September is PCOS Awareness Month

September is PCOS Awareness Month.  PCOS is polycystic ovarian syndrome.  It affects 1 in 10 women, and it is a life-changing diagnosis.  Although many women become diagnosed with PCOS while attempting to conceive, it is much more than a fertility issue.  (See Our Infertility Story here.)  It can lead to heart disease, diabetes, high blood pressure, obesity, and many other health issues.

I reached out to some of my friends who, like me, struggle with PCOS.  I asked them to share their PCOS stories with me for my blog in order to help bring awareness to our shared problem.  The two stories I am sharing today are by two of my good friends from high school.  I was close to both of these girls, never knowing that we all three shared the same struggles.

 

The first one is by my friend Heather Eoff.  Heather wrote:

I went through puberty beginning at age 9. I was diagnosed at age 15. I had been having irregular periods for several years. When I was 15, I began having chronic pelvic pain and my periods (when I had one) were horrible. I went to the ER one night because I had been bleeding heavily for 9 days. After being put on birth control and some meds for the discomfort I was told to follow up with my doctor. I followed up and was sent for an ultrasound. The ultrasound revealed that I had oversized ovaries and follicles common in PCOS. I asked about the diagnosis and was not given much information. Basically I was told it would be difficult to become pregnant if it happened at all and that I would need to remain on birth control. As the years went on, I developed more issues. By age 19 my hair was falling out in handfuls, I was overweight, and I felt horrible all of the time. After several doctor visits I was told that I was borderline diabetic and put on metformin. It was not until I was referred to an OB/GYN that I was given proper education on this disorder. At age 23 after being off birth control for 2 years, I became pregnant with Logan. We had intended to start fertility that summer. My doctor had recommended to start having children soon because the older I got the harder it would be to conceive. A few months after the surprise positive pregnancy test, my OB/GYN told me that increasing my metformin dose could have caused me to ovulate the month that I conceived. My pregnancy with Logan was scary at times. I had hyperemesis and lost a lot of weight. We thought he’d be too little. I went through the stress tests and extra lab work. After my church family prayed over me one Sunday evening, I was never sick another day. I gave birth to a perfect baby boy. After my pregnancy I felt great. I was taken off of the metformin during my pregnancy and did not go back on it until I was done breast feeding. I felt like my hormones were finally in sync with my body. My hair no longer fell out. My weight stayed stable. I began having some blood sugar fluctuations and the doctor decided to increase my metformin in October 2009. I was on birth control at that time to help keep my periods regular. January 2010 I found out I was 9 weeks pregnant. Metformin again was thought to have caused me to ovulate. After the birth of my son Connor, my hormones went out of whack again. It was the complete opposite of how I felt after my first pregnancy. I was losing my hair so much that I had a HUGE bald spot on the top of my head, facial hair was growing in darker, pelvic pain was constant, blood pressure was elevated, and my blood sugar was out of whack. So more doctor visits, more tests, and I was put on spironolactone along with the metformin. I had a tubal ligation with my c-section due to complications, but I was still on birth control to help with my symptoms. Five years later, I’m still battling the same issues. I’m no longer on the birth control, but I continue to take spironolactone 200mg daily and metformin 1000mg twice daily. My hair has grown back in some, but not near what I wish it was. My weight is up and down. My blood sugar and blood pressure are up and down. A low carb diet, walking, and a supplement called Greens are helping me, but I still wish there was a way to cure this issue. The lack of education that people are given about PCOS is something that I work towards changing. I wish I would have been educated properly as a teenager. I am thankful that as the years have gone on, doctors have become more educated about the issues women with PCOS face. I hope my story might help someone else. As PCOS cysters we need to support one another. PCOS is different in everyone. We all face different struggles because of it. Through support, education, and lifestyle changes I hope we all can have a healthier life.

The next story is by my friend Sarah Beth Cole.  Sarah Beth wrote:

 I was diagnosed with PCOS at 19 but I believe I was showing symptoms before. Between 10th grade and senior year I gained 40 pounds while still eating the same as I always had and keeping the same sorts of activities. I began finding small black hairs on my face and struggling with acne when I had never really had issues with it before. My periods were almost unbearable the first few days.. Sometimes I would stay home the first day because the pain was too extreme. They were also very unpredictable and at times would show up twice a month and last for over a week. When I was 19 the doctor that diagnosed me put me on Yasmin a birth control to regulate symptoms. The Yasmin made my periods much more manageable and much lighter and shorter and even cleared up my acne. Unfortunately the facial hair was not going anywhere and I began the embarrassing process of finding ways to get rid of it. Which we all know makes it come back thicker and blacker. My weight always fluctuated no matter what type of diet I was on and that and the facial hair was always a sensitive subject for me. I would get so nervous when dating wondering when they would notice the facial hair and would they still find me attractive with it.. At 22 I found out I was pregnant even though I was still on the birth control.. At about 5 weeks I told my parents and we began to prepare for baby. A week later I miscarried. I was devastated as it was my first pregnancy and I had just begun to get used to the idea and be happy. In laid in bed for almost a week crying and in pain from the miscarriage. I was put back on the Yasmin, only to get pregnant again a few weeks later. Neither pregnancy was on purpose but I never once believed my child was an accident . I carried Josie to 37 weeks. I got preeclampsia and was put on bed rest two months before my due date. Doctors said that they believed the PCOS made me more susceptible to getting preeclampsia. I had my beautiful baby girl 3 weeks early and both her and myself were just fine. 6 years later my symptoms of PCOS have progressively gotten worse. At one point I was able to lose 50 pounds and was smaller and healthier than ever but the weight came back on just as quickly. At this point I've been on several different birth controls, tried every diet plan out there...and can't seem to get any weight off. I was extremely blessed to have a baby with no major issues and without having to go to specialist and I will forever be grateful for that as I have heard many stories of other PCOS women who can't get pregnant or had a hard time. The worst thing for me is the embarrassment of the side effects. At 30 years old my face was covered in acne, and the facial hair has worsened from years of removal. To this day even though I've been with my boyfriend for two years and he knows everything about me, I make sure he never sees me go Through the hair removal Process and I am always careful he never sees or feels it. I've spent many hours crying and feeling ugly from the weight, acne and facial hair issues. In the past several years the cysts on my ovaries have gotten worse. The chances of having another child are very slim. I don't plan on attempting to have another just thanking God for the one he blessed me with. I feel tired, so tired, almost every day and have no energy to do the exercising I need to and it's a struggle to diet properly and force myself everyday . I want to be healthy and I do not want to get diabetes! But man I really love cokes and sweets! My most recent doctor put me on a new birth control, and doxycycline for the acne. I do feel much better finally having a clear face after all these years, but my energy levels are still low and my weight is still an issue, and the facial hair is still there. There are so many doctors and people out there that don't even know about PCOS and that is so frustrating for me! I got so tired of hearing "you have what?" "Oh this birth control might help" "well you were able to have a kid so I don't think you have it."  All cases are different as every woman's body is different! My next step is to try the metformin and pray it helps with weight and energy levels. And to continue to push myself to eat better and work out. I need to stay healthy and be around a long time for my precious girl and gift from God!

I want to thank both ladies for having the courage to speak out about PCOS.  It's not always comfortable writing about something so personal, but I feel like it is important.  After I wrote Our Infertility Story back in April, I received messages from many ladies that I already knew, telling me about their struggle with PCOS and infertility.  It's important that we let others know that they are not alone.  If you would like to share your PCOS story, please email me at sarabrownlee@hotmail.com.

Sara Grace