My Personal Experience with Polycystic Ovaries …
I was formally diagnosed with polycystic ovary syndrome (PCOS) when I was 14 years old. However, I believe I have lived with its symptoms for as long as I can remember.
Even as a very young child I was afflicted with monthly migraines and unexplained tummy pains. At age 12, I begged my mum to take me to a beautician for waxing; I used to wear trousers all year long and I was bullied at school because I had extremely hairy legs and a moustache…
I have now lived with the diagnosis practically more than half my life. Throughout these years, I have lived through its ups and downs. There were times when the condition flared up badly; other times, it appeared to be dormant. My periods were never regular and were also, never the same; I’ve had a few years where I had maybe 2 periods in 12 months, while other years I was fairly regular. Sometimes I had very painful periods; other times, I barely noticed. Sometimes, I suffered for interminable weeks with premenstrual symptoms; other times, I felt nothing at all. Debilitating migraines have been my particular affliction that have caused me countless days of lost productivity.
For the past 15 years, I have also struggled with weight issues; weight has been persistently going up and refusing to get down, and my waistline slowly expanded. I also worried for years that I wouldn’t be able to have children. I even felt I had to warn my husband before we married – in case we never have children, he may have had grounds for annulment…
Over the years I have accepted this condition as being an intrinsic part of me, and that will not go away, and thus I had to learn to live with.
I am also aware that there are women who suffer a more severe form, and in a way, I was lucky that I lived a fairly normal life till now. I even managed to become pregnant without issues.
However, it is only in recent years that I started to realise that living with polycystic ovaries is much more than irregular periods and excessive body hair. The more I researched the subject, the more I learnt that left unchecked, it may have severe consequences on a woman’s health. It also dawned on me that holistic care for the condition is practically non-existent in Malta. Rather, it is treated in a piecemeal manner; we may go to the gynae for irregular periods or infertility issues; to the dermatologist about acne issues or hair loss (alopecia) issues; to a beautician for excessive body hair problems; to endocrinologists for hormonal imbalances…
And yet, in my experience of my long list of professionals that I have visited, no one bothered to tell me that I have a 4-fold risk of developing diabetes, or that PCOS also puts me at higher risk of developing cholesterol, heart disease, metabolic disorders, and endometrial cancer (cancer of the lining of the womb) when compared to women who don’t have PCOS.
Furthermore, no one told me that having polycystic ovaries is a major culprit for causing depression in women – I have struggled with unexplained episodes of sadness and moodiness for years. No one told me that having polycystic ovaries puts pregnant women at risk of developing complications, such as high blood pressure (which I developed), gestational diabetes, miscarriage and premature birth.
I am now also aware that many women are highly uninformed about PCOS and how it affects their bodies and overall health. This despite the fact that the PCOS is very common – up to 10% of women have it. With this article, I am hoping to create more awareness, and perhaps encourage fellow women to tackle their health issues more directly.
Overview of PCOS
PCOS is a hormonal disorder, and its hallmark characteristic is enlarged ovaries with fluid-filled sacs that surround the eggs. However, the name polycystic is misleading as these sacs are not really cysts; they are simply underdeveloped eggs which fail to be released, and thus ovulation does not take place.
That said, some women do go on to develop large ovarian cysts which need to be removed surgically (I myself underwent such surgery twice). These are usually harmless, but if they burst, they may cause significant problems.
Apart from the polycystic appearance, the 2 other main symptoms of the disorders are:
- Irregular periods or prolonged menstrual cycles: Even in women with mild PCOS who have fairly regular periods, their cycle is usually 35 days or longer. Some women go many months without a period. Furthermore, PCOS tends to cause abnormally heavy periods. This is due to the uterus lining which becomes excessively thick with blood and nutrients, while waiting for ovulation which doesn’t take place.
- Elevated androgen levels: Excessive production of male hormones is what causes physical symptoms such as hirsutism (excessive body hair), acne, and in some cases, male pattern baldness or alopecia
A woman is formally diagnosed with PCOS if 2 of these 3 hallmark features are present.
