Rapid weight gain? Difficulty losing those kilos? Irregular periods?
It’s thought as many as one in 10 women may have Polycystic Ovarian Syndrome, also known as PCOS or Stein-Leventhal syndrome. Despite this, it’s incredible that PCOS is only just starting to be talked about in the media. Information is rare at best and getting diagnosed in the first place can be difficult.
What is PCOS?
Not all women with the syndrome will have ovarian cysts and not all women with ovarian cysts will have PCOS, so even the name can cause confusion.
However, in many women with PCOS, a hormonal imbalance means egg follicles don’t pass into the fallopian tube as normal during ovulation. Instead, they remain in the ovary as benign cysts. While a few cysts like this are not necessarily abnormal, PCOS sufferers tend to have 10 or more which can lead to a greater hormonal imbalance like a snowball effect.
Symptoms of PCOS
Symptoms are different for each person which makes it easy to misdiagnose, but they include:
- Male-pattern hair loss or hirsutism (excess hair growth on the face and body)
- Irregular or absent periods, infertility
- Ovarian cysts and/or enlarged ovaries
- Weight gain/obesity – especially around the mid-section, difficulty losing weight
- Acne
- Insulin resistance
- Raised cholesterol and/or raised blood pressure
- Hormonal imbalance – often high testosterone levels
These symptoms can vary in severity and some women may only have one or two of them, while others may experience all of the above. This can cause problems as PCOS symptoms can vary in each case and it’s common for sufferers to end up visiting multiple doctors before a diagnosis is finally reached (without a diagnosis, how do you treat it?).
Women with normal weight can also get Polycystic Ovarian Syndrome. Some celebs who have been reported as having this syndrome include Victoria Beckham, Kym Marsh, Emma Thompson and Jools Oliver (Jamie Oliver’s wife).
PCOS: Getting diagnosed
Christchurch-based PCOS sufferer, Aimee, was 17 years old when she knew something wasn’t quite right with her health.
“I stopped getting my periods and thought I was pregnant all the time!,” she says. “A doctor said to me, ‘perhaps you have PCOS’. So from then on, I was under her watch and had the blood tests that confirmed my testosterone was high and the ‘normal’ tests for PCOS were off the scale.”
Aimee then went to an endocrinologist – a hormone specialist – who just put Aimee on the birth control pill to help regulate hormones and told her to go to the gym.
“I paid $300 to see her and expected more (help) than this,” Aimee says. “I felt like I would have to go back about five times before she would give up all the information that I needed to know, so I didn’t go to the third appointment. Other than that, my local GP in Christchurch has been great. But she doesn’t know a lot about the herbal side of treating PCOS so that’s why I did my own research on the internet and books, and made my own plan of attack…”
Dunedin resident Simone had a better experience. “As far as my day to day management of PCOS and prescriptions etc all my doctors have been great,” she says. “I did have abdominal pain at one stage which I can now put down to being related to a large cyst and the doctor I saw at that time put it down to either gas or appendicitis!”
What to do about PCOS
Although PCOS is incurable, you can treat the symptoms – in some cases, to the point where your body regulates and returns to ‘normal’ and some women end up with no symptoms at all. However, weight gain, stress or going off medication may trigger it again. Treatment is usually done through regular exercise, a healthy low GI diet and possibly medication and/or the birth control pill. The key is to catch it early, as more serious complications can develop from it such as cardiovascular disease and diabetes if left untreated.
Simone has been managing her PCOS symptoms mainly through diet and exercise. “Strength training in particular has been most important and also eating regularly and sensibly every few hours to maintain my blood sugar,” she says.
Think you have PCOS?
If you think you may have PCOS, ask your doctor to confirm a diagnosis. They will likely do this through blood tests, an ultrasound and your medical history. As there are so many symptoms, it’s possible to mistake PCOS for something else so don’t assume!
If anyone tells you to ‘just lose weight’ and doesn’t point you in the right direction to learn how, find a better doctor. It may help to see an endocrinologist, dietician or naturopath as well. If you are diagnosed, do some of your own research to understand PCOS better and get the support of your friends and family. Due to the nature of the symptoms, PCOS may lead to depression so it’s important to have people around who make you feel good about yourself.
Simone has some good advice for anyone diagnosed with PCOS. “While your doctors advice is important and not to be ignored, remember that PCOS is a syndrome and everyone’s symptoms are very different and therefore there isn’t a quick fix that will suit everyone – although exercise comes pretty close!,” she says.
“If in doubt about your treatment, you can always seek a second opinion. Also, surround yourself with positivity by reading other women’s success stories – all of them are truly inspiring and it will give you a boost when PCOS can seem all too much to overcome.”
Online info on PCOS
– Southern Cross PCOS info
– SoulCysters.com (Information and forum for women with PCOS)
– PCOS NZ