Why do you think PCOS is a problem drawing so much attention from the communities in the form of Polycystic Ovary Awareness month, some special programs, etc.? Do you think this issue is so important?
Firstly, woman surveys have suggested that PCOS is underdiagnosed. A lot of women experience anxiety because they have a limited understanding of PCOS. Quite often, a lot of women are labeled with PCOS too early in their life when their physiological systems are still maturing.
A lot of practitioners don’t have the experience of dealing with especially young adolescents who are very conscious about their irregular periods, may have some acne, and are concerned about their appearance. The specialists label them as PCOS and they are prescribed with the contraceptive pill. Actually, the diagnosis hasn’t been made. No tests have been done. And this becomes like a stigma in their life that they may have PCOS. However, they may not have it. New international guidelines on PCO recommend that the diagnosis of PCO should not be made till 8 years have elapsed following the onset of periods.
Secondly, we do not know for sure why some women will develop PCO and why some racial groups are more prone to it. We call it a multifactorial disease, there is racial and genetic predisposition and, above all, environmental factors play an important part. As we know, the average BMI — body mass index —is increasing globally and it is more marked in some populations, especially among the Hispanics, the aboriginal women, Southeast Asian women, and females in Australia.
Increased awareness is important to understand what real PCOS is. The main issue is that people consider it a disease. It is not really a disease. It is a heterogeneous syndrome, which has biochemical abnormalities, varying clinical manifestations and, above all, we are still lacking a gold standard on which to make a confirmed diagnosis.
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What factors do you think are the most important besides, as you’ve said, genetics and environment? Are there any other PCOS risk factors?
There are trigger factors but the most important one is high body mass index (BMI). Up to 15% of women with normal BMI could be diagnosed with PCO at ultrasonography as well. Not all women with high BMI may have all the hallmarks of PCO and have regular cycles as well. The high BMI manifestations in PCOS are variable in different populations when comparisons are made between women in Northern Europeans as compared to women in Southeast Asia and even in Southern Europe.
An important question which is quite often debated is: does PCOS lead to obesity or does obesity lead to PCOS? It is important to remember that it is the Insulin insensitivity which is a key factor in PCO symptoms manifestation. We are trying to figure out why periods become increasingly irregular, and why women start having symptoms such as the growth of facial hair once BMI starts creeping up and why it has variable manifestations in different races.
Furthermore, environmental factors are essential. Because of the increasing use of chemicals in industry and agriculture polluting the water. It has a direct impact on the development of the gametes and also on the development of the offspring.
So, there are multiple factors we are learning more and more about. Almost every day a new research comes out trying to explain why some women develop these symptoms, and some don’t.
Lastly, we know the age of menarche onset (the first period) has gradually come down. Some girls even start menstruating by the age of 10-11. One of the triggers is the fat content of the human body. So, those girls who tend to be overweight in the adolescent years start menstruation early. And then there is still a group of women who will have the delayed onset of menarche (after 16), we don’t know why.
What does it feel like for a woman to have PCOS?
Most women will have the symptoms of irregular periods, various manifestations of excessive hair growth, such as facial hirsutism, mainly on the upper lip, the undersurface of chins and quite often on the sideburns and that feels embarrassing sometimes, of course. They can also have hair growth around nipples, below the belly button (might feel embarrassed to wear a bikini), and legs requiring waxing and shaving regularly.
Some will have facial acne, it may be mild or very intense (pimples with dark heads), and the intensity varies in different genetic groups. That sort of condition is more often seen among young women from Southeast Asia and maybe even Southern Europe.
Most young women find facial hair and acne very distressing and embarrassing. It affects their confidence level, they feel very anxious, have low morale, and some are even depressed. And because they are depressed, they start eating more high-calorie foods, which further perpetuates their symptoms.
Some may face infertility. These women have been trying for a baby and their periods are irregular, they are not conceiving, hence they get depressed. Most of them require further investigations and treatment by an infertility expert. And when they do fall pregnant, some will have adverse outcomes during pregnancy, such as they develop high blood pressure and gestational diabetes.
That is how most women with PCOS present and, of course, all these symptoms affect their morale and confidence. Most of these women would like something to be done.
How do healthcare providers diagnose PCOS? Is there a fixed sequence of actions to be taken by doctors?