What Causes PCOS?
Insulin Resistance
There is an important characteristic of PCOS which many times is overlooked, and many women are not even aware about: the fact that the vast majority of women with polycystic ovaries are insulin resistant. Insulin resistance is not just a symptom, but a major driver of PCOS.
Insulin is needed to absorb glucose from the blood into muscles and liver, and thus serves to keep glucose (sugar) levels low, and to use glucose as energy when needed. Furthermore, insulin assists in the process of lipolysis, i.e. to breakdown fats.
When our body resists the action of insulin, we start to produce excessive insulin in an attempt to keep blood glucose levels down; in turn, this causes increased production of testosterone and other male hormones. Furthermore, inefficient use of insulin eventually causes elevated blood glucose levels, which leads to diabetes. In addition, inefficient lipolysis means that fat remains in the body as it is not broken down. This is especially concerning as the extra fat not only makes us overweight, but may become visceral fat, which is even more dangerous for our health. In its turn, being overweight subsequently produces even more insulin…
In a nutshell, it all becomes a vicious cycle which sometimes it is very hard for the woman to get out of.
Hormonal Imbalances
Many women suffering from PCOS will have imbalances in one or more of the following hormones:
- Increased levels of testosterone: this is a male hormone which causes a myriad of issues already mentioned, though it is normal for woman to produce small amounts
- Increased levels of luteinising hormone (LH): this hormone stimulates ovulation, however abnormally high levels have negative effects on the ovaries
- Decreased levels of follicle stimulation hormone (FSH): this hormone stimulates the growth and release of the eggs in the ovaries
It’s been suggested that hormonal issues may start in the ovaries themselves, or in the glands that produce these hormones, or in the brain part that controls hormone production. However, the exact nature of these hormonal changes remain unknown.
That said, there is some evidence that these hormonal changes may also be caused by insulin resistance.
Genetics
PCOS tends to run in families. It is quite common for women with PCOS to also have mothers, sisters, aunts, and cousins who suffer from the condition. This strongly suggests a genetic link.
However, the specific genes linked with the condition have not yet been identified.
Treatment of PCOS
It is very important for the woman with PCOS to accept the fact that PCOS cannot be cured and is a lifetime condition. However, the symptoms can be managed and most women are able to live a normal life.
Treatment options vary because not all women suffer the same symptoms.
Medication
- The Pill:
The first line of treatment for PCOS is often the contraceptive pill. The pill is useful to induce regular periods, and this may reduce the risk of endometrial cancer, which is linked with lack of periods.
However, it is important to keep in mind that there are many different types of contraceptive pills, and that these may have unpleasant side effects. Women will usually need to trial a number of contraceptive pills until they find the one which suits them best. The most common side effects are migraines and weight gain. The pill may also cause mood changes, nausea, and decreased libido.
Of these side effects, the most dangerous is migraines. If the woman gets very frequent debilitating migraines, it is important to stop the pill immediately and to speak to the prescribing doctor for an alternative.
There is a very important factor that a woman needs to consider before starting the pill, and this is a family history of stroke. Since the 1960’s, there has been evidence that the pill increases the risk of blood clots. This risk increases significantly after the age of 35. Therefore, women with immediate family history of stroke (i.e. parents or siblings), and those over 35, need to carefully discuss their option with their doctor/gynaecologist for the safest options.
Another crucial factor is smoking. It is highly encouraged that women who are considering to take the pill to quit smoking altogether. This is because smoking while on the pill increases the risk of stroke even more. Women with a family history of strokes, and who smoke while on the pill, have a very very high risk of developing blood clots and subsequent strokes. Thus it is very important that smokers with PCOS are aware of this risk.
- Other methods of Contraception:
Other hormonal options such as intra uterine device (e.g. Mirena) may be considered. These also reduce the risk of endometrial cancer by keeping the womb lining thin. However, it is important to note that periods may stop altogether when using these devices. Furthermore, the side effects mentioned for the pill such as migraines and weight gain are also quite common.
