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PCOS

In October 2007, our guest expert in Le Club's Ask the Expert segment was Dr. Sheila Laredo MD, PhD, an endocrinologist and research scientist at Women’s College Hospital.

Dr. Laredo is an Assistant Professor in the Department of Medicine, Division of Endocrinology at the University of Toronto. Her research studies the treatment of polycystic ovary syndrome, or PCOS.

PCOS causes irregular menstrual cycles, excessive hair growth, infertility and other medical problems such as high blood pressure, abnormal cholesterol levels, and increased risk of adult-onset diabetes. It may affect five to 10 percent of all women.

Dr. Laredo has studied the role of diet and exercise in treating and controlling PCOS. She focuses on research that addresses optimizing pregnancy and live birth outcomes for women with PCOS. She is also interested in clinical trial methodology and is a co-investigator with researchers in other areas, providing expertise in trial design and implementation.

Here are Dr. Laredo’s answers to your questions on PCOS.

Please note: due to the similarity of some of the questions, the first few are grouped together according to subject, with a single answer to follow.

Q: I am a white woman, 48 years old, with pretty regular periods until this past year. I have had seven miscarriages and no children. I have a tilted womb which is supposed to make it very difficult for me to conceive. All my fertility testing revealed that I am really gassy and they could never find my ovaries. I also have cysts in the ovaries. Should I get investigated to see whether or not I have PCOS?

Q: For many years I had irregular periods following my daughter's birth in 1988. I was told I had polyps but they were left for a few years. I had complained of jelly like discharge during my period which seemed to be getting worse. When they were finally removed, the gynecologist told me there were so many she lost count. I also have a cyst on my ovary which they tell me they do not want to remove as they feel it is benign although it has continued to grow. I am now 56 and just entering menopause. How can I find out if some of my medical problems could be related to PCOS? My previous GP had mentioned it in passing but nothing was done to follow up. I currently take medication for high blood pressure and recently started Metformin for diabetes. (I was a gestational diabetic during my pregnancies).

Q: My daughter has many of the symptoms attributed to PCOS (inability to lose weight; weight gain in abdomen; ovarian cysts; no period for five months; slightly elevated cholesterol levels; often "starving" shortly after eating; lack of energy; skin tags) but has had blood tests done by an endocrinologist that all come back "normal." Are blood tests the "gold standard" for a PCOS diagnosis? And is there a special kind of endocrinologist who has more knowledge of PCOS?


A: The above set of questions addresses the issue of diagnosis of PCOS. In fact, some aspects of the diagnosis of PCOS are controversial. There are two sets of standardized criteria, and one newer proposed set (which is a revision of the older two sets):

1. NIH Criteria – these criteria were developed in 1990. By NIH criteria, the diagnosis of PCOS is made if there is evidence of:

  1. oligoovulation or anovulation (infrequent, irregular or absent ovulation), and
  2. hyperandrogenism (excess of male hormones)
    AND the absence of other conditions that could mimic these symptoms. 

Practically, oligoovulation or anovulation is present in women with irregular and infrequent periods. Some experts say that the periods must be less often than every 35 days, on average; others say less than eight periods per year.  It is possible for women to have nearly regular periods without ovulation, although this is less common.

Hyperandrogenism is found when women have evidence of excessive male hormones on blood testing, or based on too much male pattern hair growth (e.g. face, chest, abdomen, back) or male pattern hair loss on the scalp, or sometimes excess acne.

2. Rotterdam criteria – these criteria are from 2003. They include the above two criteria and add in the presence of polycystic ovaries seen on ultrasound as a third criterion.  Two of the three criteria (again, excluding other causes) are needed to diagnose PCOS.

Because of concerns of misdiagnosis, experts have recently recommended to the Androgen Excess Society that women must have hyperandrogenism plus one of the other two criteria (irregular periods or ultrasound findings) to make the diagnosis.  If you have any of the above symptoms, it can be worthwhile to get further evaluation.

It is important to remember that in women with symptoms that are consistent with PCOS, bloodworm is taken to exclude other problems, such as thyroid problems, pituitary problems or more rare hormonal disorders.  Therefore, “normal” bloodworm can in fact be quite consistent with a diagnosis of PCOS. 

Another important point which is sometimes confusing: the “cysts” of polycystic ovaries are not actually cysts.  They are just small follicles in the ovary (generally less than 1 centimetre) that fail to develop normally and ovulate. A single large ovarian cyst is not typically a symptom of PCOS, and polyps are also not the same as polycystic ovaries. These need to be separately evaluated by your gynecologist.

