Diagnosed.. Eventually.

It's difficult to say whether or not finally putting a name to this monster is a positive or a negative experience. I suppose it's a bit of both. First of all, it's darn near impossible to get diagnosed. There are so many symptoms of PCOS and not any one woman has the same symptoms as the next.  Some have multiple, healthy children while others struggle with infertility their whole lives. 

So. As I was saying in the previous post.. it was [past] time for a specialists opinion. I needed some answers so we could get this thing figured out.  First, I went to a regular endocrinologist. She was nice, and  in-network for my insurance. Perfect! Well, we did the excessive blood work--literally everything from cholesterol to STDs to FSH. It was 'hard' on a few of the hormone tests because neither myself or my Dr had any way of knowing which day of my cycle I was in, because that year I had only had 3 periods (this was October, 2009). My guess is that your hormone levels vary in range depending on if you're ovulating, menstruating, etc. That's my guess, at least.  Either way, I get an email from my Doctor--who specializes in diabetes and hormone/endocrinology--everything is fine. No STDs (thank God), everything else is within range. A sigh of relief. But wait, what the hell? Is that it? I made an appointment to go see her the following day. We went over my blood work results briefly. I nodded and agreed on most of what she had to say. My total testosterone was on the high end of the 'normal' scale. But, still in range. There were a few other things that were the same result. High end of the scale, but still... on the scale. 

I finally asked. Well, what could be the problem then? I had come to her with the suspicions of being diagnosed with PCOS. She had asked me what made me think I had PCOS. I said, well mostly the absent period, but there were a few other minor signs. After going over my blood work she said there were plenty of other things it could be. One being, unexplained infertility, or premature ovarian failure, or that I was entering menopause early and had no eggs left. All of which there is zero treatment for. I was in tears leaving the Dr office. 

Almost a year to the day, I got in a tiff (with myself) as I was going back to that diagnosis in my head. I had joined a support-type message board that I hadn't been active on at all since the lack of PCOS diagnoses.  I was sifting through some posts about how people had frequently been misdiagnosed in the past; most had gone through 2 or 3 doctors before finally getting positively diagnosed with PCOS! This instilled a bit of hope that there might be a way I could have also been misdiagnosed. A sidenote: No one HOPES to get this disease. No one in their right mind. But, after being told I had premature ovarian failure, I was hoping for a light at the end of the tunnel. Any light. After a year of casual research, I had come to find out that there are in fact medicines for ovulation, both prescribed and holistic. 

Again, I made an appointment with an Endocrinologist. Though this time, I chose a Reproductive Endocrinologist. I had learned that RE's had to first be OBGYNs, then study endocrinology--and, voila! We have a reproductive endo. 

I immediately felt at ease with this Dr.. Partially because I had already heard the worst diagnosis, in my mind. How bad could it be, really? This Dr, I loved. And I do mean love. The walls of the exam room were plastered with Christmas cards, birth announcements, and photos of successful pregnancies and healthy offspring. It made me happy.

Dr. Chen came in, introduced herself, and was jolly (yes, a bit overweight--which really made me giddy). She took me to her office where she then began from the beginning. From my first period to now. I mentioned my previous diagnosis. She didn't give it the courtesy of a thought or a mention.  She said from what I'd told her, she suspected PCOS. I was shocked. I hadn't mentioned it once. She took me back to the exam room for a transvaginal ultrasound. And there on the screen was something I'd seen in ultrasounds all over my SoulCysters message boards: Polycystic Ovaries. A dark, egg shaped ovary (both, actually), lined with the typical 'string of pearls.' I said, ".. is that..?" She confirmed and said without a doubt I had PCOS. 

She ordered blood work to firm up the diagnosis. I went and did it the next day and came back to her office for a follow up a week later. Why the previous Dr hadn't caught anything in the blood work was beyond both of us. I didn't have diabetes, thank goodness--but my insulin was through the roof.

So, what next?

What's wrong with me?

 I can't remember a time in my life where I felt like a normal girl or young woman.  My period has never been regular. When it first started, sure.. it's normal not to be regular. But that regularity of a monthly period never came. The most regular I ever managed to be was 6 periods a year. About once every two months. I always knew this wasn't right. I saw a doctor when I was about 15 or 16 with my mother and we were told that it was completely normal not to have a regular period for the first few years after getting your period. Life went on. At 18, still knowing something was 'wrong' with me, I battled with the need for getting a pap. I researched it online and decided I was too scared to find an answer to my problems. Was it cancer? My grandmother died of ovarian cancer. I didn't like any of the plausible options I could come up with in my 18 year old head, so I made the decision never to get one.

Finally, at age 26--I had my first pap smear. What had finally spurred my butt into gear was that I had just recently been married and the subject of our eventual offspring came up. Before we even started actively trying to conceive, I knew what I had to do. My Dr said that they would call me in a few days if something came back abnormal. Those were the longest few days of my life. I received a letter in the mail from my Dr's office saying that my results came back completely normal, and to call for another appointment, same time next year. A sigh of relief. I was fine then, right? At this point, I was so uneducated in the field of  female reproduction, I had no idea this was just the first step to many others I would soon have to take.

Now came the next hurdle. I always had this gnawing feeling in the pit of my stomach that I was going to have difficulty getting pregnant. As I got older, that feeling turned to a certainty that I would never be able to become pregnant. I wasn't even entirely sure why. I knew periods should be normal in a healthy woman, but I had no idea you could still ovulate in the absence of your period, that there were drugs to help you menstruate/ovulate.

Still knowing something was amiss, I turned to the internet. Wow! Why hadn't I done this sooner? Oh yes, that's right.. I was scared to death of what I may find.  Now that I was thinking not only about myself but my new husband, our furbaby Pavi and prospective mini-Garcia's--well now that changed everything.  I needed to find out what was wrong and fix it as soon as humanly possible. This led me to (among other things: many other things) PCOS. I started scrolling through symptoms and darn near swore out loud when I came across the myriad of things that were related to PCOS. No, not just infertility and menstrual irregularities.  Seemingly unrelated things. Weight gain, predominately around your midsection. Check. Irritability and severe mood swings. Check. Hirsuitism. Wait.. I always thought that was because my father was Arabic and it was a dark skinned thing? Check, check. And, as I would later learn, a whole slew of other blood work related things that attributed to my difficulty in losing and maintaining my weight my whole life.

I continued on and became quite the avid internet article reader.  At this point, I knew I needed to see a Dr. A specialist. Someone who could really help me sort through this..