A Different Kind of Success Story

November 13, 2011

My PCOS story really began in January of 1993, after discontinuing the use of birth control pills. I was 19 years old when I stopped taking the pill, I had with my high school sweetheart since I was 15 years old, and on the pill since I was 16.

My PCOS story really began in January of 1993, after discontinuing the use of birth control pills. I was 19 years old when I stopped taking the pill, I had with my high school sweetheart since I was 15 years old, and on the pill since I was 16.

Before I started taking birth control pills, I had normal periods, about every 30-35 days. While on the pill, I gained weight -- but passed it off as and blamed the birth control pills. By 1993, I was 50 pounds heavier -- I said "enough of that!"...and I stopped taking the pill.

After I discontinued the pills, my periods stopped...completely. I panicked and bought pregnancy test after pregnancy test. When they all came back negative, I mentioned my lack of menstruation to my family doctor. I was told that women often experience irregular cycles after discontinuing the pills, and my body just needed to regulate itself. Okay, no problem!

Two years later, I still had not menstruated since going off the pill. My high school sweetheart and I were now married, and thinking about starting a family. My weight had continued to climb; and for the first time in my life, I started developing acne.

I finally went to see an OB/GYN in April of 1995 after experiencing hemorrhage-like bleeding that scared me to death. I had gained (total) about 100 pounds. As far as I could tell, I had not had any changes in my eating and exercising habits -- unless I take into consideration the extensive dieting and exercising I had done to try to take control of my weight problem.

The OB/GYN performed a usual exam, no bloodwork, and declared my bleeding to be "Dysfunctional uterine bleeding." I mentioned my lack of menstruation over the past 2 years, and she told me to "lose weight" and my periods would return. She handed me 2 sample packets of Provera, and told me to take them if the bleeding started again. I had no idea what the pills were for or how they worked, or what my problem was.

For the next 3 years, I didn't menstruate. I watched my friends and family members get married and have babies, and I spent thousands of dollars on diet programs and exercise equipment, sometimes literally starving myself to try to take the weight off.  The diets never worked, the weight kept coming on. I started to notice unusual hair growth on my body and thinning hair on my head. I was depressed, obese, hairy in some places, balding in others...and infertile. 

In 1997, I started participating in an e-mail group comprised of women who were having fertility problems. After introducing myself, many women in the group responded to my story, telling me that I sounded like a classic PCOS sufferer. They urged me to go to the nearest OB/GYN! (I had been AWOL from OB/GYN's for 2 years at that point). I was reluctant to go to another OB/GYN just to be told that I was too fat and all I had to do was lose weight.

For the next several months, I starved myself and lost 60 pounds. During this time, I became involved in more infertility support groups, and I researched PCOS -- I was shocked at what I found! No, it is not normal to go for years without a period -- regardless of body weight. I had most of the PCOS symptoms described...why hadn't the OB/GYN looked into it? At the very least, didn't she realize that it was dangerous for me to not menstruate?

I was mad and on a mission. I made an appointment with a different OB/GYN. I mentioned my concerns about PCOS and lack of menstruation, and our desire to have a child. This OB/GYN did a blood panel on me, told me that my levels (aside from low progesterone because I wasn't ovulating) looked fine, and I didn't have PCOS. This doctor also blamed my weight, even though I had lost 60 pounds. She wrote me a prescription for Clomid (a fertility med) to induce ovulation, gave me a Provera shot to bring on a cycle, and sent me on my way. I did 2 cycles of Clomid without any success, and gave up. Since I wasn't starving myself anymore, the weight came flying back on.

Since that appointment 2 years ago, I have gained all the weight back (and even more), and I have been severely depressed. I gave up on the dream of ever being able to have a child...I was told that my infertility was my fault (because I was fat), and it just seemed impossible for me to lose the weight. I stopped participating in infertility groups and support boards, and I stopped researching.

At that point I was very informed about PCOS -- and I felt certain that I had it, but doctors would not listen to me. I just resigned myself to being fat and childless for the rest of my life, and felt terrible guilt every time I thought about my wonderful, loving husband -- and thought about him never being able to be a father. Not only did I feel ugly and fat, but I felt that I failed my husband by not being able to become pregnant. I couldn't even menstruate on my own! I didn't feel like a woman at all. 

Earlier this year though, when I reached rock bottom with my depression, I decided to give it one last shot. I made another appointment with the same OB/GYN who had prescribed the Clomid, but I cancelled the appointment immediately after learning from her partner (my mother's OB/GYN) that they do not know much about PCOS, and are not able to diagnose it! My mother's OB/GYN recommended a doctor who DID know how to diagnose PCOS, and was willing to prescribe Metformin (Glucophage) to PCOS patients with insulin resistance.

I had to wait for 2 months to see this doctor; and pay for the appointment out of my own pocket because our insurance wouldn't cover it, but it was worth it! I just had my appointment on July 5th, and after all these years I have FINALLY been diagnosed with PCOS...I almost feel proud! I DID know what was wrong with my body, and it is NOT my fault! Instead of this being bad news, I feel optimistic about myself and our ability to have children -- for the first time in YEARS. I almost feel like crying as I am writing this! My bloodwork showed that I am insulin resistant, and I just took my first Glucophage pill last night. I may not be pregnant yet; but to me, I consider this a success story!

I still have a long road ahead, treatment of my PCOS is going to involve Glucophage, a low-carb diet, and exercise. I have Medroxyprogesterone to bring on my cycles until my body starts to (hopefully) correct itself and menstruate on it's own. I'm now 27 years old, and I thank GOD that my marriage has been able to survive since this all began...and I thank God for my husband. I don't know what would have happened to me if I didn't have him in my life.

I want to get the word out to other women about PCOS, but I don't really know how. I lost 6 or 7 of my childbearing years to PCOS, but it's not too late for me. I worry that there are women out there who are losing the last precious few childbearing years they have left...because their PCOS is going undiagnosed by doctors who either don't know enough about PCOS or don't care. PCOS can be treated! And you don't necessarily have to spend thousands of dollars on dangerous fertility meds and procedures, or take meds to treat the individual cosmetic symptoms. If your doctor claims that you do not have PCOS, and you think you do...find yourself a doctor who specializes in PCOS, or find an endocrinologist. Get second opinions, get third opinions. Most importantly though, educate yourself and know your body! 

My body tried to tell me for years that there was something wrong, but I didn't know what it was saying, and when I finally figured it out, the doctors didn't listen to me. I can't stress it enough, doctors don't always know everything, and sometimes you have to keep looking until you find a doctor who knows your body as well as you do.

Good luck to all of my fellow cysters, and to all the couples out there dealing with PCOS and infertility. God bless!