Soul Cysters

I want to start off by saying thank you for being here! PCOS (polycystic ovarian syndrome) sounds like such a scary thing, but it doesn’t have to be. If you’re reading this, whether you have been diagnosed with PCOS, friend, a loved one, or you're just simply curious about what it is, you’ve come to the right place!

Let me give a little introduction before we really dive into things. My name is Andrea, I’m 38 years old, married 14 years to my high school sweetheart, and am the proud mother of three fur babies. I was diagnosed with PCOS when I was 21 and it has been a roller coaster ride ever since! I was always an active and fit teen who played sports in school and was always on the go with my friends, but once I turned 19, the weight started piling on. I honestly had no clue what was causing it and nothing I did seemed to help get rid of it. My periods became very irregular. Some months I wouldn’t have one and other months were extremely heavy. When I was 19, I went through a time where I bled heavily for six weeks straight. My doctor had no idea what was going on. PCOS was something I had never heard of, and it wasn’t even mentioned by my doctor. Her “solution” to the problem was to put me on progesterone and “see if that fixed it.” I was clueless and thought my doctor of all people would know what to do, so I went along with it. Yes, it initially took care of the constant bleeding. Over the next few years, I dealt with more weight gain, heavy irregular periods, and felt like I had no energy to even get out of bed, and most importantly, felt alone. None of my friends or family understood what I was going through, and they didn’t understand why I had suddenly changed so much. I didn’t even understand it myself, so how was I suppose to explain it to anyone.

Fast forward to when I was 21. My periods were out of control and I was tired of feeling miserable all the time. I found a gynecologist who came highly recommended and I made my appointment. After telling her about my symptoms and what I had been going through, she finally had an answer: PCOS. I had no idea what she was talking about. She went on to explain (a little) to me that “PCOS is a hormonal imbalance that causes cysts on your ovaries, irregular periods, weight gain, and makes it very difficult to become pregnant.” That was how she explained it. What I didn’t know at the time was that PCOS was still pretty much a mystery to the medical profession. It wasn’t as common as it is now. I just know I had never heard of it so to me, it was terrifying! She put me on birth control and told me it would “regulate my periods and help with my symptoms.” Again, I had no clue about any of it, so I went along with it. The birth control seemed to help with my periods, but not so much with the rest of it. My weight continued to climb, my energy levels stayed the same which was pretty much non existent, and my mood could go from happy to wanting to rip your head off in about .2 seconds. I was miserable, but it still didn’t occur to me to do my own research. I thought my doctor knew what was best for me and this was just my life. I remained on the birth control for almost a year. I couldn’t do it anymore. I just knew there had to be a better way, but I didn’t know what that was.

Fast forward again to when I was 24. My high school sweetheart and I decided to get married (again, but that’s a story for another time). We found out I was pregnant the summer before we got married. We were so excited! We both knew that we wanted to have a family and live happily ever after and it was finally happening! Eleven weeks into the pregnancy I started spotting. I called the hospital in a panic and they told me it was perfectly normal, stay lying down the rest of the day with my feet up, but if the bleeding got worse to come in. I went to bed that night feeling relieved, the bleeding had stopped. About 3:30 in the morning, I woke up feeling like I had just started to wet the bed. I ran to the bathroom and found I was bleeding heavily. After a long, heartbreaking trip to the ER, I returned home and mourned the loss of our baby. I can’t even explain to you all of the different feelings I had coursing through my body. I was devastated. Over the next few years, my husband and I tried and tried to start our family again. Nothing was happening. My periods were a little more regular at this point. I wouldn’t have one every single month, but most months she would make an appearance. We decided to see a fertility specialist. After many rounds of shots, medication, tests, ultrasounds, and weekly four hour round trips to see the doctor, and three months later, I was pregnant again. Excited, but scared, I made my appointment to have my blood drawn to check my HCG levels. Sure enough, I was pregnant! The excitement once again was very short lived as I lost another baby at eight weeks. Heartbroken.

I suffered a third miscarriage in 2013, and that one did it. I was broken. The ER doctor offered me a little piece of information that I definitely want to make sure I mention for anyone who is trying to conceive, and for anyone who might be suffering from multiple miscarriages. The doctor discovered that my blood type had the RH negative factor. For anyone who doesn’t know what that means, let me explain. Blood types are generally either positive (A,+ B+, Etc) or negative (A-, B-), I’m AB-. If a woman with a negative blood type becomes pregnant with a positive blood type baby, her body could potentially see the baby as an invader and fight it off. If the woman miscarries, as I did, her blood and the babies blood would then mix, causing problems for future pregnancies. There is a shot called the RhoGam shot, which would protect future pregnancies from harm. I had never received this shot. It wasn’t until I was 33 years old, having my 3rd miscarriage, that it was finally discovered! So ladies, know your blood type as well as your partners! Talk to your doctor about it and know your body!

Since 2013, I have discovered that PCOS is becoming more and more common. I live in a very small community and I now know of at least 4 women here, not including myself, have been diagnosed with it! I am proud to say that since being diagnosed at the age of 21, I have taken it upon myself to do my research, understand more about what’s going on with my body, and if a doctor’s “cure” for my symptoms doesn’t feel right for me, I don’t do it! Now, I am not bashing on doctors or trying to say that they don’t know anything. Doctors are extremely important and highly-educated to diagnose and treat illnesses. I am simply saying that there are no two cases of PCOS that are identical. I now know women with PCOS who are almost 300 pounds, can’t get pregnant, and don’t have periods and women who have PCOS, don’t have a weight problem, no problem getting pregnant, and were only diagnosed because they have cysts on their ovaries. Doctors are trained to treat something as a whole, meaning, “you have PCOS and we typically use medications such as Metformin and birth control to treat it.” Metformin is a medication given to diabetics to control their insulin. A lot of women with PCOS do have insulin resistance and Metformin can help with that, but not all of them. Birth control helps with regulating the periods of women with PCOS, but not all women with PCOS suffer from irregular periods. Are you getting my point? Why would you take a medication for something that may not be an issue for you?

My goal in writing this story is to open up your mind and get you to really take a look at what you’re body is experiencing and then do your research! Know your body, ask questions, do your research, and then ultimately do what feels right for you! I am not a doctor. I’m not here to give you medical advice. I am just a woman suffering from PCOS and all of its many symptoms. After years of struggling, I’ve done my research, found what works for me, and I’m here to help you do the same. You are not alone. We are all women, warriors, soul cysters, and together we will get through this! Thank you for reading and I’ll see you on my next story where I’ll talk about what I’ve tried, what has worked for me, and what hasn’t. See you then!