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POLYCYSTIC OVARY SYNDROME
by Geoffrey Redmond, MD

Quick Reference
Making PCOS less confusing
The frustration of PCOS
The four (or five) features of PCOS
Who should have a workup for PCOS?
There are as many forms of PCOS as there are women with the condition
How bad is PCOS?
Not everyone who has been told she has PCOS really has it
What happens in PCOS: Insulin resistance, the newest piece of the puzzle
What does IR do?
Lab tests and PCOS
I was told my tests are normal, what does that mean?
Ultrasound and the “cysts” of PCOS
Tests for insulin resistance (IR)
Why it is important to detect IR early
Treating what's happening: the individualized PCOS treatment Plan
Skin and Hair Changes: Clearing acne, decreasing unwanted hair, bringing back scalp hair
Does anything really help with hirsutism or alopecia?
Getting the cycle back in order
Irregular periods and cancer
Treatment of insulin resistance
The new medications for IR and early diabetes
Weight loss and PCOS

Infertility and PCOS
Is there a male PCOS?
A final word of encouragement

MAKING PCOS LESS CONFUSING
PCOS (polycystic ovary syndrome) is the commonest female hormonal disorder and affects at least 5 to 8% of women – almost 10 million women in America alone. Yet common as it is, many with PCOS find it baffling – and so do many doctors. This lack of information is regrettable and unnecessary. Though PCOS is a complex condition, it is understandable!

PCOS should not be so hard to diagnose because many of its signs are visible: oily skin and acne, increased hair growth on face and body (hirsutism) and loss of scalp hair (androgenic alopecia). Many women with PCOS have difficulty controlling their weight; it is one of the major causes of obesity in women. PCOS can cause irregular periods, infertility and even depression. One of the underlying factors is insulin resistance (IR), also called metabolic or dysmetabolic syndrome.

Recently, more information about PCOS has become available. Unfortunately much of it is fragmented or even contradictory. I wrote this article to put this information together so that it makes sense.

In writing about PCOS, I have to discuss the problems it causes but no reader should feel discouraged because, the basic message is positive: PCOS can be understood and it can be treated.

THE FRUSTRATION OF PCOS
It is frustrating just to have symptoms and even more frustrating when you cannot find anyone who will explain what they mean. Many of the women I see for PCOS at the Hormone Center of New York have been in just this situation; they knew something was wrong but could not get their doctors to give them a clear explanation or, sometimes, even to admit there was a problem.

Polycystic ovary syndrome (PCOS) has several features. Some of the confusion arises because different doctors focus on different aspects. Some define PCOS by how the ovary looks on ultrasound, some by the LH to FSH ratio, some by testosterone levels, and some by insulin levels, others by the menstrual pattern or the skin and hair changes. Which of these is most important? The answer is simple: they all are.

 Actually PCOS is not one condition but a group of them. Your PCOS may be quite different from someone else’s whom you know with the condition. So it is important not only to understand the condition in general but to understand how it affects you.

THE FOUR (OR FIVE) FEATURES OF PCOS
A few years ago I was asked by a group of pharmaceutical scientists to help them devise a computer model for PCOS. This led me to spend a lot of time thinking how PCOS can be broken down into separate features. Finally I came up with a 4 +1 scheme which I believe helps clarify PCOS and make its individual variation easier to grasp.

Here are the 4+1 features of PCOS:

1) Skin and hair changes due to the action of testosterone. These are oily skin and acne, hirsutism (increased facial and body hair), and androgenic alopecia (the female hair loss).

2) Changes in the menstrual cycle (irregular periods) and infertility due to hormone changes inside the ovary.

3) Obesity due to difficulty controlling weight. The extra weight tends to be in the upper body and often the legs are quite thin. Often, standard diets don’t work.

4) Shifts in metabolism, principally insulin resistance (IR) and unfavorable cholesterol changes. High blood pressure is not uncommon. All these can be risk factors for later heart disease. A skin change called ACN (acanthosis nigricans) can be a sign of IR. 

