Howdy!
I just started a PCOS group on MySpace! Here's the introduction I just posted on it, and the link to the Group. I hope you will join me!
http://groups.myspace.com/pcossupportgroup
My name is Alena, and I am twenty-one years old. I live in the beautiful state of Montana, and am happily married to my best friend, Nick. I love to hang out with friends, and have many hobbies including scrapbooking, web design (beginner still), journaling, reading, writing, and all sorts of music including singing. My husband and I are very social and have friends over for dinner and game nights regularly. We are approaching our first anniversary, and are excited to see where life takes us!
When I was twelve years old I hit puberty, and began to have unexplained medical symptoms. During a routine school physical it was suggested to my mother that I may have Polycystic Ovarian Syndrome, and she was encouraged to take me to a regular doctor for evaluation. After calling four different doctors and being turned away by all of them, my mother decided they must be right - they told her that PCOS was a "mental issue" and that I was a hypochondriac and was just looking for attention. From that point on my continuous stream of strange symptoms were disregarded as normal pains that everyone has, and that I just had an extremely low pain threshold.
I have been to several doctors since finishing high school, and they all to me that I was totally fine, and just needed to lose weight, labeling me "morbidly obese" and smiling condescendingly at me until I left in defeat. I began to wonder if maybe they were right - maybe it WAS all in my head.
I got married on March 25th, 2007, and I started birth control two months before the wedding. My husband and I were married only a few months when a combination of limited finances, unpleasant side effects related to my artificially shortened cycle, and a desire to start a family led us to discontinue use of the birth control pill. At first, I closely monitored my cycle, eager for it to be late so that I could take a pregnancy test. I knew that it could take a few months to conceive, so even though I was disappointed when my period showed up right on time, I wasn't worried.
Then it happened. My period was six days late, and when it came it was only four hours long. I wasn't put off by the appearance of a light flow as a friend had told me that sometimes a woman can bleed lightly when she first becomes pregnant. But when I tested, I got a negative reading. Again, I was not discouraged; another friend told me that she was four months pregnant before she registered on a urine-based pregnancy test, and even had regular periods during that time! When my next period failed to show up, I was elated, and completely convinced that I was soon to be a mother.
I went to a local walk-in clinic, fully intending to request a blood test to confirm my pregnancy. Two hours before I went in, my period started. I was a little worrid, but because of my friend's testimony I was still fairly convinced that I was pregnant. After all, I had multitudes of early pregnancy symptoms, and "felt funny."
As it turned out, I had a raging urinary track infection, as well as what I now no was a flare up of PCOS. The only symptom of the UTI that I wasn't exhibiting was the itching that is the ussual first sign of infection, and it turns out that all the symptoms that I assumed were signs of pregnancy were also UTI symptoms!
I left the clinic with a prescription for an antibiotic, and a heavy heart. I had been off birth control for five months, and all I had to show for it was a myriad of uncomfortable symptoms and the embarrasment of having told all my friends and most of my female coworkers that I thought I was pregnant. But even though a tiny seed of worry was taking root in my heart, I was still confident that soon I would be an expectant mother.
As the next months went by, my symptoms increased in number and severity. By the end of November, 2007, I was in such a state of dicomfort, pain and exhaustion that I got fired from my job because I could no longer stand for the duration of my shift, and had missed numerous days due to the extemity of my symptoms! By this time I was scared to death, and knew I needed to see a doctor.
I went to a doctor in a small clinic, and had the most unsatisfactory medical experience of my life. She let me get about 1/5 of my symptoms out, and that my last period was thirteen days late and then extremely heavy and painful, before cutting me off. She palpated my abdomen (my most pressing complaint was for extreme pain in the left side of my lower abdomen, and general digestive upset and extreme discomfort throughout), and after determining were I hurt the most, and telling me that the sharp pains in my stomach were "strange" but had "nothing to do with Irritable Bowel Syndrom, so we won't worry about that," she very calmly told me that I had Irritable Bowel Syndrome and had most likely experienced an early miscarriage.
I was devastated! The tone of her voice and the look on her face told me she could easily have been talking about the weather, for all the concern she had for the effect of her pronouncement. I tried to ask about my other symptoms, but she obviously didn't care what was wrong with me, and I couldn't take being in the same room with her anymore, so I gave up and left.
I knew I needed to get another opinion, but didn't know where to turn. Thankfully, my aunt suggested that I try and see someone in the office her doctor practices from. Two weeks later I met my current doctor, and boy! was I impressed! She allowed me to tell her all of my symptoms, even the ones that didn't make a lot of sense, and she took an extremely detailed personal and family medical history, asking questions that would never have occured to me! I had the most thorough new-patient check up of my life, and left with a renewed faith in the medical community.
Unfortunately, that wasn't all that I left with.
My doctor told me she believed that I had Polycystic Ovarian Syndrome, and possibly diabetes. I got a full blood workup done, as well as an ultrasound. Since it was only a few days until Christmas, it took a while for the results to come back, but I finally have a confirmed diagnosis.
I have Polycystic Ovarian Syndrome, and Hypothyroidism. Both of these cause excess weight gain, and fatigue, as well as a host of other problems. I am not, and have never been, a hypochondriac - I have had PCOS since I hit puberty when I was twelve years old. The nurse was right.
I am getting ready to start my treatment, which consists of a thyroid medication, a glucose regulator that will also assist in weight loss, an androgenen regulator that will reduce male hormones (such as testosterone) in my system, and birth control, to allow my ovaries to heal (I currently have multiple tiny cysts on both ovaries, and the ones on the left have begun to rupture, causing intense pain). I have to get my thyroid checked in six weeks to make sure the dosage of the thyroid medication is correct, but otherwise I do not need to see the doctor again until next December!
When the doctor first told me what she suspected I had, I was in a state of shock. No one wants to hear that they have an uncurable disease, much less one that can cause you to go bald and grown facial hair, but for me the pain went even deeper. The fondest desire of my heart has always been to be a wife and a mother. I am a wife now, and very happy, but I was devistated when I found out that PCOS can make conception extremely difficult, and in some cases impossible. I felt like my life was desentigrating!
I am so happy that I decided to research PCOS on the Internet. One of the search results was for
www.soulcysters.com, a forum community for women with Polycystic Ovarian Syndrome. I became a member immediately, desperate for knowledge and reasurance that my life and hopes for a house full of children were not over. I found exactly what I was looking for!
Though my husband and I made the decision to place me on birth control for a time, I am filled with hope that in time I will be a mother. It may take years, and even fertility treatments, but I am confident that one day I will hold an infant in my arms and know that the wait was worth it.
Thank you for joining my community here on MySpace! I hope that this group will be a good source of friendship, support and community for you in your journey. PCOS does not have to consume you! Please allow your sisters (cysters, lol) to come along side you and help you see that life can still be full and joyous!