A few episodes ago on our Swedish podcast we talked about PCOS with Jenny Koos, a sexual health advisor and Holistic Reproductive Health Practitioner. During the episode we promised that Jenny would appear here on the blog as our very own expert on PCOS and today it is finally time.

– Jenny, tell us. What is PCOS exactly?

Polycystic ovary syndrome, PCO-S, is part or a precursor to a metabolic syndrome including diabetes, obesity and cardiovascular problems. The name has been on the verge of changing for several years to “metabolic reproductive syndrome”, or “Anovulatory Androgen excess”, because “PCOS” is misleading. Explained here:

“[The name PCOS] is a distraction, an impediment to progress,”… “It causes confusion and is a barrier to effective education and communication. It focuses on… polycystic ovarian morphology, which is neither necessary nor sufficient to diagnose the condition. ”(NIH panel, 2012)

– What are the symptoms?

Women with PCOS have an excess of androgens (“male” sex hormones), which can express themselves as an irregular menstrual cycle, acne, increased hairiness according to a “male” pattern, thinning of the scalp, or obesity around the waist. In the long run, it is linked to a higher risk of diabetes and gestational diabetes, cardiovascular disease, high blood pressure and uterine cancer.

However, the syndrome is more complex than singular external symptoms, but conventional medical treatment focuses on suppressing the symptoms, e.g. by completely shutting down the ovulation and causing regular withdrawal bleeding. The problem with PCOS, however, is not that you do not bleed, but you do not ovulate.

– Yeah, we are aware of the issue with ovulation. We have many friends with PCOS who have had problems with irregular periods and difficulty getting pregnant. How common is it with PCOS?

It is estimated that up to 18 percent of women of childbearing age have PCOS, and of course that number isn’t’ including unknown cases. It is a metabolic syndrome, a endemic disease based on diet and lifestyle and is not about arduous ovaries. Read more here, here and here.

– Breakdown for us what it is that’s happening in the body?

In a normal menstrual cycle, the growing follicle (egg shell) actually produces androgens, that is, “male” hormones. However, this androgen in the follicle should then convert to estrogen, and a peak of high estrogen is necessary for the brain to drive the ovulation using the hormone LH. The problem with PCOS is that the follicles stay idling.

The hormone LH from the brain at PCOS is elevated for longer periods than normal – because the brain wants to ovulate, which for various reasons cannot be completed. This can make ovulation tests difficult to read.

When the levels of LH are elevated, the conversion to androgens such as testosterone and dihydrotestosterone increases, giving rise to acne and hirsutism (increased male-type body hair). Even stress is a major contributing factor, as androgens can also be overproduced from the adrenal glands.

– What’s the relationship between androgen excess and ovulation?

Essentially, androgen excess, accumulated from various sources, affects the regulation of the menstruation cycle from the brain, resulting in a vicious circle where the weakened ovulation ends up preventing itself.

In addition, from the “half-mature” follicles (growing eggs that have not come to the end spurt), the hormone AMH is released. Women with PCOS have therefore increased AMH. They also have low SHBG, a transport protein that normally binds free testosterone and makes it inaccessible.

– That’s a lot to keep track of, but so interesting. How is the diagnosis determined?

Well, there is a lot to think about. One or more ultrasounds that show on PCO do not equal that you have PCO-S. Diagnosis cannot be given just by ultrasound!

PCO stands for polycystic ovaries, and means many small semi-mature follicles in the ovaries without any particular one leading or appearing to be ovulating. This phenomenon is known as “the pearl band” when seen on ultrasound. However, the pearl band in itself says nothing about WHY your follicles go and go but don’t come to the party. It may have other things to do than PCOS: puberty, hypothyroidism (underactive thyroid), nutritional deficiency, stress, high prolactin, or some medications.

PCO alone can thus occur during an extended menstrual cycle, during stress, or after recently discontinued use of endocrine disrupting contraceptives, and is therefore, in certain circumstances, “normal”.

According to the AE-PCOS Society, diagnosis can only be made if the person meets all three of these criteria:

• Irregular cycles and/or PCO
• Excess of androgens such as testosterone, androstenedione and DHEAS – or symptoms of the same in the form of acne, increased hairs (hirsutism) or obesity (especially around the waist)
• Do not have any other reason to overproduce androgens, eg congenital adrenal hyperplasia

Thus, if you have been diagnosed with PCOS based solely on an ultrasound, without having taken blood samples, the doctor has not done his job. You could be able to ovulate a few weeks afterwards and thus not have the careless diagnosis anymore!

If you do not have a period for a couple of months it does not necessarily mean PCOS. You may instead have suffered from hypothalamus syndrome, which is not at the ovarian level but means that the brain closed down the menstrual cycle due to malnutrition or overtraining.

Knowing WHY your menstruation cycles are irregular, why it is difficult to ovulate, is absolutely crucial for which treatment will work for you!

– But if a woman finally gets the diagnosis, what does she need to know to alleviate the symptoms? For example, are there different types of PCOS?

Lara Briden refers to 4-5 different types of PCOS, which I think is a helpful approach to finding the drugs that actually work for the individual.

The first and foremost is the insulin-resistant variant. Of women with PCOS, 30% have been shown to have impaired glucose tolerance, another 7.5% have diabetes, and one need not be overweight to have blood sugar problems. Insulin resistance means that you cannot use insulin, which usually means increased production. Insulin resistance does not have to mean obesity or diabetes, but can definitely lead to it.

The insulin resistance factor is the reason why type 2 diabetes is a future risk for those who suffer from PCOS – at ground level it is essentially the same problem. And given that many of us are raised on frosted flakes, instant noodles and candy it’s maybe not so strange that PCOS is increasing.

Hyperinsulinemia affects the growing follicles locally and drives a testosterone production, instead of the estrogen that should actually dominate. High insulin also raises LH from the brain, further increasing the production of androgens in the ovaries. High insulin also lowers SHBG, which means more free testosterone.

A bit more progressive doctors use Metformin, a diabetes medicine, for PCOS. Often, however, the focus is often solely on lowering the androgens, which does not overcome the underlying problem.

– You mentioned PCOS stems from diet and lifestyle, and now you mention the link to insulin resistance and blood sugar levels. Does this mean that women with PCOS should think about what they eat?

Yes, you can definitely greatly reduce your sugar intake and make your insulin receptors more sensitive so the insulin doesn’t shout at them. Low Carb Diets is proven effective, but I would not recommend removing carbohydrate/starch completely, because you need them to be able to ovulate. Eat well and balanced during the day and avoid sugar-roller coasters, even if they consist of raw nutrition balls. Sleep helps, magnesium helps, inositol is an option.

– We’ve heard that vitamin D plays a roll here too, is this true?

Yes, vitamin D is a prerequisite for you to ovulate properly and there is plenty of research on how it is involved in PCOS. For example, it has been shown to induce ovulation in women with PCOS, as it optimizes follicle growth (the growing follicle has receptors for vitamin D), as well as lowers AMH and testosterone. Vitamin D deficiency is associated with insulin resistance, difficulty in ovulating, hyperandrogenism, overweight and so on. In this study, up to 85% of women with PCOS had low levels of vitamin D in their blood.

– Thanks, Jenny! We’ll continue with the rest of the PCOS issues on Thursday. Ciao!

Photo: Jenny Koos.

Jenny Koos is a Holistic Reproductive Health Practitioner, but also known as Vulverine, the pussy whisperer, or simply a holistic-minded sexual health advisor. You can find her on facebook and instagram.