 


Management of PCOS

Q: I have PCOS that was diagnosed in January 2006. I had a baby in March 2007. What concerns should I have now that I am postpartum, and in the future?  What about sugar levels? I took Metformin to get pregnant. Should I still be on it to control weight gain, acne and oily skin?  Thank you!

Q: I am a 33 year old mother of two who has PCOS. It was only discovered when I had difficulty conceiving my first child. After having children, what should I do or ask my doctor to do to keep on top of PCOS? Should I use birth control pill? Are there any tests I should have?

Q: I was diagnosed with PCOS and endometriosis in my late twenties and was given birth control pills to control the conditions. At 46, I recently had a complete hysterectomy (uterus, ovaries, and cervix) because of a large fibroid. I understand that just because my ovaries are gone PCOS can still affect me. What should I be watching for and what tests should I be asking my family doctor for?

Q: What are the risks of endometrial cancer for someone with PCOS? Are they increased for those who have difficulty shedding the uterine lining on a monthly basis?  Is the risk reduced if hormone pills are taken to produce a monthly period? What about the risks of taking "The Pill" after the age of 35 versus the risks of not taking "The Pill"?

A: This is an important set of questions. All of these questions deal with the risks that are associated with PCOS. Because insulin resistance underlies PCOS in a large majority of women, PCOS is associated with other insulin resistant conditions: overweight, high blood pressure, abnormalities of cholesterol levels, and a marked increased risk of developing type 2 (adult-onset type) diabetes mellitus. 

Removal of the ovaries (or the uterus) does not correct the underlying insulin resistance, and therefore women with PCOS should continue to be checked periodically for blood pressure, cholesterol and blood sugar levels. 

Ongoing healthy lifestyle including good diet and regular exercise is always recommended.  In fact, in studies of individuals at risk with diabetes (not necessarily with PCOS), it has been shown that lifestyle is more effective than Metformin for preventing diabetes. Metformin is not the most effective strategy to deal with weight gain, acne or oily skin.  Metformin is useful, to some extent, to prevent diabetes, and also to increase menstrual regularity in women who cannot tolerate, or prefer not to use a birth control pill.  

Some premenopausal women who do not regularly ovulate, including women with PCOS, may have an increased risk of abnormalities of the lining of the uterus (called the endometrium), because there is not regular shedding of the lining with monthly periods. 

This may increase risk for endometrial cancer. There is not a lot of research in this area, but most health practitioners feel that it is wise to induce periods at least every 3 months. This can be accomplished with birth control pills, progesterone alone, or by using lifestyle or Metformin to increase the frequency of menstrual cycles. 

When the birth control pill is used, you need to have a detailed discussion with your health practitioner on the risks and benefits. 

Some of the benefits include: regular cycles, reduction of acne, reduction of male pattern hair growth, reduced menstrual flow (a benefit for women with heavy periods) and contraception.

Some of the risks include: increased risk of blood clots and serious cardiovascular events (although such events are still rare in women on the pill), worsening of migraine, spotting between periods, and changes in mood. The relative benefit vs. risk is an individual decision that should be discussed, although women who are over 35 years of age and smoke should not use the pill.  

 



Q: Would someone with PCOS benefit from taking a supplemental fibre drink such as one which levels blood sugars and reduces insulin resistance?


A: My general rule of thumb is that good nutrition is better eaten than drunk from a glass. Get your fibre, both soluble and insoluble, from natural food sources. Not only is this a healthier approach, but there is research showing that when people take extra calories from liquid drinks, that they do not reduce their food intake to accommodate the extra calories. This can lead to weight gain.

 


Q: After months of irregular periods my doctor found a cyst on one of my ovaries. He suggested that I might have PCOS. On my next exam two months later it was gone. My periods have now returned to normal. I am VERY concerned about fertility issues in the future. I am wondering if it would be advisable for me to get the HPV vaccination? Also what are my chances of conceiving a child in the future?

A: A single cyst that disappears is not consistent with “polycystic ovaries” that are seen in PCOS. Without knowing more details, it is difficult to know what the cause of your irregular periods was, particularly as it has now resolved itself. The question of your fertility potential is also a tricky one, because many things affect fertility, and more information would be required before being able to answer this question.  Also, even among women and men with no known medical issues that could affect fertility, 10 to 15 percent may experience unexplained infertility.

 


Q: I am a 29-year-old female with PCOS. I was not diagnosed until almost two years ago, but based on what I have learned I have likely had it since about the age of 18. Has all these years of no treatment or inappropriate treatment caused permanent damage? At one point I was even put on straight hormones to induce my cycle (I had not menstruated for over year at this point.) It did not induce a cycle and I worry if this could have caused other problems or aggravated the PCOS.