- Infertility Issues
With PCOS, it is not all doom and gloom when it comes to becoming pregnant. In fact, a good majority of PCOS women have no fertility issues. Even though a woman may have a long fertility cycle, it may still be fairly stable. Keeping a record of your periods is very helpful, as this helps you and your gynaecologist to recognise your pattern. Mobile applications called period diaries are especially useful. If data is inputted correctly, the apps often manage to correctly predict ovulation and periods.
When women with PCOS DO encounter difficulties to become pregnant, metformin is often the first choice preferred by gynaecologists. Metformin is a drug which treats Type 2 Diabetes. However, it has a number of positive side effect on women with PCOS, including lowering blood glucose and insulin levels, and lowering cholesterol. This in turn encourages regular periods and also decreases the risk of miscarriage.
Clomifene may also be prescribed. This is a drug which induces ovulation, and is usually given in a treatment course of 5 days.
In women with polycystic ovaries who do not respond to medication, a minor surgical procedure may used to treat fertility issues. This procedure is called Laparascopic Ovarian Drilling (LOD), in which heat or laser is used to destroy the tissues that are producing the excessive male hormones. The procedure often helps to restore normal function to the ovaries and correct the hormonal imbalances.
- Hirsutism and Acne
Metformin usually also helps in lowering the level of male hormones in women with PCOS. For hirsutism and acne issues, metformin is sometimes prescribed in conjunction with the pill (though they are usually prescribed either or). However, sometimes other drugs may also be prescribed if the issue persists, especially in severe acne cases.
Apart from medication, the most effective treatment for excessive body hair, including facial hair, are usually waxing and laser. Shaving is usually not indicated as it tends to worsen the hirsutism problem significantly.
- Lifestyle Changes
This is perhaps the most important factor that any woman with PCOS needs to seriously consider. Lifestyle changes usually lead to significant improvement of the symptoms.
The most important lifestyle factors are the diet we consume, and keeping a healthy weight. In overweight women with polycystic ovaries, just 5% of weight loss leads to substantial improvement of symptoms. All PCOS women are encouraged as much as possible to be in the healthy range of the BMI index, which is between 18.5 to 24.9.
The excessive weight issue is especially vital, because PCOS women have a higher tendency than non-PCOS women to develop visceral fat. This is a type of fat which is found in the abdominal cavity; left unchecked, it starts to coat internal organs such as the liver, pancreas and intestines. Furthermore, visceral fat is an ‘active’ type of fat, i.e. it actually releases harmful hormones which increases the risk of diabetes, breast cancer, colon cancer, and Alzheimer. A woman who has a waistline of more than 35 inches may assume that it is a sign of excessive visceral fat. Visceral fat is not affected by exercise alone; it is only reduced through a very low-calorie diet, although preferably dieting is always combined with exercise.
One diet which has been proven to be effective in PCOS is the Low Glycemic Index (GI) diet. This diet is usually prescribed to diabetics; given the insulin resistance issues, it has obvious health benefits in PCOS. A low GI diet essentially consists of eating foods that raise blood sugar slowly, and to avoid foods high in carbohydrates. Consuming carbohydrates causes the body’s glucose level to spike substantially; excessive daily intake of carbohydrates perpetuates the cycle of insulin resistance mentioned earlier.
Therefore, sticking to low-carb / low calorie diets, and regular exercise, is highly recommended for women with polycystic ovaries. For more information about what to eat if you have PCOS click here for specific advice by registered Dietitian Ariana Zarb.
Conclusion
Given the diverse range of issues which we women with polycystic ovaries suffer from, it is easy to see why it is actually an exclusively female syndrome.
It is very important for woman with polycystic ovaries to be knowledgeable about the condition, and how it is affecting the various spheres of her health and her life. Once we have that knowledge, we have the power to control the syndrome.
It is very important that we seek medical assistance, and get the required treatment. But we must also be pro-active and actively take steps to modify our lifestyle, in order to live a longer and healthier life, and reach our life potentials.
About the Author
The author of this article is an Occupational Therapist working with the elderly in the community. In recent years she developed an interest in women’s health and inequalities in healthcare.
