Often times I am asked, “How long have you had PCOS?”. My answer: Officially for almost two years but really, since the first day I started my period. My thrust into womanhood was very traumatizing to me. I was 12, in sixth grade, and it was Halloween, (which is a holiday and time of year I hold to the same standards as Christmas), and it was in gym class; yes, gym class. I’m pretty sure the experience could not have been more stereotypical. I remember feeling as if I wanted to crawl under the covers and wake up about a week later when the whole thing would be over. I didn’t even want to go trick-or-treating. I went home and slithered into an old Mr. Potato Head costume because it was big and poofy, just how I felt.
Symptom #1, Insulin Resistance:
The rest of sixth grade was no more fun. All of a sudden I was plagued with dizzy spells, headaches, chills, and lack of energy. (I was an avid dancer and gymnast growing up so having little to no energy was uncommon as I was active and in excellent shape.) After a couple trips to the doctor’s and an enjoyable fasting glucose test complete with the nasty orange drink I was diagnosed with Hypoglycemia.
Symptom #2, Low Progesterone/High Testosterone:
Unfortunately seventh grade did not get any better. People always say that teenagers have hormones that are out of whack, but I was certainly an exception from my peers. I had incredible mood swings and irregular periods (which of course those around me attributed to my activity level and age). I was what seemed to be borderline bi-polar and had hormones raging. My mother, who has always been a supporter of natural supplements, herbs, and minerals, was seeing a doctor who specialized in women’s hormone therapy as a primary doctor. Off to this doctor I go. She determined that I had significantly low levels of progesterone and started me on a steady dose of prometrium to help level out my hormones. (Funny, I still take prometrium today to induce a period when I haven’t ovulated). This was also when I started having mild irregular hair growth that I was (and still am) careful to have removed at all times. I would find myself wondering, is this right? Do other girls have these same problems? I just wasn’t sure.
Symptom #3, Pelvic Pain and Cysts:
By 16 I was wrought with female issues that had me in and out of doctor’s offices and hospitals. I hated it. I wanted to be normal. No one doctor could figure out what was causing me so much pain and what seemed to be cysts and inflammation on my ovaries. I had test after test and surgery after surgery. Is it PID (Pelvic Inflammatory Disease), Endometriosis, what is it? By 17 it seemed to doctors like the simple solution was to put me on birth control to mask the symptoms of a disorder that no one seemed to be able to figure out.
At 18 I was diagnosed with HPV (Human Papilloma Virus). Was this the answer I had been looking for? What is this HPV that was just recently easily recognizable by the medical community? I was closely monitored for a couple years with colposcopy tests. Then one day I moved from mild cervical displasia to pre-cancerous; and yet my doctor still wanted to “monitor”. I’m sorry, but I don’t think that taking a couple snips of my cervic every three months is the most proactive way to treat a young woman of child bearing age who wishes to have children one day. What if one day you take that snip and it is full-blown cancer?! Time to find a new doctor.
I went to my primary doctor who did a cryo-freezing of the areas but unfortunately the cells decided they enjoyed the super cold temperatures and multiplied ferociously over the next six months. On to a new OB but this time I went to a couple for multiple opinions and this time they all said the same thing, LEEP. LEEP is a procedure done in the hospital under anesthesia in which they literally burn off the bad cells with a small hooped instrument. Thankfully, after my three and six month check up the pre-cancerous and HPV cells were long gone and have never come back. So, I am healed right? All of the issues I had from my teenage years were just a distant memory right? Wrong.
Symptom #4, No Menses/Ovulation:
Shortly after a beautiful wedding to the love of my life we quickly decided to begin trying for a family. I went off of birth control and didn’t have a period again. I knew my yearly check up was coming in a couple months so I decided to give my body some time and then I would discuss it with my doctor since I was going to talk to her about pre natals and such anyways. Three months after stopping birth control my period had still ceased to appear. I spoke with my ob/gyn about this and she quickly said that because of my history she wanted to do some tests. I thought the worst but couldn’t even imagine what the worst was going to be.
My blood work came back as it always had, slightly elevated testosterone and very low progesterone. On to the ultrasound. I knew something was wrong as soon as my ultrasound went from a surface one to a trans-vaginal during the test. I will never forget the day my doctor called to confirm my fears. It was a hot summer day and I was just getting ready to leave work to head to a memorial for a dear friend/colleague who had taken his life after being diagnosed with cancer the month before. My doctor told me to do my research and learn all I could about PCOS. She was starting me on Metformin to see if we could get a period to come. I did a quick Google search to get a synopsis but had to leave. By the time I was on my way home that evening I was sobbing on the phone to my husband begging him to come home from work early, something I have never done. I felt like the world was crashing down on me after the loss of a good friend and the news of my infertility fate.
Within a couple days I picked myself up and hit every Borders and Barnes and Noble in the area with a list of books to gain as much knowledge on this Polycystic Ovarian Syndrome as I could. My life had changed so drastically and there was so much to understand and change in order to adapt to PCOS. I still don’t have a period on my own, at least without the help of a ovulation-inducting medications or prometrium but I am learning how to best handle and treat my diagnosis.
However, still to this day, almost two years later, I sit and wonder, what if I hadn’t allowed the doctors to ignore my mass of symptoms when I was a teen? What if I hadn’t ignored my symptoms and sought answers? Would I be pregnant or have a baby right now? I will never know but I do know that I will never ignore the opportunity to share my story with anyone; especially when I never know if someone will benefit from hearing about what I have been through. When it comes to infertility or PCOS or any other fertility-effecting disorder ignoring it will not make it any better.
To learn more about infertility please use the following links:
- http://www.resolve.org/infertility101 (Basic understanding of the disease of infertility.)
- http://www.resolve.org/national-infertility-awareness-week/about.html (About NIAW)