October 26, 2011-I received my diagnosis. Polycystic Ovarian Syndrome, or to most, PCOS. I will never forget that day because it came after months of struggle and heartbreak and I finally had my "answer" of what was "wrong" with me. This mysterious syndrome was what was keeping me from what I wanted more than anything-a baby.
This was difficult for me to talk about for a long time, but I am one of the lucky ones who was blessed, despite this unfortunate diagnosis. A year ago I never in a million years would have expected to have this beautiful angel in my life. I want to share my story of PCOS so that other women who are given the same diagnosis might be given hope that YES, you can overcome it. We may never get a cure, but we can learn to live with it and manage it and even conceive with it! I am sharing my story in the hopes that it will help someone like me, and to spread awareness of PCOS. It is my hope that one day women won't have to just live with and manage it, but that there will be a cure.
PCOS is still such a mystery to the medical profession and most women that have it don't even know. Yet it will affect an estimated 5 to 10% of women of childbearing age (ages 20-40), and at least 30% of women have some symptoms of PCOS. More than 50% of women with PCOS will develop some form of insulin resistance. It can lead to infertility, endometrial cancer, diabetes, heart disease, high blood pressure, and depression. The cause is not known and no two women with PCOS have the same set of signs or symptoms. It continues to mystify doctors. There is no cure for PCOS.
(Source: http://www.womentowomen.com/insulinresistance/causesofpcos.aspx)
I will start at the beginning.
I had always been irregular. I figured it was no big deal and in college was put on the pill to regulate my monthly cycles. End of story, or so I thought. I figured that when I was eventually ready to try for a family, I could just go off BC and it would happen immediately. After all, in school, and on TV we are taught how easy it is for a woman to get pregnant. "It only takes one time." Why wouldn't it just happen for me?
Hubs and I were married over a year, had good jobs, a home of our own, steady income-we were ready for a family. So in February 2011 I stopped my nuva ring. I will tell you that within a few days of being off of it I felt SO much better. I had more energy, my skin cleared up, I didn't have any more headaches (for years I had SEVERE debilitating migraines that kept me in bed and could only be relieved through prescription medicine), I lost weight, and I just felt "right." I can't explain it better than that, I just felt like ME again. I know deep down that it was my body finally starting to adjust to regulating itself, without artificial hormones. I felt so good and was so excited to start trying for our family.
For two months I was what society says is "normal." 28 day cycle, textbook! I downloaded one of those apps that is supposed to tell you when you are ovulating and was ready. I had my green days on my calendar so I knew when I was supposed to be fertile. We were "not trying, not preventing" at that point but I was so excited to finally have my body back and not have hormones controlling what my body was supposed to be doing naturally. Well after two months, I started having longer cycles. I went from 28 days to 35, to over 40. I figured my body was just getting back in its own rhythm. I wasn't concerned, even when we started really trying. I figured that if we just tried it would happen. That's how it works in Hollywood after all, right?
In July, I went to a new OBGYN, Dr. P. (who has since retired, which is a huge loss to the medical community as he was wonderful!) I was just having my annual checkup and I let him know we had been trying for a few months. He told me that after being on BC for a long time it can sometimes take a while for the hormones to leave your body and that could be the reason for my longer cycles. He told me to watch them and see how they went and let him know if they continued to become longer. Well that was the beginning of July. I had had AF at the end of June. July and August came and went with no sign of a new cycle starting. I was going broke buying ovulation kits and basal body temperature thermometers and anything else the Internet told me to use. I didn't understand why it wasn't easy.
I had noticed that I was feeling nauseous and had been getting a lot of headaches. I was exhausted and was really moody all the time. At this point I was, (as any woman who is trying tends to) symptom spotting like CRAZY. Ladies, you know how it is. You google every single little thing that is happening to you and ask the google gods if it is a sign of pregnancy. I figured that maybe I was so I took a test. Negative. The next day? Negative. I took a test every day for nearly two weeks. I still hadn't gotten a period, and I was feeling what I thought were pregnancy symptoms. I thought maybe I needed a blood test to confirm, which I had at my doctor and unfortunately, I was not pregnant. I was baffled. How could I not be pregnant? I hadn't had a cycle in nearly three months, and had every symptom in the book! I would soon find out why.
At the beginning of September I finally called my doctor and made an appointment to come in. I wasn't so much concerned that we weren't pregnant yet, because I know it can take some time, and most doctors won't even let you get tested for problems until you have been trying for a year. But in my gut I knew something was wrong because how could I get pregnant if I wasn't getting a period? You can't ovulate or know when you're ovulating if you aren't getting regular cycles so I knew deep down that there was something wrong with me, I just didn't know what it could be.