5) The fifth feature is an indirect but very important one: the emotional stress of dealing these physical and metabolic changes. Some speculate that PCOS may directly cause depression by an effect on brain chemistry. This is not proven but is almost beside the point because the physical symptoms are discouraging enough in themselves. PCOS does not diminish femininity but its effects -- weight gain, hirsutism (increased hair growth), alopecia (hair loss), difficulty in getting pregnant -- can certainly make a woman insecure about herself.

WHO SHOULD HAVE A WORKUP FOR PCOS?
If you - or someone important to you - have some of the following, you should consider evaluation for PCOS. (This is intended as general information only. Medical diagnosis must be done through consultation with a physician.)

Very oily skin

Persistent acne

Facial or body hair that requires more than occasional removal (hirsutism)

Loss of scalp hair (alopecia, sometimes called androgenic alopecia)  This is common with PCOS but many women have hair loss without any of the other changes.

Darkening of the skin on the back of neck or underarms (Acanthosis nigricans)

Irregular periods (Periods usually more than 5 weeks apart or prolonged, or heavy bleeding.) This is usually because the ovary does not produce an egg cell (ovum) every month, a situation called anovulation.

Difficulty controlling weight, especially if the extra weight is on the upper part of the body or the abdomen, sometimes referred to as upper segment obesity.

THERE ARE AS MANY FORMS OF PCOS AS THERE ARE WOMEN WITH THE CONDITION
If you have several of the features I have listed, you probably have PCOS. Unfortunately doctors tend to quibble about the definition. Many women have only partial PCOS. Whether to call what you have PCOS or not is less important than getting proper treatment directed at the aspects you do have.

 The approach I take is to work out an individual PCOS profile based on the extent to which each of the four features is present. This gets to what is really important: what features of the condition are present and what treatment will best help them.

If you think you have PCOS or have been told you do, don’t just settle for the diagnosis; find out what your PCOS is.

HOW BAD IS PCOS?
This is a question I hear frequently. Most of the time PCOS is not nearly as bad as it is made to sound. Medical texts are often misleading because they describe only the most extreme form.

 All features of PCOS can be treated effectively. The more you know about PCOS, the more you will be able to be your own advocate in getting treatment.

NOT EVERYONE WHO HAS BEEN TOLD SHE HAS PCOS REALLY HAS IT
While I see many women with PCOS who were never told what their problem was, I also see some who have been told that they have PCOS but do not. The skin and hair changes in particular can occur without any of the other features. If you have increased facial or body hair (hirsutism), or loss of hair from the scalp (alopecia) but no other symptoms of PCOS, you may find the articles on acne, increased hair and alopecia helpful to you.

Labels are stereotypes and stereotyping tends to hide individual differences. With PCOS the differences between women with the condition are as important as the similarities.

WHAT HAPPENS IN PCOS:
INSULIN RESISTANCE, THE NEWEST PIECE OF THE PUZZLE

I’ve already mentioned the four features of PCOS. You may be wondering, why do these things tend to happen together? Here’s the story, as we understand it today. The basic problem seems to be that the body becomes resistant to its own insulin, a situation called insulin resistance (IR). Too much insulin can be just as much a problem as too little. In IR, the body has a sluggish response to its own insulin and compensates by making more and more. Eventually, the IR gets worse and the pancreas cannot make enough insulin to overcome it. At this point blood glucose levels start to go up.

WHAT DOES IR DO?
When insulin goes up several things happen. It acts on the ovary to cause it to make too much testosterone. This may stop ovulation, causing irregular periods and difficulty getting pregnant. Much of the testosterone goes into the blood stream which carries it throughout the body. When it reaches the skin, the testosterone makes it oily and stimulates hair follicles on the face and body. It also can cause scalp hair to thin.

Insulin causes the body to store energy in the form of fat and carbohydrate. This results in weight gain, especially on the upper body and abdomen.

