around the ovarian surface, commonly called a ‘string of pearls’.
DOES PCOS MEAN I HAVE OVARIAN CYSTS?
Ovarian cysts are a common but usually unrelated gynaecological disorder. They differ from polycystic ovaries in that they 1) are typically found within the ovary 2) they occur singly and not in groups and 3) can, if left untreated, become cancerous. Polycystic ovaries, on the other hand, are neither cancerous nor are they likely to become so.
WHAT CAUSES PCOS?
PCOS continues to perplex even the medical experts7 who specialize in it. We know that there’s a very strong genetic and hereditary basis of PCOS,8 but even if two women have the same gene they may end up with different symptoms, depending on their environment and lifestyle.
TIME FOR A NAME CHANGE?
As the ‘cysts’ in PCOS aren’t actually cysts at all, and because a woman who’s had her ovaries removed can still have PCOS symptoms, some scientists are calling for a name change for the condition – if the underlying metabolic condition affects your ovaries, then your ovaries aren’t the cause and shouldn’t be the main focus of the name.
‘Polyfollicular syndrome’ has been suggested, as have ‘ovarian dysmetabolic syndrome’, ‘Syndrome O’, ‘cystic ovaries’, ‘functional hyperandrogenism’, ‘Stein-Leventhal syndrome’ and ‘chronic anovulation’.
It’s fantastic that the condition has become a talking point among medical specialists, and while PCOS may be an imperfect name, whatever the syndrome is eventually called, it matters most that it’s recognized, evaluated and treated.
The effect of environment and lifestyle is also clear because you can have polycystic ovaries (PCO) without having the syndrome (PCOS).
With pelvic ultrasound it has been found that approximately 20–30 per cent of women of reproductive age will have polycystic ovaries, but only about half of these will have the signs or symptoms of PCOS. If the otherwise ‘normal’ group is examined closely, experts9 believe they may be experiencing the subtle hormonal changes associated with PCOS, but just have them under control, perhaps due to diet, exercise and lifestyle factors. But women with PCO are thought to be predisposed to develop PCOS if those lifestyle factors change, and if they do it could have a significant impact on their long-term health, such as an increased risk of diabetes and heart disease.
It’s also possible to have PCOS symptoms but not have polycystic ovaries on a scan. This makes sense if you think that the ovarian changes are just another symptom of the underlying cause of PCOS – which we’ll talk about in the next chapter.
‘When I was finally diagnosed with PCOS the relief was incredible. Knowing what is wrong with me gives me choices.’
Susan, 38
The search for the underlying cause of PCOS is ongoing. Here’s what researchers have uncovered so far.
IT’S ALL IN THE GENES!
Researchers have noticed that PCOS tends to run in families, and a number of studies1 suggest that genes play a part in developing the syndrome. A gene is a basic unit of heredity; bits of DNA that direct the reproduction, growth and function of cells. Symptoms are fairly easy to track down through the generations. There may be early male-pattern baldness in men (where the hairline recedes at the front and on the crown) and PCOS symptoms in women. The long-term health risks of PCOS – such as diabetes, high blood pressure and obesity – can also be seen in both sexes, and it’s thought that if a woman has PCOS, then her immediate family members have a 50–50 chance of having it too.
CAN GUYS HAVE PCOS?
Some researchers believe that the PCOS gene can be passed down in men as well as women. Obviously it’s harder to diagnose in men, because they don’t have ovaries and don’t have periods, and what would be considered hirsutism (excess hair) in women would be considered normal hair distribution in men. Still, a number of different findings have suggested a pattern of symptoms which, if found together, may represent the male counterpart of PCOS:
Increased number of hair follicles
Low sperm count
Premature balding
Insulin resistance
Weight gain in the stomach area
Increased risk of diabetes and heart disease.
All this is currently speculative, but the signs that link some aspects of PCOS to male relations2 of women with PCOS adds weight not only to the pattern of inheritance theory but also to the ongoing argument against the appropriateness of the current name for the broad spectrum of symptoms associated with PCOS.
PCOS also seems to be more common among women from southern Asia than in white Caucasian women, but no one yet knows why.
Researchers are currently using gene technology to try and discover if any specific genes trigger PCOS. They need several hundred families to take part and the process can take decades. So far, studies that have concentrated on genes controlling oestrogen and progesterone have found no genetic link. But an interesting 1997 study3 showed that in PCOS a faulty gene may be involved in the first stage of testosterone production, and could account for the raised levels of this hormone often seen in women with PCOS. It’s possible that this gene may interact with other genes and with the environment to produce PCOS. Another study4 revealed that there may be a link between a specific variation in the insulin gene and the failure to ovulate in women with PCOS.
Other research suggests that PCOS may represent the final outcome of different, deeply inter-related genetic abnormalities and environmental factors that influence each other and perpetuate the syndrome.5 Most women dealing with the condition believe this to be true. We all know that if we’re stressed or put on weight or don’t exercise, it affects our symptoms.
Research into the genetics of PCOS continues – but what’s in it for us? If we can discover what genes trigger the syndrome, medical companies hope to develop medicines based on this knowledge, and perhaps even tests that can show very early on in life whether a person has PCOS or not, so you could create a diet and lifestyle to combat the problem, right from the start.
‘The biochemistry of PCOS is fascinating – but even more gripping is the realization that here is a genetic condition where, although there is no cure, sufferers can control the outcome through diet and lifestyle,’ says Dr Adam Carey, reproductive endocrinologist and nutritionist. ‘It is a condition where women really can use their environment to interact with their genetic programming and create a positive outcome.’
TOO MUCH MALE HORMONE?
Another theory about what causes PCOS is that women with the condition produce too much testosterone
