Living with PCOS

Feature Article: Published in Natural Parenting

“I suggest if you want to have children you do something about it before you turn 30, and you will probably need fertility treatment.”

I was 23 years old when my gynaecologist said this to me and eight years later the words still send a shiver down my spine. There was no way I wanted to even contemplate that option for at least five years, but that warning haunted me from that day onwards.

The reason I had been given this news is that I have Polycystic Ovarian Syndrome (PCOS), which is an endocrinal (hormonal) imbalance that can influence fertility and affects between five and 10 per cent of women of child-bearing age. According to the Australia Bureau of Statistics, there were almost five million women of child-bearing age in Australia in 2003, meaning around 500,000 women could be affected by PCOS.

PCOS presented itself to me in the form of no periods for seven months and irregular periods when I was menstruating. I was also very overweight and fast-approaching obesity, had excess facial hair, lost half of my scalp hair and had a sharp, jabbing pain in the right side of my abdomen. I didn’t know exactly what I should be doing to fix the problem; I didn’t even know what the problem was. All I knew was that I hated the shape I was becoming, having to wax my face and neck every five weeks and the constant worry of when, or if, I was going to have a period again.

Some days the pain and fear of the unknown were so bad that I came home to a dark empty house, took some pain medication and hibernated on the lounge for hours.

I had been seeing doctors and a long list of specialists including several GPs, urologist, allergist and endocrinologist about the symptoms listed above since I was 18. By the time my periods stopped, I was 22 years old and sick and tired of the medical merry-go-round. I was desperate for an answer. My GP was constantly making me take pregnancy tests just in case that was the reason for my non-existent period.

After several months of this I was referred to a gynaecologist and the syndrome that had previously been mentioned by the endocrinologist in passing was confirmed.

Labelling My Problem

After enduring several ultrasounds, two laparoscopies and many blood tests my doctor said I had PCOS. She also told me both of my ovaries were covered in tiny cysts and resembled two pin cushions. Subsequent ultrasounds have shown the classic PCOS ‘ring of pearls’ cyst formation around my right ovary. This ovary was three times larger than my left and there was also a cyst on my right fallopian tube. My tubal cyst was unrelated to PCOS, but was the most likely cause of my abdominal pain.

Not ready to travel down the parenthood road, I began seeing a naturopath at The Jocelyn Centre in Sydney to see whether I could ‘fix’ some of the symptoms and make myself more fertile in case I wanted children in the future. While I wasn’t ready to become a mother then I didn’t want to close the door completely. The program the naturopath devised for me included a low GI diet with herbal supplements and exercise and no caffeine. While I desperately craved chocolate, the change in lifestyle helped with my PCOS symptoms and empowered me to take charge of my life, instead of feeling sorry for myself and accepting my fate.

I followed this treatment for many years and after all the hard work I did to control my diet and do more exercise, I was rewarded with a regular menstrual cycle and increased fertility. I also lost weight, which helped my self-esteem.

When my partner and I decided we wanted a child I stopped taking the pill and we set ourselves up for what we expected would be months of heartbreak as my questionable fertility reared its head. Instead I was pregnant a month later. We were elated and somewhat mystified as to how we conceived our child so easily. I hadn’t needed fertility treatment.

After a trouble-free pregnancy our son was born and we feel awed by his presence every day.

Back to the Drawing Board

My PCOS symptoms were manageable for many years until resurfacing recently. My current doctor recommended I do a two-hour blood glucose tolerance test, the results of which showed I have very high insulin resistance. He said I was lucky to have conceived a child at all, let alone without fertility treatment. My inability to lose all the weight I needed to and my intolerance of too many carbohydrate- and sugar-laden foods was also explained by this latest symptom.

To control my insulin resistance and decrease the chance of me developing diabetes later on in life, he recommended I take Metformin as well as continue with my low GI diet and exercise. While I agreed to start taking the medication, I have also started looking further into what else I can do to help myself. I now feel I have a responsibility to myself and my family to ensure I am healthy and capable for as long as possible. The prospect of developing diabetes scares me, but I am confident I don’t necessarily have to travel down that path.

