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The agony of living with polycystic ovary syndrome

Mary never noticed there was anything wrong until she and her husband started trying for a baby.

The 31-year-old’s first clue came when she went off the contraceptive pill her menstrual cycles were 50 days apart instead of the usual 28.

“My cycles were generally like clockwork and I went onto the pill at 18 years old and remained on them for just over a decade,” said Mary.

Through an ultrasound and blood tests, Mary was eventually diagnosed with polycystic ovary syndrome (PCOS).

The illness causes women to have an excessive amount of male hormones, irregular menstrual cycles, excessive body hair, skin discolouration, weight issues and infertility.

“The biggest side effect for me was infertility,” said Mary, who asked that we don’t use her real name. “We are struggling with that at the moment. However it can lead to heart failure and diabetes. My insulin levels are really high, so I am taking drugs to help with that. I am also trying to lose weight as PCOS adds to weight gain and makes it hard to lose. It also adds to your body hair being darker, so there is a lot of waxing.

“There is no cure. I can only try and live with it as best as possible. This includes living a healthy lifestyle, losing weight, taking medication to treat some of the symptoms and then following the various treatments for infertility.”

Matan Yemini, an expert at the Diamond Institute For Infertility and Menopause in New Jersey, frequently sees Bermuda residents with PCOS who are seeking help with fertility issues. Last year the Diamond Institute provided in vitro fertilisation (IVF) treatment to 13 Bermudian women struggling with fertility issues. Dr Yemini said PCOS can actually have a wide range of health implications beyond a woman’s ability to have children.

“It is one of the most neglected female endocrine problems,” said Dr Yemini. “Most of the New Jersey patients that I see with PCOS, they come to me and I am the first one to tell them that they have it. Sometimes the obstetrician/gynecologist (obgyn) never recognises it and sometimes he recognises it, but doesn’t discuss it with the patient. Most of the patients come to be treated when they are trying to have a baby, but most people start having symptoms from adolescence. The positive side of things is that with most of the patients we see from Bermuda, their obgyn has already diagnosed it, and explained PCOS to them. In many cases the obgyn has already taken steps to address it.”

Ideally, women have a menstrual period every 28 days and ovulate around day 14. Women have two million eggs when they are born, and by the time their period starts they have 400,000 left. Every month when a woman has a period they lose about 800 eggs. Under normal circumstances, at the beginning of the menstrual cycle, three to five eggs start to develop into cysts that have fluid. One will take the lead and the others will disappear. There will be ovulation and the body will produce progesterone. If the woman does not become pregnant she will have a period.

“With polycystic ovaries, many of those eggs develop and many disappear at the same time,” said Dr Yemini. “The one that develops has excessive male hormones inside and interferes with the others. Many times the patient doesn’t ovulate. When we do an ultrasound, instead of two or four follicles of eggs, we see many. The criteria says we need to see 12 or more in each ovary but sometimes we can see 50. Sometimes through a fluke one will take the lead and the patient will get pregnant, but most of the time she will not get good eggs and won’t get pregnant.”

A study conducted by the Androgen Excess PCOS Society found that around ten percent of women in any given society have PCOS.

“That is a lot,” said Dr Yemini. “That is, for some societies, equivalent to the percentage of women who have diabetes (10.8 percent of women over 20 have diabetes in the United States). That is a huge thing. Why women have it no one knows for sure, but it is probably genetically related, but there are multiple genes that are involved.”

Women with PCOS can have weight issues, but not all patients with PCOS are obese, some are extremely skinny. PCOS patients who are overweight can have a higher risk for cardio vascular, lipid and blood pressure problems. They are also at a higher risk for ovarian cancer. Dr Yemini said women with PCOS can start to exhibit symptoms in adolescence, maybe even earlier.

“When my daughter was in medical school she was training to be a paediatrician seven years ago,” said Dr Yemini. “At that time I told her that one day this would be a problem that paediatricians would look at. She laughed at me then. The other day she came back to me and said, ‘Dad, you were right. Now, paediatricians are starting to treat PCOS.’”

Unfortunately, with symptoms such as excessive body hair, and skin discolouration, PCOS can negatively impact a young girl’s self-esteem and some adolescents with it are known to suffer from depression.

Dr Yemini said the good news is that it is treatable, and women with PCOS can often have a baby when put under the right medications. There are also medications that can treat the insulin resistance issues that people with PCOS often have.

“Most of our life, we are not trying to get pregnant,” said Dr Yemini. “PCOS still needs to be dealt with when the patient isn’t trying to get pregnant.”

The symptoms of PCOS do get better when a woman reaches menopause because the ovaries work less. But then after menopause, women with PCOS are more at risk for heart disease, high blood pressure and diabetes.

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Published August 16, 2011 at 2:00 am (Updated August 16, 2011 at 9:29 am)

The agony of living with polycystic ovary syndrome

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