This is an area which is still full of controversy. Most doctors make a diagnosis based on clinical features, such as irregular periods, hirsutism, acne, and then they do some blood tests.
In an ideal world, one should take account of the individual, the age of the patient, look at the clinical manifestations (as mentioned above), look at their weight — whether the BMI is above 30, because that is more relevant, and then do hormonal tests.
It is important not to do random blood sampling for hormonal assessment at any stage of a cycle as some hormone levels vary depending on the phase of the menstrual cycle. It is preferable to do them when the woman is in early follicular menstrual phase. It is better to measure the level of free testosterone (but it may not be raised in every woman). Most studies report that 60% of women will have increased levels of testosterone. Another useful test is calculating free androgen index.
Sometimes, pelvic ultrasound scans show the characteristic appearance of PCOS, but sometimes the ovaries appear normal.
So, for making a diagnosis, the clinician should not only rely on the blood tests and ultrasound scan findings but also note the clinical manifestations. It is also important to look at the age of the young person before labeling them with the diagnosis of PCO as their cycle irregularity may be due to physiological changes. In summary, there is no single golden standard for diagnosing PCOS.
How should doctors approach PCOS treatment? Especially as far as communication with patients is considered.
I think a wider awareness about the condition and its effect on the morale and confidence of the young person is very important and education is the key. Young women should be treated more sensitively and their concerns are taken seriously. In that respect, the education of the specialist is also important.
It is important to recognize that the training of specialists and family doctors is not the same all over the world. In some countries, they are specifically taught more about endocrine problems and have a better understanding of them. In other countries, the training of these specialists is not very specific, and some may not have been trained in all aspects of women’s health.
And finally, most specialists specialize only in endocrine problems. They may specialize in dealing with pregnancy issues, cancer treatment, bladder problems, fertility treatment, but they may not be specifically trained to deal with women who have endocrine problems, and that is when PCOS comes in.
PCOS does affect about 8-13% of the population, so it is a big group. But the expertise to deal with PCO is not the same among all specialists who are practicing as women’s doctors.
Would you agree that PCOS is generally worldwide underdiagnosed and undertreated?
Yes, it is, because our understanding of the condition is limited and every day new research papers are published.
I would say sometimes it is overdiagnosed in some cultures as well, because quite often the symptoms young ladies present may be closely related to their passing through the years of development. For example, if somebody starts having a period at the age of 12, it takes another 2 to 3 years for their periods to become regular. If somebody starts having their period at the age of 15, then it takes slightly longer for the periods to become regular. The issue is quite often when these young ladies, accompanied by their parents, visit a doctor, and they are assumed to have PCOS without appropriate work up. Sometimes, it is overdiagnosis.
Conversely, the opposite is true as well, when a lot of women in their later years, above 18, go and see the doctor with similar symptoms. They are not investigated as investigations cost money and the easiest bit for the doctor is to say is: “Please, have this pill, try it for 6 months, come back and see me”.
So there are multiple factors which influence why there is overdiagnosis or underdiagnosis.
What PCOS symptoms do you need to track to diagnose the condition early and possibly prevent it?
I think the first thing is, that if women have irregular periods, they should keep a diary. The diary should clearly note the days when they start menstruation and when they finish, and this diary should be kept for 6 to 12 months. This record will be useful when an appointment is made with the specialist. The diary may show that although periods are not happening every 4 weeks, they may be coming every 5 to 6 weeks, which may be normal in that age group, especially for girls under 18.
Secondly, should young adults be referred for a pelvic ultrasound scan to make a diagnosis of PCO? Most recently, International Guidelines on PCO recommended that “the diagnosis of PCOS should not be made by ultrasound scan, at least before 8 years have elapsed from the start of menarche, the onset of periods”.
So, if the period started at the age of 11, then an ultrasound scan should not be done until the age of 19 to make a diagnosis of PCO. That is very important because there is an overlap between the pubertal development, hormonal changes, and the maturing process of the Hypothalamus-Pituitary-Ovarian axis in early adolescent years which may be confused with the PCOS. It is the duty of the clinician to explain to the young women and their parents that their hormonal systems are still maturing.
Thirdly, girls and women with PCOS risks should exercise regularly and remain physically active.