The most common cause of insulin resistance is being overweight. Weight gain increases IR and IR makes it harder to lose weight. It’s not fair. Later I’ll discuss how IR can be overcome.

Studies have shown that nearly all women with PCOS have some insulin resistance. However slender women with PCOS have only a minimal degree that can be detected only by a special research procedure.

Those of us with a long term interest in PCOS have known about the associated metabolic problems for more than a decade. However they have only recently become more widely known.

LAB TESTS AND PCOS
As I have been emphasizing, PCOS is not really one condition but several and so there is no one test for PCOS. However there are several tests which are important to characterize a particular woman’s PCOS.

Androgens are the so-called male hormones of which testosterone is the most familiar and important. Others often measured are and androstenedione and DHEA-S. These do not have much effect on their own but can be converted in the body to testosterone.

Some tests are not very useful: DHT (dihydrotestosterone) is the activated from of testosterone but blood levels do not reflect what is happening in the skin or ovaries. 3 alpha diol G, was once thought to be an indirect measure of tissue DHT but has not turned out to be useful.

Workup for PCOS should include testosterone and DHEA-S. However testosterone can be measured in two forms: total testosterone and free testosterone. The second is the more useful. It is called “free” because it is not attached to blood proteins and so is free to move into skin and other tissues where it causes its unwanted effects – acne, hirsutism and alopecia, as well as anovulation. Best is to get both free and total testosterone measured at the same time.

I WAS TOLD MY TESTS ARE NORMAL. WHAT DOES THAT MEAN?
Tests mean nothing until they are correctly interpreted. Even if a woman’s androgens are normal, they can still have unwanted effects on skin and hair. This is because some women have skin which is much more sensitive to testosterone than others. This skin over-reactivity can be the cause of acne, increased hair or alopecia when the blood tests are normal.

The most important thing is this: There are treatments which work for acne, increased hair (hirsutism) and alopecia even when all hormone levels are normal! Don’t feel discouraged if your tests are normal; help is still available.

LH/FSH   These are the pituitary hormones which regulate the ovary. In PCOS, LH is often higher than FSH. This test is not much use though because results are too variable. FSH is important for any women whose periods are less than every five weeks to be sure her ovaries are still able to function. A very high value of FSH, as happens after menopause, suggests that the ovary can no longer make eggs and estrogen. However FSH is normally high just before ovulation.

Prolactin This is another pituitary hormone; it helps the breast to make milk. High levels can stop menstruation so it should also be measured when a woman is having infrequent periods. High prolactin is a different cause of lack of periods than PCOS and treatment is quite different.

Ultrasound and the “cysts” of PCOS
One would think from the name, polycystic ovary syndrome that the cysts in the ovary are very important. Actually, they are one of the least important features and this is often a point of confusion. There are many kinds of cysts which can form in the body and they have quite different causes. With PCOS, the cysts are actually so tiny as to be barely visible. (They have nothing to do with the usual ovarian cysts which many women have and which can cause pain or bleeding and sometimes need to be removed. Those cysts generally occur one at a time and usually go away in one or two cycles.)

The test used to look for cysts in the ovary is the ultrasound which can be done transabdominally or transvaginally. Useful as this test can be, ultrasound is not the proper way to diagnose polycystic ovary syndrome. Some women have many small cysts but regular periods and do not have the four features of PCOS. Others without cysts in their ovaries do have the other features.

Tests for insulin resistance (IR)
The test for IR is a modification of the test for diabetes. For both, a standard 3 hour glucose tolerance test (GTT) is done. Blood is taken for glucose, then a drink with 75 g of glucose is taken and more samples are taken at ½, 1, 2 and 3 hours. In looking for IR, insulin is measured either fasting or at each time period in addition to glucose. Labs are still not used to doing the insulin levels, so if you have it done be sure to remind them that you need insulin done, not just glucose.

The GTT is not particularly popular. It takes more than 3 hours, the glucose drink tastes bad and often does not sit well on an empty stomach. However this is the best test available outside a research laboratory.

