PCOS, IR, and Me: My Story

This article contains personal and medical information. If you are uncomfortable knowing that much about me, stop reading. I would prefer if this article made its way around the world so PLEASE read on. Share this with your sisters, mothers, daughters, aunts, nieces, etc. especially if they are overweight and have some of the other symptoms I will list at the end of this article. I am not embarrassed to share this information, in fact, I welcome the opportunity.

When I was young I was normal sized, literally, right in the middle of the growth charts. About as average as a kid gets. That changed dramatically when I was 8. In the summer I was playing t-ball and running around with my cousins yet my body gained about 50lbs that summer without a diet change.I wasn't guzzling soda or gulping down seconds and thirds. Nothing was different. That fall I had to get my first bra at age 9. It was a 36C. To put that into perspective for all those not familiar with bra size, the average woman in America is a 34B as an adult! The need for a bra was caused by both the weight gain and a drastic change in hormones, though I didn't know that at the time.

The first indication that something was wrong came when I was 11, weighing nearly 150lbs. I began to have severe lower abdominal pain mostly on my left side. The doctor I went to, whose name I thankfully can't remember, told me it was nothing to worry about because I was just having premenstrual cramps. The problem that my mom and I explained to him was that I had never had them before neither was there a family history of any PMS symptoms. He basically rolled his eyes and suggested that I might feel better if I lost weight. Really? That hadn't occurred to me.

Needless to say I didn't go back. I did develop an unhealthy distrust for doctors because apparently they were all morons who made assumptions and suggestions without bothering to listen to me. Consequently, I avoided any doctor until the pain was so severe I missed days on end of school lying in bed crying because there were no answer or hope. I was 14 then. Through various circumstances God led me to another doctor who didn't think I was a fat slug who did nothing but search for attention by making up the pain.

Over the following 3-4 months I endured more tests than the average person endures in their entire life. I had countless blood tests, ultrasounds, and examinations. I had 2 exploratory CT-Scans with the barium shake and the barium enema (which is as fun as it sounds.) I even had a colonoscopy because they thought I might have colon cancer. When all was said and done, all they could tell me was that I had a cyst on my left ovary. It needed to be removed immediately. 3 weeks later I had surgery to remove my left ovary, fallopian tube, and an 8 lb ovarian cyst!It had been growing unchecked since that first doctor when I was 11. No wonder I looked pregnant.

After the surgery, the surgeons told my parents that the cyst had grown so large for so long that it was hemorrhaging back into itself and was turning gangrenous. It would have burst within 2 weeks releasing all those toxins into my body. More than likely it would have been fatal. On the upside it was pretty cool to have an elevator pass at school and show everyone my staples and scar and to tell my friends that the doctor wanted to remove my belly button. That would have looked even cooler! He didn't actually have to remove it. He went around it instead.

So after all this, one could reasonably expect a diagnosis, right? Such was not the case for me. All they said was that I had a "hormonal imbalance." They gave me birth control pills to regulate my hormones and told me to try to lose some weight. Again with that. As if I hadn't been trying that for years. Not to mention the fact that a major side effect of birth control pills is weight gain.

Here I go through my teenage years at 200lbs and gaining, on the pill, getting acne, losing the hair on my head but growing some on my chin and neck, having depression, not being able to eat because of nausea, constantly swinging between diarrhea and constipation, and never being normal. How did I deal with it? Apathy. I decided that since I couldn't lose weight why should I even try? I began to eat anything and everything in mass quantities. I decided that I would hop in the band wagon of fat women who "loved" their heaviness and really weren't unhealthy. (That great line from Hamlet, "The lady doth protest too much, methinks" comes to mind immediately.)

Apathy was a rather nice band-aid for the wounds I was inflicting on myself and those left by others. I got through high school with another 30 lbs and a bad attitude. Continuing on my road of apathy and distrust I avoided doctors except for my gynecologist who still didn't have a definite diagnosis for me. She just kept pumping me full of birth control pills.

Fast forward to age 22 when Thad and I decided (as if it were our decision) that it was time to have kids. I stopped the pills after talking to my doctor who wished me luck and told me to try to lose some weight. I had a couple of false positive pregnancy tests and no periods over the next 15 months. while I didn't mind the absence of of them I was concerned. I finally asked my gynecologist why no one knew what was wrong with me. She said, "well, its probably your PCOS. It makes it hard to get pregnant." UHM, my what? I told her I had no idea what she meant. I had never heard of PCOS before. She scribbled something in my chart and told me to have the nurse give me a referral to an endocrinologist. A what?

I went to the new doctor. I wasn't happy about it though. I had been having my blood drawn and an "intimate" exam every three months since I was 15. Why did I need someone else to explain this to me? Fortunately, this guy was good. The first step of the appointment wasn't good - I had to weigh. For the first time in my life my weight frightened me. I was 25 and weighed 308 lbs. I'll never forget that moment. It took every ounce of strength I had not to cry. I knew part was from the whatever that had been going on in my body but, sadly, I knew that I had contributed to the monstrous beast that perched on the scale.

