The Enemy Inside: Living with Polycystic Ovarian Syndrome
Getting A Diagnoses-It Is Only the Beginning
I had never heard of polycystic ovary syndrome (PCOS) until I was referred to a gynecologist by my family doctor. I was 37 and had been suffering since I was a teenager with acne, weight gain, and severe menstrual cramps with prolonged bleeding. Within minutes of the physical examination, the doctor flung the words at me like guests throwing rice at a newly married couple: 'You have polycystic ovary syndrome and we need to do a D&C to see if you have uterine cancer.'
All I heard was cancer, but he continued. He told me that PCOS was the reason for me being overweight, having pre-menstrual syndrome (PMS) and suffering from acne so severe that it impeded my social life as a teen. Not to mention bleeding excessively for seven days or more each month. Wow, so this is why I have been tortured for three weeks out of every month since I was 10. I walked out of the office not sure what I had or how I was going to be treated.
I went home and started to research the syndrome. According to womenshealth.gov, among one in ten and one in 20 women of childbearing age has PCOS. As many as five million women in the United States may be affected. It can occur in girls as young as 11 years old. Well, I'm pretty sure mine started at 10.
So what is this mysterious syndrome that makes the teen years a living nightmare and adulthood the continuation sequel? Polycystic ovary syndrome (PCOS) is the most common hormonal disorders among women of reproductive age. The name of the condition comes from the appearance of the ovaries in most, but not all, women with the disorder — enlarged and containing numerous small cysts located along the outer edge of each ovary (polycystic appearance).
And the unrelenting symptoms that torture you till you wish your uterus and ovaries were removable accessories? Infrequent or prolonged menstrual periods, excess hair growth, acne and obesity can all occur in women with polycystic ovary syndrome. Menstrual abnormality may signal the condition in adolescence, or PCOS may become apparent later following weight gain or difficulty becoming pregnant.
In addition, the body may have a problem using insulin, called insulin resistance. When the body doesn't use insulin well, blood sugar levels go up. Over time, this increases your chance of getting diabetes. The news just kept getting better with every search return.
It seems that years of strict dieting and excessive exercise, plus taking oral contraceptives during my youth suppressed many of the symptoms of PCOS. To my dismay, the acne as well as the excess hair growth had not remained suppressed.
In my late twenties, I had been married for a few years and was feeling comfortable in my own skin, so I decided to just relax. I stopped the crazy dieting that was by now taking a toll on my body. I had also made the decision to stop taking birth control pills due to the side effects I was experiencing, most prominent being vertigo. All these decisions led to the explosion of my PCOS.
I started gaining weight rapidly. When I say rapidly, I mean at the speed of light. I had always battled my weight but this was something different. I would gain a pound a day from eating no more than 500 calories. I started suffering from a lack of concentration and brain fog. I knew my body and something was not right. My doctor diagnosed me with hypothyroid disease and put me on Synthroid. In the end, I had gained an incredulous amount of weight that totally disfigured me from the person I once was. I was miserable.
For the next ten years my doctor told me I needed to lose weight and kept increasing my Synthroid. I tried to lose weight but my energy was so low, my stress from life so high, it just did not happen. I continued into my thirties with severe acne, horrendous PMS, and no real answer for what was actually going on in my body. I never got a real answer until the gynecologist gave me the not so magical diagnoses of PCOS.
A D&C-What They Didn't Tell Me
So what happened after the initial diagnoses? The D&C is what happened next. I walked into the procedure room with no expectations of what would occur. In front of me was a very odd looking table half the normal size with stirrups far more apart than any I had seen before. I fully admit at that point I was scared out of my mind. Not entirely from the thought of the procedure but that I was going to have to fit my overweight self on that table and then spread my legs further than I had since I was a cheerleader in high school. I needed something to calm my nerves; the female anesthesiologist understood and accommodated me accordingly. Looking back I wish the procedure would have been explained to me first. I know doctors are in a hurry these days but it would be nice to be a bit more prepared before an operation. I guess many physicians leave it to the patient to do the research but I am old fashion in wanting a face to face beforehand.
For those, like me at the time, not familiar with what a D&C is, here is a ghoulish explanation. A D&C (dilatation and curettage) is the opening of the cervix and surgical removal of part of the lining of the uterus by scraping and scooping. D&Cs are commonly performed for the diagnosis of gynecological conditions leading to 'abnormal uterine bleeding; to resolve abnormal uterine bleeding (too much, too often or too heavy a menstrual flow); to remove the excess uterine lining in women who have conditions such as polycystic ovary syndrome (which cause a prolonged buildup of tissue with no natural period to remove it). Yes ladies, the scraping and scooping actually occurred to my horror.
As I was coming out of the drug induced coma, I heard the anesthesiologist tell a nurse that the doctor had a very difficult time due to the condition of the patient. I really could not process this at the time because all the scraping and scooping that occurred was starting to make me have a very bad day. The nurse and anesthesiologist preceded to make me get off the table and walk back to the examination room. The journey was the longest five feet of my life. The pain was significant and I begged for narcotics.
When the doctor came into my room he looked as if he had climbed Everest. He told me the procedure lasted twice as long as it should have due to the amount of scar tissue I had in my uterus. He said that he, in his long career, had never seen a uterus in that bad of condition without having cancer and we would know for certain in a few days when the biopsy results returned.
A few days passed and I received a phone call from the doctor informing me that I did not have the cancer but due to the condition of my uterus he recommended a total hysterectomy. I fully agreed and had the procedure a month later.
For a person like me who suffered over 20 years from marriage breaking PMS, horrendous cramps and excessive bleeding, a hysterectomy was a true gift. My husband and I did not want our own children and I felt it was time for a positive change.
The operation was a rousing success! I experienced hardly any bleeding or pain and had a paid six week vacation from work. Life was good. My experience will not be like everyone’s but it was a life and marriage saver for me.
Living daily with PCOS
Since the hysterectomy, I have been placed on hormone replacements (HRT) that help with the mood swings and hot flashes. A hysterectomy does not cure PCOS but it does help with the wild ride from hormones produced by damaged ovaries along with removing all possibilities of ovarian and uterine cancers.
There is no cure, only methods to manage it. A diet focusing on protein and low glycemic foods with the addition of good fats such as olive or walnut oil goes a long way in fighting insulin resistance. Exercise is also key in reducing the symptoms of PCOS, although I admit I am not the best practitioner of this.
I have recently been placed on Metformin and have lost to date 40 pounds over four months. Quite a number of studies indicate Metformin reduces insulin, testosterone and glucose levels -- which reduces acne, hirsutism, abdominal obesity, amenorrhea and other symptoms. My experience has been mostly positive. The weight started coming off immediately but the side effects were not pleasant until my body adjusted to the medicine.
If you are suffering from PCOS, my best advice is to educate yourself. The internet opened up my world to many different paths I have used to begin the healing process from the devastating symptoms of this disorder. Here are a few great links you can explore:
Resources for PCOS
About the Author
Catherine Dean is a freelance writer, gardener, quilter, and blogger. Her professional background includes nonprofit program development, grant writing, and volunteer management. She holds a Bachelor of Science in Mass Communications from Georgia College & State University.
Her blog, Sowing A Simple Harvest, chronicles a modern couple trying to live a simplistic, sustainable life. To explore her professional credentials, visit her website. She can also be followed on Google+.