The idea has gotten around that diabetes can be diagnosed just with a simple fasting blood glucose level. This is wrong. When diabetes is associated with PCOS, it is usually quite mild and will not show up with just a fasting level. The GTT is so valuable precisely because it can pick up the tendency to diabetes much earlier. Not surprisingly earlier diagnosis means more better treatment.

WHY IT IS IMPORTANT TO DETECT IR EARLY
Frequently, I make the initial diagnosis of diabetes in women with PCOS. Recognizing the signs of PCOS means diabetes can be picked up at an earlier, milder stage. When diabetes is caught early, use of oral medication almost always results in completely normal glucose levels. It is rare that the sort of diabetes associated with PCOS needs to be treated with insulin injections, oral medication works better. So I have found it definitely worthwhile to test early for diabetes in women who have PCOS. No one likes the thought that she might have diabetes but with early recognition and much better medications, the outlook has changed dramatically for the better. (Not every woman with PCOS needs to be tested for diabetes but most do. This depends on weight, other signs of PCOS and family history.)

TREATING WHAT’S HAPPENING: THE INDIVIDUALIZED PCOS TREATMENT PLAN
I find that a comprehensive approach to treating PCOS is best. Each of the four possible features is assessed and treatment planned accordingly. There is no one-size-fits-all treatment for PCOS.

In what follows you will find information about treatment of each of the four features of PCOS. I have tried to be detailed and specific but only in consultation with a doctor can you determine which is right for you.

SKIN AND HAIR CHANGES:
CLEARING ACNE, DECREASING UNWANTED HAIR,
BRINGING BACK SCALP HAIR

The skin and hair changes are due to the effect of testosterone on the oil (sebaceous) glands and hair follicles. There are two parts to this treatment: lowering testosterone and blocking its effects.

If testosterone levels are elevated, treatment usually includes lowering them. The best way to do this depends on where the extra testosterone is coming from. When it comes from the ovary, oral contraceptives (OCs) usually lower it by about half. It is important to use one of the several OCs which do not have testosterone-like activity. In rare situations, other medications can be used to suppress the ovary more completely.

When the testosterone comes from the adrenal, a cortisone-like medication called dexamethasone can be used in low doses to partially suppress the adrenal so that it makes less testosterone. This medication should be used only in special circumstances and in very low doses.

Is lowering testosterone enough?
Treatments which lower testosterone include oral contraceptives and insulin sensitizers which are discussed in the next section. While lowering testosterone can have some benefit on skin and hair changes, adding a testosterone blocker often produces a much better result.

Blocking testosterone can be done with medications such as spironolactone (Aldactone®) and certain others which are less commonly used. While these are not labeled for treatment of PCOS, they are used quite often. These help clear acne, reduce facial and body hair and ameliorate alopecia. The section on increased hair (hirsutism) tells more about these medications. Sometimes finasteride (Proscar® and Propecia®) is used to prevent the activation of testosterone in the skin. With these as with any other medication which blocks testosterone, it is essential to avoid pregnancy because there is worry that they might adversely affect development of a male fetus. However, they will not affect pregnancy after they have been discontinued for an adequate interval. Any women who is on medication should discuss with her physician ahead of time what to do about the medication when she is trying for pregnancy or pregnant.

Does anything really help with hirsutism or alopecia?
Sadly, many women with PCOS are told nothing can be done. Generally this sort of advice is from physicians who do not take these problems seriously or do not know how to treat them. Do not let yourself succumb to pessimism about PCOS! Proper treatment usually can reduce facial and body hair and help scalp hair. Shedding in androgenic alopecia can be slowed toward normal and many women get regrowth. Hair may not be restored to the fullest it ever was but often there is enough improvement to reduce the terrible worry that goes with alopecia. Of course, as with any medical treatment, results vary. Unfortunately, if left alone, alopecia and hirsutism often get worse over time. For this reason, if you are distressed by them, its best to seek evaluation and treatment rather than waiting to see if they will go away.