Fourthly, they should monitor what they eat. Women should be encouraged to eat low-glycemic food with high vegetable and fruit content. The importance of that is that it reduces the risk of visceral obesity (fat deposition around the waist). It has been reported that the average waist size is getting bigger, and we see it every day. So, women can help themselves control their waist expansion by regular exercise. It has been noted that individuals who have a waist-hip ratio of greater more than 1, will potentially have a higher risk of developing other diseases in the long run such as diabetes and hypertension.
A healthy BMI is 25. Once it is above 30, most of the manifestations of irregular cycles start, which then, of course, are considered to be the signs of PCOS.
Are there any methods of PCOS treatment besides diet and exercise?
Yes, there are, of course. Diet is the key because weight management is a lifestyle intervention. And every management has to be individualized. So, there is no hard and fast formula.
The antioxidant-rich foods and low glycaemic diets are good. Recently data have been published on a dietary regimen called DASH (The Dietary Approaches to Stop Hypertension), which is essentially eating low-sodium and very balanced foods. It has shown to lower the levels of free glucose, which is a trigger for insulin release.
Food supplements can also help. There is one food supplement called Inositol, and it is claimed to have positive effects on the hormonal profile of PCO. More research work is required on its effectiveness in young adults.
It is recommended to exercise regularly up to 150 minutes per week, which is not a lot, and that should include 90 minutes of moderate and high-intensity exercise.
There are drugs and, of course, it depends on the symptoms. If the main sign is irregular cycles, then the contraceptive pill for non-smoker young ladies with BMI below 30 is safer. There is one specific preparation containing a small dose of the anti-testosterone compound.
Any woman with the BMI greater than 30 will have an increased risk of deep venous thrombosis, and that risk increases as the BMI grows above 35. So, one has to look at the medication, which could reduce the risk.
There is another drug called Metformin, which is widely used for type 2 diabetes. But this drug has a positive effect on insulin insensitivity, which is commonly seen among women with PCO and those who are obese. That drug is widely used, but using it is important to discuss with your endocrinologist.
However, if a woman has hirsutism, especially on the face, there is no quick fix for it. Most hormonal treatments would last between 12 to 18 months. The objective of hormonal drugs is to lower the levels of free testosterone as it encourages the growth of the hair follicles. Sometimes, physicians prescribe non-hormonal drugs. They are in fact diuretics (water tablets), but they lower the levels of free testosterone. The physician needs to keep an eye on the liver function test and monitor electrolytes in case of using it.
Women may also consider non-medical options such as waxing and laser treatment. All these treatments work, but they are expensive. Their potential good effects can be enhanced if a person considers weight management regimens as well. None of these treatments have a permanent effect although the intensity of hair growth may become less intense. The treatment of facial growth can also be managed with some anti-androgen creams.
Women need to discuss their individualized treatment options with the doctors as each medication has potential side effects.
Does bariatric surgery help with PCOS?
Bariatric surgery’s role in PCOS treatment is very limited. Bariatric surgery reduces the weight, but it also limits the absorption of healthy nutrients. It does lower the levels of free testosterone and it does increase the binding of free testosterone to the sex hormone-binding globulins. It will not have an immediate effect on hirsutism. Overall, there is a healthy trend of biochemical changes in the individual and if they have lost enough weight, their menstrual cycle’s pattern may improve significantly. However, it is not a cure for hirsutism and neither for PCOS.
Does homeopathy cure PCOS?
We have no experience in using homeopathy, and there are no large-size studies to show the benefit as compared to traditional medicines used in regular practice.
Does yoga help in managing PCOS?
Yoga has positive benefits in improving morale and managing anxiety. It can help with coping mechanisms, and women can cope with their emotions and symptoms more positively, but yoga will not affect the natural history of PCOS.
Has anyone ever cured PCOS completely?
Not really. Once the manifestations are there, it can’t be cured entirely. Only the signs of PCOS can be reduced in their intensity.
For example, if a polycystic change has developed within the ovary, it will remain a polycystic ovary. But the manifestation becomes less obvious if you manage it proactively.
For example, if somebody has a BMI of 35 and they manage to lose weight proactively and their BMI becomes 25, then there is more than 80% chance their periods would become regular, there is a higher chance that their manifestations of acne will improve and they may not require any antibiotics or any hormonal manipulation . The intensity of hirsutism will also get better. But the change which has taken place within the ovary will remain there. So, it will still be diagnosed as polycystic ovary when an ultrasound scan will be carried out.
