POLYCYSTIC OVARIAN SYNDROME

After years of having no answers, thinking we had "unexplained infertility" as the doctors called it, I finally got a true diagnosis in the fall of 2007.  I have PCOS.  I never gave up trying to figure out what it was I had, because I knew something was not right with me.  As fate would have it, months prior to my diagnosis, I actually watched a show called Mystery Diagnosis on Discovery Health, which I liked to watch every so often (before we canceled our cable to save money).  On this particular episode, they did a story on a woman who turned out to have PCOS.  The thing about this documentary type show is that they don't reveal the diagnosis until the end, so all throughout the program, I was becoming more and more intrigued.  Everything this woman was describing about herself was me!  I remember telling Mike rather excitedly when the show was over, "I think I have PCOS!"  Imagine my surprise when my fertility specialist diagnosed me with it via vaginal ultrasound only a few months later!  There really was nothing more exciting to me (or Mike!) at the time than to hear an actual reason for my mystery symptoms and infertility.  It meant we knew what we were dealing with, and could finally begin real treatment.


I often get the question when I tell people what's wrong with me:  

What exactly is PCOS?



PCOS or polycystic ovarian syndrome is the most common hormonal disorder in women of reproductive age and is a major cause of infertility. About one in ten women of childbearing age has PCOS. 

The term "polycystic ovarian syndrome" derives from the characteristic appearance of the ovaries in patients with PCOS – the ovaries are enlarged and contain numerous cysts (polycystic). Actually, each cyst is really a follicle – a fluid–filled sac that contains an immature egg cell that during the course of the monthly cycle, continues to grown in size and eventually ovulate or release the egg at the mid-cycle. In PCOS - there is a disturbance in the ability of the ovary to make these follicle sacs grow and ovulate.


The cause of PCOS is unknown. (Maybe it's unknown to science, but I blame processed foods and environmental toxins).  Most researchers think that more than one factor could play a role in developing PCOS. Genes are thought to be one factor. Women with PCOS tend to have a mother or sister with PCOS (although I do not). Researchers also think insulin could be linked to PCOS. Insulin is a hormone that controls the change of sugar, starches, and other food into energy for the body to use or store. For many women with PCOS, their bodies have problems using insulin so that too much insulin is in the body. Excess insulin appears to increase production of androgen. This hormone is made in fat cells, the ovaries, and the adrenal gland. Levels of androgen that are higher than normal can lead to acne, excessive hair growth, weight gain, and problems with ovulation. 

What are the symptoms of polycystic ovary syndrome (PCOS)?   

Some patients will have the classic findings of irregular periods, excess weight and excess facial hair – but PCOS can affect different women in a variety of ways and not all women with PCOS share the same symptoms. These are some of the symptoms of PCOS:

• infrequent menstrual periods, no menstrual periods, and/or irregular/heavy bleeding
• infertility (not able to get pregnant) because of not ovulating
• increased hair growth on the face, chest, stomach, back, thumbs, or toes—a condition called hirsutism (HER-suh-tiz-um)
• ovarian cysts
• acne, oily skin, or dandruff
• weight gain or obesity, usually carrying extra weight around the waist
• insulin resistance or type 2 diabetes
• high cholesterol
• high blood pressure
• male-pattern baldness or thinning hair
• patches of thickened and dark brown or black skin on the neck, arms, breasts, or thighs
• skin tags, or tiny excess flaps of skin in the armpits or neck area
• severe pelvic pain
• anxiety or depression due to appearance and/or infertility
• sleep apnea—excessive snoring and times when breathing stops while asleep 
  

 And now for the bad news:


Women with PCOS have greater chances of developing several serious, life-threatening diseases, including type 2 diabetes, cardiovascular disease (CVD), and cancer. Recent studies found that:

• More than 50 percent of women with PCOS will have diabetes or pre-diabetes (impaired glucose tolerance) before the age of 40.
• Women with PCOS have a four to seven times higher risk of heart attack than women of the same age without PCOS.
• Women with PCOS are at greater risk of having high blood pressure.
• Women with PCOS have high levels of LDL (bad) cholesterol and low levels of HDL (good) cholesterol.