GETTING THE CYCLE BACK IN ORDER
Since periods are an inconvenience, some women ask, “what is wrong with not having them?” It is not that periods are good in themselves but rather that regular menses are a sign that hormonal mechanisms are functioning properly.

Irregular periods occur commonly with PCOS because ovulation does not occur every month as it is supposed to. The most common pattern is for periods to come infrequently. However some women with PCOS have prolonged and heavy periods. When ovulation does not occur, the ovary does not make progesterone during the second half of the cycle. Progesterone is necessary to prepare the uterus to have a normal period. When months go by with no period, the endometrium (uterine lining) can get thicker and thicker. Then when a period does come, either on its own or from medication, it is like having several at once: heavy, sometimes with clots and often crampy.

IRREGULAR PERIODS AND CANCER
There is a potentially serious issue with infrequent periods and PCOS. Progesterone protects the lining of the uterus (endometrium) from overgrowth which can lead to cancer. It is very important that women with PCOS who have irregular periods be treated with a form of progesterone to protect against cancer. This can either be an oral contraceptive (all contain a form of progesterone) or a separate medication taken for at least twelve days every one or two months. The various forms of progesterone are discussed in the article on menopausal hormone replacement. The most commonly used is MPA (medroxyprogesterone acetate or Provera®) but natural progesterone (Prometrium®) can also be used and tends to have fewer side effects.

Proper progesterone treatment can prevent most cases of endometrial cancer. Despite this, some women are still told that not getting periods does not matter. Periods themselves may not matter but protecting the uterus against cancer matters a lot.

TREATMENT OF INSULIN RESISTANCE
Having IR does not necessarily mean that someone has diabetes It does however, if a person is overweight, increase the chance that she or he will develop diabetes, particularly if there is a family history. Over time, the resistance to insulin tends to increase and when the pancreas can no longer keep up by making more insulin, glucose levels go up in the blood and diabetes develops.

This is not inevitable however. Some simply luck out and do not develop diabetes at all. Losing weight, even as little as 20 pounds is the best way to reduce the risk. Not everyone is able to accomplish this however. The unfair thing about IR is that not only is it made worse by weight gain, it makes losing the weight harder. Fortunately we now have medications which restore the body’s response to insulin. These medications can reduce IR considerably and may even lessen the chances of going on the actual diabetes.

THE NEW MEDICATIONS FOR IR AND EARLY DIABETES
Older diabetes medications simply pushed the pancreas to release more insulin to overcome the IR. Rather than flog the pancreas, it is better to restore the body’s response to insulin. Several new medications can do this. The one most often used for IR in PCOS is metformin (Glucophage® and Glucophage XR®). One of the appeals of this medication is that it often helps somewhat in losing weight. It can be unsafe in people with kidney disease and interacts with certain things such as x-ray dye and general anesthesia, so if you are on metformin, be sure to tell any doctor or any other health care provider you see that you are on it.

Two newer drugs which directly improve the body’s response to insulin are rosiglitazone (Avandia®) and pioglitazone (Actos®). A similar medication, troglitazone (Rezulin®) was withdrawn because it could cause serious liver problems. The two new ones are much safer for the liver but you should discuss the need for monitoring with your doctor. Research on troglitazone in PCOS showed that it could improve IR and it is likely that the two newer and safer ones have the same effect though so far as I know, they have not yet been studied with PCOS.

One of the best things about insulin sensitizers is that they often restore ovulation and may improve the odds of getting pregnant. Many specialists feel they are the first thing to try, before more difficult and expensive treatments such as hormone injections or IVF. While they have been used to help fertility, they are not FDA approved for this indication, or specifically for PCOS. However they are widely used. Recent reports suggest that metformin can reduce miscarriages in women with PCOS and may be safe throughout pregnancy. As stated before however, the question of whether to continue medication when trying for pregnancy and when pregnant should be discussed in advance with your physician.