A: I would want to know more about the particulars of your situation.  It is not unusual for women to go many years before they get a diagnosis of PCOS, and this can certainly be frustrating.  The important thing at this point is to ensure that you have had all the appropriate investigations to ensure that other diagnoses have been effectively ruled out, that you do not have problems with cholesterol, blood pressure or diabetes, and that you are having periods at least every three months or so.  If it hasn’t been done, an ultrasound to look at the pelvis (including uterus and ovaries) can be worthwhile. 

 



Q: Are there any groups of women that are more likely to experience PCOS, (e.g., lesbians, obese women) and why would this be?

A: This is a very interesting question.  In fact, it does turn out in one study that lesbian women seen in an infertility clinic were found to be more than twice as likely to have PCOS as heterosexual women.

This does not necessarily mean that this is the case in the general population of women, although it is possible. The reasons are certainly not well understood. Lesbian and heterosexual women without PCOS findings had similar male hormone levels, whereas lesbian women with PCOS findings had higher male hormone levels than heterosexual women.

Since many more lesbian women had PCOS findings than heterosexual women, it is possible that male hormones play a role, but it isn’t clear whether there is a cause and effect relationship.

Obese women are also more likely to have PCOS, because obesity increases insulin resistance. Again, there is not clarity on cause and effect. In other words, does PCOS cause overweight, or is it just that overweight women are more insulin resistant and therefore develop more PCOS? There is no definitive answer, and it may be that both statements are true.

 


Q:  I have recently been diagnosed with PCOS.  I am hoping to start trying to conceive in the next few months.  What are the chances for infertility with PCOS?  What treatments are typically given to treat infertility caused by PCOS?  What is the average time it takes a woman with PCOS to conceive?  Does PCOS increase the chance of miscarriage?


A: This is an important question.  Some women with PCOS have been told that they CANNOT become pregnant, and this is not necessarily true. In fact, because of the perception that women with PCOS will have great difficulty getting pregnant, and because they are not surprised by missing periods, it is not unusual for women with PCOS to be told they are pregnant relatively late into their pregnancy (even into the second trimester).

This misses a valuable opportunity to obtain appropriate pre-pregnancy care. Such care is vitally important, to ensure that there is no undiagnosed diabetes (which can increase the risk of fetal malformations if uncontrolled), and to ensure that if women are using medications for other reasons (e.g. blood pressure) that these are re-evaluated before pregnancy occurs. There are a number of medications that are used in treating cholesterol, blood pressure and diabetes that should NOT be used in pregnancy.

In terms of the chances of infertility, the greatest risk factor is age.  Fertility declines in all women after age 35, and declines greatly after age 40. Women with PCOS need to keep this in mind, because it may take them longer to conceive.

The severity of the irregularity of periods also affects the likelihood of pregnancy, since women who rarely ovulate are less likely to conceive than those who ovulate, for example, eight times a year.  High body mass index, or BMI, also increases the likelihood of infertility, and increases the risk of complications to both mother and baby, even if pregnancy is achieved.  Such complications can include hypertension, diabetes and preeclampsia in pregnancy, miscarriage, preterm labour, and too-large babies.  Finally, at least one study has shown that higher male hormone levels can contribute to infertility.

Many different treatments can be used to treat infertility, and treatment will be individualized depending on the situation. A male partner should always be investigated too! If ovulation is the main problem found during investigation, many reproductive specialists will begin treatment with clomiphene citrate, often for three to six months.

A recent study has found clomiphene citrate to be superior to Metformin in terms of the likelihood of having a live birth. If this fails, other treatments may be required, and the order of such treatments varies a bit between practitioners.

The issue of miscarriage is controversial, because high body mass index also clearly contributes to miscarriage, so it is unclear whether women with PCOS miscarry more after accounting for weight.

 



Q:
I am 48 years old. I did not have any periods. I was taken to a doctor when I was a teen and then went again when I was 23 years old. Both times I was told that it was not a problem unless I wanted to have a child. I was in time told what was occurring in my body after having two children (the fertility doc only focused on and dealt with fertility part of PCOS, birthed at 27 years and 30 years with meds) only because the doctor was frustrated with my questions about a health concern.

I’m left with the impression that the doctors knew I had PCOS; however felt it wasn't necessary to fully explain the issue since I was a woman living in poverty at the time. What type of appropriate sensitivity training do doctors receive so women are fully informed of a medical condition?


A: I am sorry to hear that you have had such a frustrating experience.  I would like to think that as awareness of PCOS increases, that such experiences will be less common. I do believe that it is important to address all of the issues that arise as a result of living with PCOS.  I am not sure I can tell you exactly the nature of sensitivity training that is received in all medical schools (it has been quite a few years for me!) but at our local medical school I know that communication skills are considered a priority.

 

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