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  #1   ^
Old Fri, Oct-11-02, 17:28
tamarian's Avatar
tamarian tamarian is offline
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Plan: Atkins/PP/BFL
Stats: 400/223/200 Male 5 ft 11
BF:37%/17%/12%
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Location: Ottawa, ON
Thumbs up PCOS: Women Can Fight an Almost Secret Syndrome

Women Can Fight an Almost Secret Syndrome
By JANE E. BRODY

It may seem hard to believe that a disorder first identified nearly 70 years ago that affects as many as 10 percent of women would still be unrecognized by many doctors and in most of those who have it.

But that is the case with a condition called polycystic ovary syndrome, or PCOS, a bodywide metabolic disorder characterized by abnormal hormone levels that can result in distressing and sometimes life-threatening problems, including infertility, obesity, acne, excessive facial and body hair, diabetes, heart disease and uterine cancer.

The syndrome was first described in 1935 by two American gynecologists, Dr. Irving Stein and Dr. Michael Leventhal, and until recently it was known as the Stein-Leventhal syndrome. It was renamed after tests revealed that in many women with the syndrome, the ovaries are covered with beadlike cysts, representing eggs that failed to mature fully and to be released, as would happen in normal ovulation.

Typically, it can take years and visits to many specialists before a woman with PCOS (pronounced PEE-kose) receives a correct diagnosis, followed by treatment that can relieve symptoms and reduce the risk of serious complications.

In fact, many women first learn the cause of their diverse symptoms when they fail to become pregnant and consult infertility specialists.

To be sure, PCOS is hard to diagnose, with symptoms varying widely. And, out of embarrassment, some women fail to tell their doctors what is bothering them. Even when the symptoms are accurately conveyed, women are often told that the symptoms will go away, that their symptoms are normal and that the problems are caused by stress. PCOS symptoms can start in adolescence but may be noticed any time in a woman's reproductive life.

Hormones in Disarray

The body's network of hormones is a finely tuned system, and when one or more is out of balance with the others, bodywide havoc can result.

With PCOS, there is an imbalance of two pituitary hormones, FSH and LH, which normally stimulate the ovaries to mature and release eggs and form a progesterone-producing mass, the corpus luteum. It in turn sustains an early pregnancy or, if no egg is fertilized, results in menstruation.

But when FSH and LH are out of whack, a woman may not ovulate or menstruate regularly, if at all. This makes PCOS a leading cause of infertility, possibly accounting for as many as half of all cases of female infertility.

In addition, if a woman fails to menstruate regularly, the uterine lining becomes overstimulated by estrogen, which can lead to endometrial cancer.

But an imbalance of reproductive hormones is only part of the problem. Many women with PCOS also have excessive amounts of insulin in their blood because of the resistance of their cells to this hormone.

Insulin's primary task is to maintain a normal blood level of glucose by moving this sugar, produced by the digestion of carbohydrates, into cells that use it for energy. But insulin also fosters the storage of fats, and people with high blood levels of this hormone often gain weight on a normal diet and have a great deal of difficulty losing weight.

Half or more of women with PCOS become obese. When insulin resistance is untreated, the continual pressure on the pancreas to overproduce insulin can lead to Type 2 diabetes.

Even this is not the end of the story. In women with PCOS, blood levels of testosterone are also likely to be elevated, resulting in distressing cosmetic symptoms, like acne that will not respond well to ordinary treatments; dark, coarse facial hair; hair on the abdomen and chest; and male-pattern balding.

Other symptoms include dark overgrown skin at the nape of the neck and around the armpits, which are marks of insulin resistance, and high blood levels of heart-damaging triglycerides and low levels of protective high-density lipoprotein cholesterol, greatly increasing the risk of heart disease and stroke.

PCOS tends to run in families, and there is some evidence that men may also be affected. So when a woman learns she has this condition, it makes sense to test others in the family for hormonal irregularities.

Diagnosis and Treatment
Because of the varied nature of PCOS and because its symptoms may also apply to other serious disorders, like tumors, several procedures may be needed to gain a correct diagnosis. The work-up is best done by an endocrinologist familiar with hormonal disturbances.

A woman should be tested for blood levels of prolactin, thyroid-stimulating hormone, LH and FSH, progesterone, testosterone and another male hormone Dheas (dehydroepiandrosterone sulfate), blood lipids (the two forms of cholesterol and triglycerides), insulin and her ability to process blood glucose (via a glucose tolerance test).

