'll be twenty-three in a week), and even the stuff my doctors get to me is pretty much all for women older than me...so...I don't know, I'm not even sure what I'm asking for here, but I'm worried I'm not getting the proper treatment just because other than having a regular period for the first time in my life over the last couple of years, I haven't seen or felt any changes since being diagnosed, and I'm not sure if the healthy and weight loss advice I've been given is going to work since I'm not within the usual age range for PCOS sufferers...

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