I was scared. Being a mom is all I ever dreamed of or wanted. I knew if I couldn't have a baby my life would feel meaningless. It was all I could do to not go crazy every time a friend mentioned that someone was pregnant. I was SO happy for everyone I knew that was having babies, but as anyone who is trying knows, there is always a piece of you that still hurts inside when yet another person is pregnant. That's why I will never ask someone when they're going to have a baby. SO SO many people said to us over and over, "So when are you going to have kids?" "What are you waiting for?" It is so insensitive and ignorant for people to say that and I never really "got" it until it happened to me. It is no one's business when anyone is starting a family and you don't know what people have been through. Maybe they have suffered a loss, or are going through something difficult, or have been trying for years. Maybe they CAN'T have children, maybe they don't want children. Whatever the reason it doesn't matter. NEVER ask a person that. I don't care who you are or how close you are with someone. Those are questions that are not meant to be asked. If someone confides in your or opens up to you about it that's one thing. But don't ever ASK. I really feel for the people who get asked that again and again because it's not fair and every time you hear it the wound gets reopened. I really hope people will think before they ask such insensitive questions in the future. For the sake of ALL families who may be having a hard time conceiving.
At
my appointment my doctor did blood work and recommended a wonderful
book to use to try and help me understand my body a little more. Taking Charge of Your Fertility
by Toni Weschler was like my bible over the next few months. I think
that every woman should read this book. It is not just for those that
are trying to get pregnant. This book is extremely empowering for women
because it explains what happens to our bodies and why. I started taking
my BBT each morning before even getting out of bed. It became
clockwork. The alarm would go off, I would reach under my pillow and pop
the thermometer in my mouth (you have to do it before getting out of
bed), I would record the temp. in my phone and get up for the day. I
charted my fertility signs based on what my body was doing, NOT when the
little green days were on the calendar. The apps I learned are a
guesstimate that only works for the rare woman. Most women are not
fertile when the green days tell you that you are. I charted all of this
info. at Fertility Friend.
This really helped me to see what was happening but I was also very
discouraged because your chart should look like a slow curve with a
spike and mine looked like the rocky mountains. My temps were all over
the place and so were my fertility signs. It didn't look like I was
ovulating.My doctor had also given me progesterone to make me get my period. I took it twice a day for 5 days and then when I got it I had to schedule my HSG. The HSG is a test where they shoot dye through your fallopian tubes to see if there are any blockages. It doesn't hurt it's just uncomfortable and afterwards I got really bad cramps. I was so scared that there would be scar tissue or a blockage or something but that still wouldn't explain my lack of ovulation. Thankfully my tubes were nice and clear! But that meant we still didn't know what was wrong. That was mid September. By the middle of October my period hadn't come again and my chart was looking more and more like mountains. And we still had no answers. I called my doctor again to go in and talk to him.
I went to see him on October 26 and he told me what the blood work showed. My FSH (follicle stimulating hormone) and LH (lutenizing hormore) levels were low. So androgens (male hormones...gross I know) take over and overproduce. That meant I had what I had been fearing-I had PCOS. Dr. P. told me it didn't mean I couldn't get pregnant, it just meant I might have a tough road ahead. He told me that there were plenty of options, the first one being Clomid. I would take Progesterone again to make me get my period, and once I got it on the 3rd-7th days I would take the Clomid. The Clomid would hopefully stimulate my body to ovulate. See what happens with PCOS is that if your body does release an egg it gets stuck in your ovaries. They gave me an ultrasound which showed that my ovaries were slightly polycystic, meaning I had eggs trapped in there. They get trapped and they mineralize. In severe cases ovarian drilling needs to be done to get rid of them. Scary stuff. Thankfully mine was mild, but I still wasn't ovulating on my own. Hopefully the Clomid would help that. The strange part was that I was not a "typical" person with PCOS. The classic person with PCOS often had excess hair growth (I thought that was the Italian in me?!), is overweight, can have bald spots, has diabetes, excessive acne, and many other symptoms that I wasn't showing. I later learned that PCOS does not manifest in one certain way. Doctors are still baffled by it and are constantly finding out more and more each day. It's not a "one size fits all" syndrome and there isn't one single way to "fix" it.
Dr. P. told me that we would try this at the lowest dosage for a few months and every 3 months the dosage would get raised. He said when I wanted to get more aggressive we could. It made me feel really good knowing he was on my side. Most doctors don't even test you until you have been trying for a year. I am forever grateful that he found out what was wrong right away. If he hadn't followed his instincts and did blood work then Little Miss might not be with us today. He suggested I try to start a low glycemic diet as well, as many people with PCOS find it helps. I left feeling equally devastated and determined.