The doctor may also recommend a transvaginal ultrasound examination to reveal ovarian enlargement or cysts or overgrowth of the uterine lining. An endometrial biopsy may be performed to check for cancer.

With a syndrome so diverse, the treatments are also varied. Some trial and error may be involved since different approaches work better in some women than in others.

Many women are helped by birth control pills, particularly the combination oral contraceptives that contain low-androgenic progestins, like Ortho-Cyclen and Ovulen. This regulates the menstrual cycle, suppresses FSH and LH release, lowers testosterone levels (relieving symptoms like acne and excess hair growth), raises the level of the protective cholesterol and protects the uterine lining.

If a woman with PCOS then wishes to become pregnant, she is advised to stop the pill and immediately begin trying to conceive before her hormone levels become abnormal again. The ovulation-stimulating drug Clomid is also often prescribed in such cases.

Those found to be insulin resistant are helped by the insulin-sensitizing medications used to treat Type 2 diabetes, most often metformin (Glucophage) or the newer drugs, pioglitazone (Actos) and rosiglitazone (Avandia).

Treatment of insulin resistance can help a woman who is trying to shed excess weight.

Many women with PCOS have found that in addition to regular exercise, a diet relatively low in carbohydrates helps control weight by reducing the level of insulin the body must produce to process glucose.

But since women with PCOS are already at risk of developing heart disease, overconsuming saturated fats and cholesterol is unwise. Focus instead on[ b]lean meats, fish and poultry[/b] and low-fat dairy products with lots of nonstarchy vegetables and low-calorie (low sugar) fruits, like berries and cantaloupe.

Eat grain products in modest amounts and preferably unrefined — whole wheat breads and cereals, oats and brown rice.

The Emotional Connection

Depression, embarrassment, discouragement, stress, anxiety and feelings of hopelessness are not uncommon among women with PCOS, especially before they receive proper diagnostic work-ups and effective treatments. Many find help in support groups, sometimes through chapters of the Polycystic Ovarian Syndrome Association (on the Web at pcosupport.org). The group can also be reached at P.O. Box 80517, Portland, Ore. 97280 or by phone at 877-775-PCOS (877-755-7267).

A new book, "Living With PCOS" (Addicus Books, $14.95), by Angela Best-Boss and Evelina Weidman Sterling with Dr. Richard S. Legro, contains inspiring stories from affected women and information about diagnosis and treatment.

http://www.nytimes.com/2002/10/08/h....html?tntemail0
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  #2   ^
Old Fri, Oct-11-02, 17:30
tamarian's Avatar
tamarian tamarian is offline
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Posts: 19,570
 
Plan: Atkins/PP/BFL
Stats: 400/223/200 Male 5 ft 11
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Location: Ottawa, ON
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The same author have written some scathing reviews of low-carb diets in the last few months

Wa'il
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  #3   ^
Old Sat, Oct-12-02, 15:07
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DebPenny DebPenny is offline
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Plan: TSP/PPLP/low-cal/My own
Stats: 250/209/150 Female 63.5 inches
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Location: Sacramento, CA
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Thanks for this, Wa'il. I have suffered from PCOS since puberty. And until my last couple doctors, I was always told "just lose weight and you'll be fine" and treated like there was something wrong with Me that was making me like this.

Now that I'm on low-carb and with the help of a good doctor and this forum, I think I finally am getting "fine."

What still twists my tail is that doctors have known about this for so long and they didn't even try to find out if PCOS was my problem.

It's also nice to see someone who has been lambasting low-carb change their tune.

;-Deb
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  #4   ^
Old Sat, Oct-12-02, 16:26
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Lisa N Lisa N is offline
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Plan: Bernstein Diabetes Soluti
Stats: 260/-/145 Female 5' 3"
BF:
Progress: 63%
Location: Michigan
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Deb...