What happens if PCOS is left untreated?
There are no studies on the natural history of PCOS in any racial group. Neither there are any studies on PCOS in different weight groups.
We have to look at the BMI and age of the individual. If someone has a BMI below 25 and irregular cycles, but diagnosed to have PCOS on the scan, that will not change much. It will remain as such. However, if someone with a BMI of 35 has PCOS on the ultrasound scan, has irregular cycles and doesn’t manage her weight appropriately, that woman has an increased risk of metabolic syndrome. Metabolic syndrome increases the risk for this woman to develop type 2 diabetes and the associated cardiovascular risks during her lifetime.
If a woman with PCO and higher BMI becomes pregnant, then she is at a higher risk of developing gestational diabetes mellitus, which has an adverse outcome for the baby and the mother. About 40% of women who had gestational diabetes during pregnancy will develop type 2 diabetes mellitus within 7 years of their pregnancy, provided they have not lost a significant amount of weight following the delivery.
The other risk is cardiovascular disease. PCOS is a risk factor, but the development of heart diseases is, again, multifactorial. It depends on the individual — are they smokers? Have they got any other comorbidity such as high blood pressure and cholesterol metabolic disorder? Do they have an underactive thyroid? A lot of these women may have other medical problems. So all these factors play an important role in increasing the individual’s risk of developing a heart disease in women with PCOS.
What should a woman do to reduce facial hair growth due to PCOS and control it? Does the treatment of PCOS stop the facial hair growth?
The treatment of hirsutism depends on the extent of the disease. Firstly, it needs to be investigated whether the hirsutism is only because of PCOS. There are other endocrine glands which can also increase the risk of hirsutism. So, the investigation should also include initially the thyroid and adrenal glands and blood tests which should be done from the very beginning to make sure the diagnosis is correct, that it is PCOS.
Secondly, any treatment of PCOS, which lowers the levels of free testosterone and free androgens, will have a measurable effect on the growth of hair. The lifecycle of hair which manifests itself as hirsutism is long. Any hair which appears on the skin has got a lifecycle just like a baby — 6 to 9 months — before it manifests on the skin. So, any treatment which is given has to be of long duration, ideally between 12 to 18 months, and, in fact, may be lifelong, as hair follicles keep on developing underneath.
As no one wishes to take hormonal treatment, women can consider laser ablation of hair follicles, especially in the unwanted areas. The focused laser treatment destroys the hair follicles’ base. This adjunct treatment will have an enhanced effect on the regrowth of hair than the medication alone. However, not all lasers are equally effective, and some women may have adverse skin reactions to them as well.
Thirdly, we need to stress upon the weight management. People should work towards a healthy weight target (<25 BMI), because it will also reduce the levels of free testosterone in their circulation. Whether the cure is permanent, it is something that needs to be monitored because every woman responds differently to different laser preparations. Some laser preparations are very specific for certain areas, and some laser modalities don’t work in certain racial groups at all. If they have thick hair growth, then only one specific laser would work, not all of them. So, the physician or the beautician need to know what is the best laser for this individual person.
Is hair loss due to PCOS possible?
Hair loss is difficult for women at any stage in their lives. It is particularly distressing and has psychosocial impact. It can lead to adverse effects on their feelings of attractiveness, low self-esteem, and social isolation. Any endocrine conditions with higher levels of circulating androgens can cause generalized thinning of scalp hair and in extreme situations, may lead to significant loss of hair from the scalp as well.
These conditions include PCOS and conditions affecting adrenal gland (congenital adrenal hyperplasia, Cushing syndrome). Other causes include underactive thyroid and long-term conditions (Diabetes, Lupus, Inflammatory bowel disease, Liver disease, Iron deficiency and rarely syphilis etc). Hair loss can also be associated with the use of drugs (antidepressants, anticoagulants, anabolic steroids, carbimazole, oral contraceptives, cancer chemotherapy). Loss of hair has also been linked with poor nutrition, low protein intake, and excessive dieting. Loss of hair essentially happens because of a sensitivity of hair follicles to the hormone called DHT (dihydrotestosterone). Baldness could also run in the family as it is believed to be polygenic. It may equally occur in women when they are approaching changes in life and in postmenopausal years. For that reason, these women need to be seen by a specialist, who is interested not only in polycystic syndrome, but also had a wide experience in endocrinology.