The appointment got better. He actually had answers. He told me that I did, indeed, have Poly Cystic Ovarian Syndrome but that wasn't the root problem. I had something called Insulin Resistance. (Before you think it, ask it, or say it...NO, I'm not diabetic. But I could be someday.) IR is a condition in which the insulin response to food intake is insufficient. It causes the body to think it is always in "starvation mode." My muscles are deaf to the insulin message and do not take it in. Unfortunately, my fat cells think I'm never eating enough no matter how much or how little I eat. In that mode the fat stores everything! I could live on water and lettuce and still gain weight at an alarming rate. Thus the idea that just better nutrition and exercise would fix me up is FALSE. I know its false because I have tried it. I spent one year of my life eating 1200 calories a day and doing a 2-hour workout, 4 times a week. In that year I lost 4 lbs. Yeah, only 4.

This insulin issue causes my estrogen and progesterone to be out of whack and my testosterone to be really HIGH! The testosterone is why I grow hair in all the wrong places. It all contributes to the weight gain. So after all this illumination, for which I was incredibly grateful, I asked the obvious question: How do we fix me so that I can have babies? He reply wasn't what I wanted to hear. "It would help if you lost some weight." I gritted my teeth and stifled some frustration. Before I could scream about my inability to lose weight he said, "The problem with that is IR and PCOS make it nearly impossible."

I was dumbfounded. Finally someone realized that other than me. He gave me some samples and a prescription for Glucophage, a diabetes medication. But I'm not diabetic. He knew that, of course, because he had his head on straight. He said my periods would regulate and my hormones would come closer to normal. As a result and a big bonus, if I began to eat better and less I would see gradual weight loss. darned if he wasn't right.

Since that visit I have had to find another endocrinologist who is probably the best doctor I've ever come across. He is remarkably intelligent with an insatiable appetite for research but he doesn't run headlong toward something just because its the latest thing. I also have a new OB/GYN who I found through my endocrinologist because I wanted someone who would listen to him and understand that PCOS is NOT a gynecological problem.

Now I am surrounded by a wonderful team of physicians that understand my faith and my desire to not be a pincushion. I believe wholeheartedly that these men were put in my path to bring about God's will in my life. I was designed and created from head to toe to grow, birth, and nurture children. It was and still is the desire of my heart. When I surrendered my desire to His will and timing I got my answers and my health.

So what are the results of my journey?

* 3 babies I shouldn't have especially with one ovary.

* A dramatic weight loss (from my all-time high of 320 lbs to my current pre-pregnant weight of 243 lbs)

* The knowledge that I know my body better than anyone and trusting that meant booting the bad doctors.

* Conventional medicine isn't inherently bad. Find doctors that understand your beliefs and can work with them. All of my physicians understand that I don't credit them with my health improvement or my 3 miracle children. I credit God for leading me to them and giving us all wisdom in my situation. I believe that each child was a direct, Hand-of-God miracle much like Hannah (1 Samuel 1)

* I learned to look at women and girls who look like me in a different light. I used to see them the same way everyone else does. I thought they are fat because they eat too much. My experiences have taught me to wonder if she doesn't know that she might be fighting a losing battle against an enemy she doesn't even know exists. Occasionally, I even approach strangers and implore them to see an endocrinologist about PCOS and IR.

* I now know that Poly Cystic Ovarian Syndrome is NOT an illness best treated by a gynecologist. It is not so much reproductive but hormonal. All hormones, even female ones, belong in the domain of the endocrinologist. It is also not a condition best treated by a fertility specialist. When you treat the underlying condition, the infertility usually resolves.

* I don't take diet advice from just anyone. For some reason people are compelled to share their diet secrets with me unsolicited. "I cut out high fat and lost 30 lbs." or "I only eat organic." or "I cut out everything from a box." or "All you have to do it eat more fruit and less red meat and you could look like me." or "Never eat anything after 6pm." (The ridiculousness of this statement is something I could write about endlessly. Weight is about math - calories in minus calories out. there is no magic time of day.) Nope, I have a filter now. I think these people are so uncomfortable with my size they want to be my rescuer. A nice thought but very belittling. I know what food to eat, how much, and when. I also rarely share my own diet advice for the same reason. I only do it when asked.

Here are some of the hallmark symptoms of PCOS:
*Fewer than 8 periods per year.
*Heavy to very heavy periods.
*Irregular bleeding.
*Sudden, unexplained (non-diet induced) weight gain
*Fertility problems.
*Adult acne.
*Hair growth in places that are typically male: chin, neck, upper lip, chest, abdomen.
*Balding or thinning hair on head.
*Darkening or discoloration on neck, face, between folds of skin, etc.
*Skin tags.
*Type 2 Diabetes or a family history of Type 2 Diabetes (particularly if your mother had Gestational Diabetes while pregnant with you.)
*Sluggishness, lack of concentration, shaking, uncontrollable hunger and mood swings.

You can take the quiz here for a better idea of your risk. I suggest printing it and taking it to your physician to discuss your risk and have the blood tests.

If you live in the Nashville area and believe you have PCOS, please send a comment with your email and I will give you my doctor's information if you do not have an endocrinologist.