My experience has pretty much been the same as yours. I've probably had PCOS since puberty and until I got married and started trying to start a family, was always told that I should just eat less and lose weight which, of course, didn't work. None of the doctors did any testing (other than thyroid) to find out if there was some underlying medical problem for my irregular periods and weight gain. One doctor even told me that my only problem was what he termed "overactive hand to mouth syndrome" and that all I needed to do was eat less and I'd be fine, then stuck me on the totally wrong (I found that out later) type of birth control to regulate my periods which resulted in my ovaries shutting down completely. It's only by some miracle that they started functioning again and I was able to conceive.
Just goes to show you how deeply ingrained prejudice against the obese is, even among doctors who should know better. Instead of trying to figure out WHY you're fat, they apply the sterotype of the obese person sitting on the couch watching TV all day and eating 2 lbs. of chocolate and an entire bag of potato chips at a time and say, "Of course you're fat...you eat too much!"
Even when I was eating 1,200 calories a day and not losing weight, the doctor wouldn't believe me and insisted that I had to be cheating. Needless to say, I never went back to him.
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  #5   ^
Old Sun, Oct-13-02, 09:37
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DDMariana DDMariana is offline
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Plan: Atkins
Stats: 196/179/150
BF:Ugh!
Progress: 37%
Location: Vacaville, California
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Thanks so much for posting some timely info on PCOS. This has been a thorn in my side nearly all my life. I finally had to dig up my own medical research, collect my symptoms and find a doctor who would listen and respond - not an easy task. Finally, a woman gynocologist formally diagnosed me, ran all the appropriate tests and began to keep an eye on me - (then I lost my benefits...and her!)

Now I am my own watchdog, and can console others who have been stigmatized by symptoms beyond their control. One thing that has especially helped me - and was a great piece of positve medical news - is realizing that PCOS is related to insulin and glucose processing, and that the hunger and obesity (and bingeing) problems are very much a part of this syndrome.

I'm completely in control of my symptoms now, after years of dieting, electrolysis, dermatologists, etc. I took them on one at a time, thankfully without a lot of medications, and began to fight back hard. My skin looks great today, and the LC WOE maintains a stable condition for me...no more migraines unless I cheat, a healthier blood condition for hair loss and growth, etc. The depression is still treated with meds, but that is the basis for my being able to be in charge of my own health.

Any woman who has battled this thing over the years can tell you what discouragement is like! I appreciate the word getting out - through the usual pipeline: women to women. There is relief out there now, and plenty of people to listen and help.

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  #6   ^
Old Sun, Oct-13-02, 10:07
tracey(uk) tracey(uk) is offline
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Posts: 3
 
Plan: atkins
Stats: 200/156/119
BF:
Progress: 54%
Location: uk
Unhappy pcos

Lately I have been feeling really low about this horrible horrible condition. I keep on thinking that the only way anyone will sit up and take any notice is when someone kills themselves because they cannot live with it anymore.

I cant believe the medical proffession have known about it for 70 years and there's still no cure, it sucks!

Surely there is something that can be done in this day and age. We are seeing more cures for cancer, for Aids, people are being given sight, we can fertilise eggs in test tubes and clone animals yet PCOS is being over looked (or so it seems).

I really dont even go to see my G.P unless I have to and then I get myself all worked up about the whole visit. Its like pulling teeth to me because I know it will be a negative experience. Every Doctor I've ever met has dismissed the PCOS as a condition you have to live with (hello I know that already) and they always say lose weight. If I go to surgery with ear ache they say lose weight.

I want to be rude sometimes and say 'kiss my ass' but I dont I politely take the insults and walk away. Am I hero? No way Im trying to cope day to day being trapped inside a body that I hate and despise.

Doctors ought to start thinking about the phsycological aspects of this 'nightmare' condition. I dont look in the mirror unless I have to, I cry when the razor blade tugs on the hair on my face and I'm so so tired soemtimes (I could just take to my bed).

I regard myself as relatively intelligent yet time and time again I've been overlooked for promotion and I've let opportunity pass me by time and again. My confidence and self esteem are at an all time low at the moment. My life plans seem so unattainable.

Am I feeling sorry for myself ? I certainly am. I am angry and frustrated and yes its one of my bad days (I usually take the hair off my face and try and face the world as best I can).

I want to turn this negative experience into something positive sadly the only way I can ever see that happening is if a miracle happened and a cure is found.

TO ALL YOU CLEVER MEDICAL PEOPLE OUT THERE ...... LISTEN...... ITS TIME PCOS WAS ACKNOWLEDGED BY ALL OF YOU..... START LOOKING FOR A CURE BEFORE IT BECOMES AN EPEDEMIC!
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  #7   ^
Old Sun, Oct-13-02, 10:26
DDMariana's Avatar
DDMariana DDMariana is offline
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Posts: 2,337
 
Plan: Atkins
Stats: 196/179/150
BF:Ugh!
Progress: 37%
Location: Vacaville, California
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Tracey,

I feel your posting right to the heart! Boy, have I said those same words. Just a couple of thoughts I have...