What would you recommend to gender-fluid people with PCOS?
For instance, female-born people who want to be more masculine sometimes face the symptoms of PCOS and they find them actually encouraging and emasculating them even more, like growing a mustache, for instance. And sometimes they don’t even want their PCOS to be treated. They don’t like excessive weight, of course, acne, but they like the facial hair growth and they sometimes even say they feel more masculine because of this. Have you ever faced such cases?
I think our society is changing a lot. Women can choose how they want to live. Most of these women with facial hirsutism are fed up with their accessory hair as most standard treatments are not working. They wish to be treated and they would like to have a nice clean face because it is embarrassing, they can’t face the crowd, as they call it. You do see these exceptional individuals as described above, sometimes some of them even want to get rid of all the feminine aspects of their body, including periods, because they want to look like a man. But these are individual choices. We have to address what their needs are and how we can support them.
So it comes down to the communication between the patient and the doctor?
It comes down to the choices: what they would like to have, what their preferences are in their personal lives. They would like to be more masculine, and if their problem is with periods, of course, you would have them to control their periods. Certainly, you cannot argue about their perception, demands, and needs, as they have already decided. It should be an informed discussion with an open mind.
The patients also need to understand that excessive male-type hormones do have adverse effects on the lipid profile. The lipid profile is cholesterol and fat metabolites, which increase the risk of cardiovascular disease, so that is an important consideration in their treatment.
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Have there been any recent advanced research in PCOS? What is the science moving towards in PCOS detection, prevention, and treatment?
Firstly, science is moving in a direction to understand what is the best way of diagnosing it and treating various manifestations of PCOS?
Secondly, science is moving towards a very focused approach on how to treat women with various manifestations, because some of them will have very little manifestations and they may have PCOS with cycle problems. So, that is a different group.
Then, there is a group of women who have severe manifestations of the condition. We are trying to understand how to manipulate the hormonal treatment, working with natural and low glycaemic dietary supplements. The new focus is on a lifecycle approach and to encourage a healthy lifestyle. There is a huge group of experts believing in educating women rather than giving them a ton of hormones.
The role of laser treatment for hair growth is increasing rapidly and we need to learn which type of laser is more specific for various types of hirsutism and what is the long-term impact of such treatments on hair re-growth.
PCOS can manifest itself with excessive loss of hair leading to generalized thinning of hair and baldness. More work is required on drugs which bind to free circulating androgens, local treatments, as well as the role of hair growth stimulants and anti-inflammatory agents.
And lastly, of course, bariatric surgery is coming into focus, which can help to control the weight of the women and give them a healthy lifestyle. Because when they’re overweight, their confidence level is low, they feel depressed, they can’t exercise because of the excessive weight constraints. When they lose weight, then certainly it is a stimulus for them.
Finally, we must invest more to understand what women want and think about their condition, its impact on them. And we know now, there is a big psychological impact on women, on their morale, on their energy level, and their anxiety level. So, more and more input is coming from the psychiatrists, who can try to understand how to support this woman.
What advice would you give to people who have PCOS and those who suspect something, but are afraid to be diagnosed with PCOS?
I think it is important to encourage women not to be afraid of asking their physicians difficult questions during the examinations and visits, and they should have a realistic discussion and expectations. A realistic discussion is talking about what your symptoms are, what tests you need and what your precise diagnosis is.
And the expectation is that sometimes the doctor may not know answers to all the questions. Each woman needs to find an appropriate specialist, who can look after them, and be patient because in PCOS there is no magic cure. It is a lifelong condition, it is not cancer, it is not a disease, it is a syndrome manifesting in different ways with different symptoms. And every condition has to be managed and they should work very closely with their physician.
Lastly, going back to my favorite —lifestyle intervention. My advice is, drink lots of non-fizzy fluids, and eat healthy food with low-glycemic index and rich in antioxidants so that your sugar level is low. Eat three meals a day, because the habit these days is walking into a fast food shop to buy something and eat when you get hunger pangs.
We should emphasize the following: junk food is not good for you! Enrich your diet with low-glycemic index and rich in antioxidants — more nuts, more fruit and vegetables. They can help themselves rather expecting physicians to help them with medication.