As soon as I left his office I called my mom and bawled. I had an answer but it was not what I wanted to hear. How could I have a baby with PCOS? I never even heard of it until recently, and I didn't know where to begin. Why couldn't my body do the one thing a woman's body is supposed to do? All I wanted was a baby and I couldn't even do that. I was so upset. My mom reassured me that we had an answer as to what was wrong and now we could try to fix it. That gave me some hope. She was right. But it still hurt so much. There is a little chapel in Williamsville where you can go and write your intentions and say a prayer and light a candle. I happened to pass by it on my way home and stopped in. I wrote my intention in the journal and prayed for a long time. I wanted guidance as to what I should do. I didn't even know how to process the information I had been given. I left feeling a little better, my head clear. I called my sister and she told me she was coming over to keep me company until Andy got home.
My sister brought me guacamole and wheat tortilla chips, and a piece of chocolate cake. She told me it was my "last hurrah" and the wheat chips were her attempt at being a little healthy. That gave me a good laugh. I needed that. We pigged out and talked and I felt a little better. That night Hubs made me feel even better. He held me and let me cry and told me we have a plan now, so let's not get worked up unless it doesn't work.
That night I got busy. I googled and googled and pored over blogs and websites. I read every last thing I could about PCOS and how to manage it. I learned that women with PCOS have a difficult time metabolizing and breaking down carbs and sugars...similar to a diabetic. I learned that cow's milk is not good for us...and that a low glycemic diet will help keep the symptoms of PCOS at bay, and eventually help the body regulate itself.That weekend I started my new lifestyle. it wasn't a diet, it was a whole new way of thinking. I ate low glycemic pasta and Ezekiel bread, and I even cut out sugar, instead substituting Stevia. I ate a healthy smoothie every morning made with steel cut oats and flaxseed. I made "ice cream" from frozen bananas, peanut butter, and cocoa powder. I threw out everything with high fructose corn syrup and switched to almond milk. Sunday was my sister in law's baby shower and it was hard. It was all I could do not to burst into tears at the sight of all the baby stuff. But I kept it together out of respect for her and kept my head held high. And I didn't eat a single dessert. I cut out all beverages that weren't water and I sprinkled cinnamon on everything (it's known to lower blood sugar). I cut out alcohol and lunch meat and yes, even blue cheese. I made everything with wheat flour instead of white. And I started feeling good. Like really good. I had so much energy and my moods improved. I was working out 4 days a week and I lost 7 pounds in two weeks. I was in the best shape of my life and I did it the healthy way. I wasn't hungry, I wasn't moody, and I had a really positive attitude. I felt like a new person. I couldn't believe how changing my diet could so drastically improve how I felt. My hormone levels were regulating. It was amazing how I could tell that I was getting "better." Not fixed, just managing my PCOS, and it felt great.
I had also started my Clomid and although I was hoping for the best, I wasn't getting my hopes too high. In fact, that month I honestly just was more determined to get myself healthy than anything else, and I wrote off getting pregnant. I really just was focusing on getting my PCOS handled, and figured it wasn't going to happen the first month anyway, so I wasn't even thinking about it.
The following weekend my mom, brothers, and I were helping my brother move to New York City. It was November 6th, and according to the signs in my book I was fertile. But I was also going out of town and Andy was staying home. Of course, I figured! But I was not hopeful for that month anyway so I put it out of my mind and put it in God's hands. It was important for me to have that time with my family and I am so glad I did. We had so much fun, and it was the first time in a long while that my mom and brothers and I were all together. I cheated on my trip because how could I say no to Sheetz pizza, and homemade cannolis and yes, more pizza in NYC?! It was amazing how GROSS I felt though! My mom even talked me into eating a mayo roll once we got home. Bad influence! :) I had an amazing time, but once I got home I was glad to get back to healthy eating again.
That week was busy as Hubs and I were getting ready for conferences and report cards and I didn't really think much about things. Of course we were still trying, but we were also trying to keep busy and not get our hopes up. How could it work the first time, especially since I had supposedly ovulated while I was in NYC?
On November 18th I had parent teacher conferences and ALL day I was looking forward to Girl's Night Out for Breaking Dawn and my cheat day! We were going to Melting Pot for cheese and dessert fondue and I couldn't wait to see the movie and my friends and just hang out. SPOILER ALERT - Bella is pregnant in Breaking Dawn! I knew this of course because I read the books, but seeing it on the big screen of course amplified it for me and I got a little misty. I joked to my sister and BFF Kelly, "Wouldn't it be funny if I was pregnant like Bella?" After the movie at Melting Pot I had my first glass of wine in months. I figured life was short and I needed one after all we had been through. I hadn't had anything to drink since my cousin's wedding in June. (Consequently the next day was when we decided that we were going to actively try for a baby. We were emotional and inspired because my cousins Jeff and Lorri announced their pregnancy at the wedding. My whole big Italian family ran to the dance floor and sobbed like babies. It was a lovely hot mess!) So as I was enjoying my cheat day I had this feeling come over me. I felt a little bit sick, like I had a cold, and just had this feeling. I don't even know how to describe it just something niggling in the back of my mind and I couldn't put my finger on it. I went home that night feeling a little icky like I was coming down with a cold or flu and still had that "feeling."