Now I have to decide whether to continue with the medication, see if natural supplements in addition to my diet and exercise will improve the condition, or both.

My search to find the best treatment for myself again led me to The Jocelyn Centre and one of its counsellors, Angela Hywood, who is a Naturopathic Gynaecological Specialist. Ms Hywood has been practising naturopathy for 14 years and spent the past 10 years focussing on fertility and women’s health. She also runs her own practice, Tonic Australia, in Sydney and lectures to medical and natural practitioners in Australia and the USA.

Ms Hywood said PCOS was formally classed as a syndrome, so many women had different symptoms.

“PCOS is quite an elusive disorder,” she said.

“What’s always fascinating is that PCOS is dumped into the gynaecological problems but it is a poly-glandular syndrome. The endocrine system is an entire system. We have to look at the interrelationships of all glands and hormones.

“The most damning link to PCOS is insulin resistance. Not all women with PCOS have insulin resistance, but the standard Western diet is extremely high in carbohydrates and baked goods, which has led to an escalation in diabetes in the past 50 years. Insulin has a profound impact on ovarian health,” Ms Hywood said.

Insulin Resistance

Insulin resistance is considered to be a pre-cursor to Type 2 diabetes. After years of increased insulin production, the insulin-producing cells in the pancreas can die, leading to insulin levels falling and then higher blood glucose levels and diabetes, endocrinologist Dr Warren Kidson and gynaecologist Dr James Mackenzie Talbot explain in their guide: The Polycystic Ovary Syndrome – a starting point, not a diagnosis. Women with PCOS are also at higher risk of developing gestational, or pregnancy, diabetes, Dr Kidson said.

The Polycystic Ovarian Syndrome Association of Australia (POSAA) states on its website that almost half of women with PCOS are diagnosed as insulin resistant or as having Type 2 diabetes.

 

“It’s been suggested that 40 per cent of PCOS sufferers will be Type 2 diabetic by the time they are 44 years of age,” the site stated on its Health Risks page.

The ability to process insulin gets worse with age, but women with PCOS can do something about this symptom before it gets out of hand. Regular exercise and sticking to a low GI diet can help control insulin levels and stop them from getting worse.

Low GI Diet

A diet containing foods with a low glycemic index (GI) is recommended, with plenty of whole foods and unprocessed grains and starches. Ms Hywood suggests a diet made up from 40 per cent protein from an organic source, as hormones in non-organic food can increase the oestrogens in the body. There should also be 30 per cent carbohydrate and 30 per cent from good, healthy oils. Of the carbohydrates, 80 per cent needs to be extremely low GI, like sweet potato, carrots and non-starchy vegetables that grow above the ground. Low GI fruit like berries, apples, pears, citrus and stone fruit should also be included in your diet, but starchy fruit like bananas should be avoided. The best oils are cold pressed olive oil, grape seed oil, and coconut oil and milk.

“You need to ask ‘is that food in its most natural form?’ For example can you see the grains in bread?” Ms Hywood said.

“Try and have lots of salads, enough protein and enough good oils and your blood sugar will be perfectly controlled. If you choose properly it’s certainly not a restrictive diet.

“Education through food is our most powerful medicine. Choose food wisely and your body will thank you,” she said.

Exercise

Practitioners recommend women with PCOS should exercise 30-40 minutes every other day. Good exercises are walking, yoga, belly dancing, or anything that gets the whole body moving.

“To many people exercise can be a chore because they don’t like it. They should do whatever they think is fun because this will make them want to do it. Belly dancing is great because it gets the pelvic energy moving,” Ms Hywood said.

Treatment

Ms Hywood recommended patients be assessed individually and their treatment developed for them personally, rather than provide a blanket solution for all PCOS sufferers. The practitioner can guide and coach the patient until they learn how to manage the symptoms and their diet and lifestyle themselves.

“Natural medicine is incredibly motivating and inspiring because we see great results with PCOS,” she said.