WEIGHT LOSS AND PCOS
Weight is an important factor and in an unfair way because PCOS seems to make the pounds go too quickly and off too slowly, if at all. And as weight is gained, the various symptoms may increase. Some women have few signs of PCOS but develop them during a period of weight gain. IR promotes weight gain because the higher insulin levels make it harder for the body to break down fat.

Two things can help with this frustrating situation. First, metformin helps somewhat with weight loss in people with IR It is not a “diet pill” – all diet pills have harmful effects and are to be avoided. Second, a change in nutrition to high protein, low carbohydrate has made a major difference for many women with PCOS. There are several books about these diets but in my experience people do much better if they see a professional registered dietitian. [www.thelowcarblife.com]  The dietary establishment is still skeptical about low carb diets – the American Dietetic Association issued a position statement questioning them – but they clearly work for many women for whom nothing else works. Low carb diets require eating meat or fish. If you are vegetarian, a different approach is needed – and it is even harder to find a sympathetic nutritionist -- but veg diets can be good for PCOS too.

INFERTILITY AND PCOS
This is a whole subject by itself. The important thing is that treatment of women with PCOS who experience difficulty getting pregnant is improving. Insulin sensitizers restore ovulation in many, though not all, women with PCOS, although they are not FDA approved for this use at the present time.

One of the best things about insulin sensitizers is that they often restore ovulation and may improve the odds of getting pregnant. Many specialists feel they are the first thing to try, before more difficult and expensive treatments such as hormone injections or IVF. While they have been used to help fertility, they are not FDA approved for this indication, or specifically for PCOS. However they are widely used. Recent reports suggest that metformin can reduce miscarriages in women with PCOS and may be safe throughout pregnancy. As stated before however, the question of whether to continue medication when trying for pregnancy and when pregnant should be discussed in advance with your physician. 

Women with PCOS who have not conceived within a few months of trying should consult an infertility specialist. How long to try before considering workup and treatment is individual.

While it is true that PCOS can cause infertility, it is important to realize that not all women with PCOS have difficulty getting pregnant. Those with regular periods often can conceive without difficulty. A young woman with PCOS should not assume she cannot become pregnant. Many do without any need for treatment and for those who need treatment, it is often successful. Be careful to get reliable advice about this. The world is full of people whose mothers were told they could not get pregnant!

Some specialists think that for women with PCOS, the use of birth control pills to rest the ovary may limit progression of changes and is therefore a good idea in the years before pregnancy is desired. This is not proven but seems sensible for women who have no contraindications for OC use. It is well established that taking the pill does not reduce the chances of getting pregnant.

IS THERE A MALE PCOS?
PCOS is partly, though not entirely, genetic. One wonders then, what about males who inherit genes related to PCOS? While there will probably be no absolute proof until the genes for PCOS have been completely identified, I think the answer is right in front of us. Those men with substantial hair loss, who are overweight on the upper part of their body and insulin resistant probably have the male equivalent of PCOS. Of course having facial and body hair is normal for men so no one pays attention. Men cannot have irregular periods but they can have the metabolic changes. I suspect that many men with adult onset diabetes actually have the equivalent of PCOS. I’ve noticed that many of the women I see at the Hormone Center of New York have a family history of diabetes, often in male relatives.

Significantly, the treatment for IR or diabetes in men is the same as that for women with PCOS – insulin sensitizers. Of course, many of the hormonal treatments I have discussed are suitable only for women.

A FINAL WORD OF ENCOURAGEMENT
PCOS can be a difficult condition: difficult to live with , difficult to understand and difficult to find treatment for. There is help for all these difficulties however. The first step in making life with PCOS tolerable is being able to understand what is happening. But the most important is finding a physician who is aware of recent research and can properly apply the new treatments.

Things are getting better. The several year old Polycystic Ovary Syndrome Association is an effective advocacy organization. The women’s media now recognizes the importance of the condition and carries more information about it. But the most important thing is this: there are now enough options so that any woman with PCOS can find treatment that will make a real difference for her.

 

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