The next day I slept in because I still felt a little sick and we were going to Syracuse to watch my brother play in the football finals. I took my temperature and it was high. I figured because I had a touch of something. Then something made me look back at my chart. I noticed that I had a spiked temp a few days before and that my temp was still high. No, I thought, there is no way. But I just had that feeling. I wondered if the feeling was all in my head and I was setting myself up for disappointment. I didn't even find Hubs, I went in the bathroom and got out my little my dollar tree test (I found that it was a lot easier to use the dollar tree tests because I was testing SO much). As I was waiting for it to inevitably not show another line Andy came in to find me testing yet again. This had been a common scene in recent months. He said it's too early, why are you doing this, you are just going to get yourself upset again. I said, I know, I know, I just figured I would try. It was only showing one line anyways.
He hugged me then and I got a little teary eyed when over his should I saw it. It was VERY faint, but it was there. A very, very faint second line on my pee test. Now I had taken LOTS of pregnancy tests and I knew that the ones with blue dye almost always have a slight evaporation line. And EPT tests do sometimes as well. But dollar tree tests NEVER have an evaporation line. EVER. I said, hold on...I pulled out the big guns for this. I had bought a box of clear blue digital tests on sale for the day when I would need confirmation. I dipped the digital test in the cup (always pee in a cup and then dip the test in...less foolproof, and then if you need to take 15 tests to check you don't have to wait. I am an expert, trust me!) and we waited for what seemed like 10 years. It blinked and blinked and blinked until low and behold...
I
was seriously in shock. How on earth could it be?! Once it hit me I
started to cry and was jumping up and down, pee sticks flailing about. I
grabbed Hubs and hugged him so hard. We were both so surprised and
shocked and he did not believe it. He was so sure it was a mistake and
even I was a little miffed. How could it have happened so fast? The
first try on Clomid. We really could not believe what we saw especially
because it was SO soon after I had ovulated, or supposedly ovulated.
We
thought originally that I had ovulated on the 6th, but according to my
chart that month it most likely happened on the 11th. We found out on
the 19th. So we found out 8 days past ovulation. That's almost unheard
of, it's so early. That's why charting is so helpful and important if
you are seriously trying. I was so scared of a chemical pregnancy
because it was so early, but once you have 18 days of higher
temperatures it means it is a viable pregnancy. I tested every single
morning until I was able to confirm with a blood test that checked that
my progesterone was high enough, and that my HCG levels were doubling.
Of course, that week was Thanksgiving, so Monday I immediately called to
get blood taken because I wanted to check my levels and I went in
Monday and Wednesday. Women with PCOS often have a hard time producing
enough progesterone to support a pregnancy so I was very nervous. And
just my luck, I had to wait until after the holiday to get my results.
But since I was testing every day with dollar store tests, it held me
over. A note: Dollar tree tests are awesome because the more HCG you
have in your system, the darker the lines are. So I was able to check
that my levels were doubling because every day the tests got darker.
Crazy? Yes, but it gave me peace of mind! And sure enough, Monday after
Thanksgiving I learned that both my HCG and progesterone levels were
good, and I was to see my doctor for an ultrasound in December.
And with that, we had our peanut :)
I
still, to this day, cannot believe how fast it happened once I got my
diagnosis. And I will never truly know if it was my lifestyle change,
the Clomid, the HSG, the weight loss, or a combination of all of it that
brought us our baby girl. But I DO know that it made me the happiest,
most humble, and most grateful person on the planet. Because through
this experience I learned that God works in mysterious ways and if you
just trust in Him and believe anything is possible, it can happen. Even
with PCOS.
My
hope is that one day PCOS will be something of the past. But until
then, if you or someone you love is afflicted, know that it is not the
end. It's just a different path. And there's a reason you were sent down
that path. I want my story to be one that give others hope, and
instills a belief that anything is possible through prayer and trust in
God, and through serious hard work and dedication. The Lord works in
mysterious ways and He doesn't give us anything that we can't handle. I
hope that those who get to the dark place where I was a year ago can
read this and know it is not the end, it is only the beginning of a
different way of looking at the world. Have faith, and know all things
are possible through love, and prayer.
Love and Laughs,
Danielle
PCOS Resources:
http://pcosdiva.com/ Awesome website!!! SO much info and she does weekly meal plans and recipes!
http://www.incyst.com/ Great support group and blog-recipes, tips, etc.!
http://fitbottomedgirls.com/ Not a PCOS site, but good recipes!
http://www.3fatchicks.com/
http://pcoschick.blogspot.com/ Blog by a woman with PCOS
You can also find healthy PCOS friendly recipes and info. by following me on Pinterest:
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