First, the "laser hair removal" is actually officially approved and DOES remove the hair permanently. It takes a few sessions, is not cheap (over here, about 100. per "section" - but look around, that was at a dermatologists office), but after the third cycle of hair growth, the follicle will not regrow. After years of electrolysis, at $30. a session, twice a week sometimes, I would be HAPPY to pay a few hundred, have no burns or scars, and know that I'm on the way to a real solution.

It's terribly depressing to deal with that particular part of PCOS, especially when you start LOSING it on your head!! What a cruel irony!!

The weight problem is in itself an issue, but the underlying symptom for me was clinical depression and the appropriate medication needed to balance out THOSE chemicals first. I know the debate about antidepressants - my background is in Psychology, and I'm in school now for social work - and I know how so many are medicated unnecessarily. But when it's needed, it works. It was what allowed me to stabilize, and take on one piece of this puzzle at a time.

Now, my weight and body image are at a place where I can "deal" with it - although I'm not happy with it. (That's attitude change.) My facial hair problem is nearly gone, and my skin looks great now. How? Some artificial means...but mostly, good nutrition first, medicate from the inside out, good skin care, WATER, WATER, WATER, keeping on a LC diet for insulin control...and getting the depression treated. Before that, nothing matters. My stats say I'm starting at 195, but it was 260 before that...I've been there. Women with PCOS do NOT have it easy. And you know as well as I do, the medical community would have this solved in a heartbeat if it were a MALE disease!

We women have to take it upon ourselves to educate the doctors as to what works... and be there for each other to alleviate the negative self-image feelings we have to deal with sometimes.

I appreciate your post...take care!

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  #8   ^
Old Sun, Oct-13-02, 10:48
tracey(uk) tracey(uk) is offline
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Posts: 3
 
Plan: atkins
Stats: 200/156/119
BF:
Progress: 54%
Location: uk
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Thank you so much for your reply. I really didn't expect it.

As you can no doubt guess 'it's one of my bad days'. As I read your reply I found myself nodding and talking to the P.C. I know its crazy but until you hear how other women are suffering and coping you feel so isolated dont you .... so alone.

I know all women with PCOS must say 'why me' but because I am arguing with my fiance all the time (a lot of the time because of my low self esteem - though not all) and because we have stopped using contraception for over a year and nothing has happened. I feel worse.

Getting pregant was easy for me the first time around (15 years ago) and I am so frustrated that it isn't 'happening' this time around.

What do you do when your body lets you down ? I feel like putting on one of those sandwhich boards which says 'give me a break I have PCOS', not because I want pity (that would be worse) just so people will cut me some slack, people judge you on how you look, on what you achieve. I keep being asked when Im going to have another, what do I say in response to that people dont realise the pain I feel so I just smile and make my excuses or tell the truth (depending on who asks).

Im sorry Im getting obsessive here ........ Im having a bad day .... next time I talk to you I promise I will try and be a bit more fun.

Thank you a gain for your reply ...... you are a star!
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  #9   ^
Old Sun, Oct-13-02, 15:23
silkenluck silkenluck is offline
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Posts: 21
 
Plan: Modified diabetic diet
Stats: 245/223/155
BF:31%
Progress: 24%
Location: Midwest USA
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Quote:
Originally posted by Lisa N
Deb...

My experience has pretty much been the same as yours. I've probably had PCOS since puberty and until I got married and started trying to start a family, was always told that I should just eat less and lose weight which, of course, didn't work. None of the doctors did any testing (other than thyroid) to find out if there was some underlying medical problem for my irregular periods and weight gain. One doctor even told me that my only problem was what he termed "overactive hand to mouth syndrome" and that all I needed to do was eat less and I'd be fine, then stuck me on the totally wrong (I found that out later) type of birth control to regulate my periods which resulted in my ovaries shutting down completely. It's only by some miracle that they started functioning again and I was able to conceive.
Just goes to show you how deeply ingrained prejudice against the obese is, even among doctors who should know better. Instead of trying to figure out WHY you're fat, they apply the sterotype of the obese person sitting on the couch watching TV all day and eating 2 lbs. of chocolate and an entire bag of potato chips at a time and say, "Of course you're fat...you eat too much!"
Even when I was eating 1,200 calories a day and not losing weight, the doctor wouldn't believe me and insisted that I had to be cheating. Needless to say, I never went back to him.