Natural supplements can also be part of PCOS treatment. Ms Hywood recommends inofitol, which is part of the B vitamin complex, and can improve sleep quality and reduce the effects of physiological stress on adrenal health and ovaries so ovulation can occur. Chromium helps the pancreas and iodine helps ovarian health by reducing cysts, and improving the thyroid condition, weight management and energy levels.

Researching PCOS

Professors Jennie Brand-Miller and Nadir R. Farid and Kate Marsh have researched PCOS for a number of years. The trio explained in their book The New Glucose Revolution Managing PCOS, that symptoms include hirsutism (excessive hair on face, body, upper lip, chin, neck and abdomen), increased testosterone levels, irregular or absent periods, infertility or reduced fertility, scalp hair loss, acne, obesity and polycystic ovaries. However, women can have polycystic ovaries without having the syndrome and many women can have several of the symptoms but think they are unrelated.

 

Dietician and diabetes educator Kate Marsh is currently studying for her PhD at the University of Sydney looking at the benefits of a low GI diet in the management of insulin resistance in women with PCOS. Ms Marsh practices in Sydney, chairs the DAA National PCOS Interest Group and has co-authored two books. She said PCOS could increase the risk of miscarriage and development of diabetes and heart disease.

Diagnosing PCOS

There are several different ways of diagnosing PCOS depending on the type of doctor you are consulting, but in 2003 guidelines were set for diagnosis of the syndrome, Ms Marsh said. Patients need to have two out of the three of the following symptoms before being considered to have PCOS:

1. Irregular or absent periods;

2.  High levels of male hormones or signs of (either diagnosed through a blood test or through the patient having excess facial hair and/or skin problems);

3. Polycystic ovaries as seen in an ultrasound.

“Some countries look at different factors to diagnose PCOS. These guidelines don’t include insulin resistance, but many doctors here look for it,” she said.

Once these symptoms are discovered many GPs will refer their patient to an endocrinologist or gynaecologist.

PCOS and Fertility

While having PCOS can compromise a woman’s fertility, it doesn’t mean she will never be able to conceive a child.

“Most women with PCOS can fall pregnant,” Ms Marsh said.

“Insulin keeps blood sugar under control. When you have a high insulin level it causes more testosterone to be produced and this can cause women not to ovulate properly.”

In many cases once PCOS has been diagnosed and the woman makes lifestyle changes, such as her diet and exercise patterns, she will start losing weight and her fertility will increase. If diet and exercise alone are not enough Metformin can be used to help women ovulate and fall pregnant. And if the combination of these things doesn’t work then another medication, Clomid, can be used to stimulate ovulation. If people need more intervention then it is possible there are other problems, ie the partner’s fertility, Ms Marsh said.

“By focusing on diet and exercise to bring insulin levels down the majority of people fall pregnant. I’ve seen really good success even in a short period of time. One of the factors of my study is people are not trying to fall pregnant and I’ve had four drop out because of that,” she said.

A common treatment for PCOS symptoms is to put the patient on the contraceptive pill, but Ms Marsh said this measure could be counterproductive.

“The pill only treats the symptoms, not the cause, and patients could still develop problems down the track. The pill settles down hormones and gives regular periods and helps with controlling skin and facial hair, but research suggests the pill increases insulin resistance,” she said.

By lowering insulin resistance and increasing fertility, a woman with PCOS is heightening her chance of becoming pregnant. If she does not want to have children other forms of contraception, or a very low dose pill could be considered instead.

Further Information

* The Jocelyn Centre: www.fertility.com.au

* Tonic Australia: www.tonicaustralia.com.au

* Polycystic Ovarian Syndrome Association of Australia (POSAA): www.posaa.asn.au

* The Polycystic Ovary Syndrome – a starting point, not a diagnosis by Dr Warren Kidson and Dr James Mackenzie Talbot. The guide can be downloaded from the POSAA website.

* The New Glucose Revolution Managing PCOS by Professor Jennie Brand-Miller, Professor Nadir R. Farid and Kate Marsh

* Understanding hormonal irregularities: The Diet Cure by Julia Ross

* Tools to help you manage food: www.westonaprice.org, Real Foods by Nina Planck and Nourishing Traditions by Sally Fallon