The chance of getting endometrial cancer is another concern for women with PCOS. Irregular menstrual periods and the absence of ovulation cause women to produce the hormone estrogen, but not the hormone progesterone. Progesterone causes the endometrium to shed its lining each month as a menstrual period. Without progesterone, the endometrium becomes thick, which can cause heavy bleeding or irregular bleeding. Over time, this can lead to endometrial hyperplasia, when the lining grows too much, and cancer. 

So, how is polycystic ovarian syndrome treated?

Because there is no cure for PCOS, it needs to be managed to prevent problems. Treatment goals are based on your symptoms, whether or not you want to become pregnant, and lowering your chances of getting heart disease and diabetes. Many women will need a combination of treatments to meet these goals. Some treatments for PCOS include:

Birth control pills. For women who don't want to become pregnant, birth control pills can control menstrual cycles, reduce male hormone levels, and help to clear acne. However, the menstrual cycle will become abnormal again if the pill is stopped. Women may also think about taking a pill that only has progesterone, like Provera®, to control the menstrual cycle and reduce the risk of endometrial cancer. But progesterone alone does not help reduce acne and hair growth.

Diabetes medications. The medicine metformin (Glucophage®) is used to treat type 2 diabetes. It also has been found to help with PCOS symptoms, although it is not FDA-approved for this use. Metformin affects the way insulin controls blood glucose (sugar) and lowers testosterone production. Abnormal hair growth will slow down, and ovulation may return after a few months of use. Recent research has shown metformin to have other positive effects, such as decreased body mass and improved cholesterol levels. Metformin will not cause a person to become diabetic.

Fertility medications. Lack of ovulation is usually the reason for fertility problems in women with PCOS. Several medications that stimulate ovulation can help women with PCOS become pregnant. Even so, other reasons for infertility in both the woman and man should be ruled out before fertility medications are used. Also, there is an increased risk for multiple births (twins, triplets) with fertility medications. For most patients, clomiphene citrate (Clomid®, Serophene®) is the first choice therapy to stimulate ovulation. If this fails, metformin taken with clomiphene is usually tried. When metformin is taken along with fertility medications, it may help women with PCOS ovulate on lower doses of medication. Another option is in vitro fertilization (IVF). IVF offers the best chance of becoming pregnant in any one cycle and gives doctors better control over the chance of multiple births. But, IVF is very costly.

Medicine for increased hair growth or extra male hormones. Medicines called anti-androgens may reduce hair growth and clear acne. Other treatments such as laser hair removal or electrolysis work well at getting rid of hair in some women. A woman with PCOS can also take hormonal treatment to keep new hair from growing.

Surgery. "Ovarian drilling" is a surgery that brings on ovulation. It is sometimes used when a woman does not respond to fertility medicines. The doctor makes a very small cut above or below the navel and inserts a small tool that acts like a telescope into the abdomen. This is called laparoscopy (which I had, but surprisingly not for PCOS--it was for my diagnosis of Endometriosis). The doctor then punctures the ovary with a small needle carrying an electric current to destroy a small portion of the ovary. This procedure carries a risk of developing scar tissue on the ovary. This surgery can lower male hormone levels and help with ovulation. But these effects may only last a few months. This treatment doesn't help with loss of scalp hair and increased hair growth on other parts of the body.

Lifestyle modification. (My personal favorite option!) Keeping a healthy weight by eating healthy foods and exercising is another way women can help manage PCOS. Many women with PCOS are overweight or obese. Eat fewer processed foods and foods with added sugars and more whole-grain products, fruits and vegetables to help lower blood sugar (glucose) levels, improve the body's use of insulin, and normalize hormone levels in your body. Even a 10 percent loss in body weight can restore a normal period and make a woman's cycle more regular.

I am a natural freak at heart and after this sadly necessary crazy medically induced IVF pregnancy, I plan to manage my PCOS long term with a combination of medication and lifestyle modification until I can finally reach my goal of cutting medication completely from my life. My mom is my inspiration.  She has type 2 diabetes, was on metformin for several years, and finally because of her lifestyle changes (especially diet related) she is now free and clear of diabetes medications!  Way to go Mom!

Information in this post gathered from several different online sources as well as my own personal experience and doctors.