I had a very similar experience, except sevearl doctors over several years all said pretty much the same thing. Eventually i got to the point where I actually believed them - I must be cheating SOMEHOW - eating more than I remember and just psychologically blocking it out. Maybe it WAS just stress, or maybe it WAS my fault for not having enough energy to exercise more. After about 8 years of that I stopped asking anymore. Until I moved to the US and got some decent doctors (and decent health insurance too of course). Now I'm finally asking questions again about all of the things that I should have insisted on answers for YEARS ago.

I have moments when I wonder if this was a 'male' disease would it be so underdiagnosed? Wouldn't more be known about it? I know that's a horrible thing to think - but there are days when I really wonder. :/
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  #10   ^
Old Sun, Oct-13-02, 20:19
DebPenny's Avatar
DebPenny DebPenny is offline
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Posts: 1,514
 
Plan: TSP/PPLP/low-cal/My own
Stats: 250/209/150 Female 63.5 inches
BF:
Progress: 41%
Location: Sacramento, CA
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Well, pretty early on I stopped going to see doctors and also stopped dieting. I went for years without having periods too.

I think that the worst thing that happens to us women with PCOS is that we are made to feel that it's our behavior that's causing our problem. We are treated like failures and degraded by the people who are supposed to be helping us.

When I finally found a doctor who told me I had PCOS and that my weight was not the cause but a symptom, I felt like I had been let out of jail. However, when she told me that I don't ovulate and so could not get pregnant, I was relieved . I never have wanted kids.

At one point I was also given by a nurse who thought she was being helpful an excerpt from a book that said that PCOS is caused by a woman's sexual ambivalence and that she could cure herself by getting her head straight, pun intended. Talk about degrading, unfeeling, and totally wrong!

So, I guess this thread is turning into a rant about unfeeling doctors, but like the rest of you, I have years and years of hurt still bubbling to the surface.

;-Deb
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  #11   ^
Old Mon, Oct-14-02, 11:33
jwperu jwperu is offline
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Plan: atkins
Stats: 175/148/135
BF:
Progress: 68%
Location: Wyoming
Lightbulb PCOS and insuulin resistance

"Hum Reprod 2002 Aug;17(8):1950-3 (ISSN: 0268-1161)
Nestler JE
Division of Endocrinology and Metabolism, Medical College of Virginia, Virginia Commonwealth University, Richmond, VA 23298, USA. E-mail: nestler~hsc.vcu.edu.
Insulin resistance is a prominent feature of polycystic ovarian syndrome (PCOS), and women with the disorder are at increased risk for the development of other diseases that have been linked to insulin resistance-namely, type 2 diabetes and cardiovascular disease. This association between insulin resistance and PCOS must guide the chronic management of the disorder, and accumulating evidence suggests that administration of insulin-sensitizing drugs to individuals at high risk for type 2 diabetes decreases the rate of conversion to overt disease. In contrast, limited evidence exists to suggest that oral contraceptive pills-the currently standard therapy for PCOS-may actually decrease insulin sensitivity and induce impaired glucose tolerance in women with PCOS. Hence, PCOS should be regarded as a general health issue and the use of insulin-sensitizing drugs such as metformin should be considered for the prevention of type 2 diabetes>"
The important point, IMHO, is that PCO is most likely a variant and manifestaion of insluin resistance. These disorders also described as; syndrome X, metabolic syndrome, and metabolic disease X, are now being recognized by physicians as a probable etiology for many diseases of Western society such as diabetes, HBP, heart disease, and obesity. They seem also to be very much an epidemic releated to our diet of refined and glycemic carbohydrates. Diet guru's who have promoted all forms of carbohydrates at the expense of fats and protiens now are being forced to rethink their previous postitions. Physicians did not treat PCO well in the past because the true etiology (insulin resistance) was not understood. Therefore treatments consisted of symptomatic (regluate menses with OCP's, weight loss, treatments for hirsuitism ) rather than treating the most likely cause of insulin resistance. (The same may also be said for other manifestataions of insulin resistance such as diabetes, HBP, heart disease and obesity.) I predict that we will see much better treatments for diseases of insulin resistance, now that there is better physician education on this disorder. Sadly, some physicians will not accept new information, and patients may miss promising new treatment.
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