Awareness Month Cysters' Stories

For PCOS Awareness month, I wanted to share other cysters’ stories with you.  These particular cysters are the admins on our closed Facebook group (you can access this group by clicking the teal bar at the top of the page).  They are all from different walks of life, but will always have one bond: fighting against PCOS!

PCOS symptoms affect each of us differently; however, it seems to affect our hearts and how we feel about ourselves the same.  I believe in reading parts of their stories, you will hear some of your own words, like:

“The only thing I ever dreamed of being, aside from a super hero was a mother.” - Heather

“I have always wanted to be a mom.” – Jenny

 Each of these beautiful cysters are strong fighters and I admire each of them for their strength, their determination, their hope and the fire that keeps each of them educating themselves on PCOS and sharing the knowledge they gain with others.

They each agreed to write their stories for me to share in order to show anyone reading that you are not alone.  We are all in this together. We each struggle and fight daily and we each have a story. I hope their stories help you find the strength to share your story with your friends and family to help spread awareness.  The more we share and tell; the more attention we can bring to this Endocrine Disorder and push for more research.

What made you think something was wrong?

Heather – “I had stopped taking my birth control in March since we had already decided to try (starting a family after marriage) right away, but after several months it was clear something wasn’t quite right. Over the next year, I stopped having periods, started losing a ton of hair from my head, getting even more (hair) everywhere else. I had gained back the weight I had lost plus some. All this without changing anything other than stopping the birth control.”

Ashley – “I had textbook cycles until I went on birth control at 15/16. At 18 I had recently gotten married and we had wanted to start a family so I came off birth control. I never had a period that next year not even a sign of one. I knew something was up because of my prior cycle beforehand. I also began to gain weight, more than I already did while on birth control.”

Jessica R – “From the age 14 to 18 I was on the Depo shot so I never knew anything was wrong. The only symptoms I ever experienced was unexplained weight gain, acne, and horrible mood swings which was chalked up to puberty and depression. Once I got off of the Depo shot I never had a period. I went to my GYN to see what was wrong. It had been a year after coming off the shot and I had been having regular unprotected sex with no period and no pregnancy.”

Jenny – “I have struggled to have a regular period since my teenage years. I was placed on birth control in high school to help regulate my cycle. I became overweight at puberty. It was manageable because I was active. I was a member of our color guard team with our marching band which kept me running. In college, I was still active. We walked everywhere. I took the stairs and stayed active on a daily basis. After college, my weight skyrocketed. I took a job in an office and lost all my activity. I almost doubled in size. I began to suffer other symptoms as well. My periods became even more erratic. The hair on my head began to fall out by the handfuls (thankfully, so far we have not been able to see a difference visually because of the thickness of my hair). I cut my hair short to try to prevent the loss. It slowed but it still falls out! I had other hair begin to grow in places it shouldn’t. I hit a “second puberty” with increased acne. I developed a constant state of pain. If I didn’t hurt in my ovaries then I hurt in my lower back. The cramps were constant. I learned to cope. My moods have become more erratic as well. I can be on an extreme high and then hit an extreme low in a matter of minutes. My anxiety has become so intense that my marriage has suffered slightly and my social life has suffered greatly.”

Most women with PCOS are aware something is wrong during their early teen years, but never speak about it. They always think, ‘it’s what makes them who they are.”  We cannot continue to sit back in silence, suffering.  We need to spread awareness, so that the next little girl hitting puberty, who doesn’t feel quite the same as her girlfriends going through the same, never sits in shame wondering why she is different!

What happened when you were first diagnosed?

Jessica S – “I’ve been through a lot of Doctors. Even though I had multiple outward symptoms, I was pushed out the door feeling insufficient.”

Heather – “The first doctor put us through the wringer! She insisted on several blood tests and even ultrasounds, she just knew my symptoms were due to pregnancy and that the urine test strips were just inaccurate due to my out of whack hormones. Months and many sleepless, tear-filled days and nights later, we decided enough was enough! It was time for a second opinion! The first appointment with my new doctor, and before I could even finish explaining my symptoms she thought she knew my root problem. It was then we learned I have PCOS.”

Jenny – “After a year of trying, we decided to speak to my doctor in September 2012. After testing and ultrasounds I received the diagnosis of PCOS (Polycystic Ovarian Syndrome). I was told it is a bunch of cysts on my ovaries that were preventing me from getting pregnant. I was told my cysts were very tiny. She doctor showed me my ultrasounds (which made absolutely no sense to me at the time) and said basically if I drew a circle on a piece of paper and took the finest tip pen I could find and drew tiny dots all over the inside of the circle, that’s what my ovary looked like full of cysts. I was prescribed Metformin, asked if I wanted birth control (which I refused), and was sent on my way.”

Jessica – “My GYN told me not to worry, that I was too young to have kids and gave me a script for birth control and told me that it would make me have my period and to stay on it. She never did any testing, blood work, or ultrasounds. I wanted to have kids so I didn't want to be on the birth control. I knew in my gut that there was something more to what was going on with me. I decided to get a second opinion. I told the new GYN everything I had been experiencing and how the other doctor had treated me. She said that she suspected PCOS but wanted to do some labs and an ultrasound. Once everything came back it was confirmed that I had PCOS. She didn't really explain it to me very well. She said that she wanted me to try metformin before fertility drugs because she has had success with patients getting pregnant on it. She didn't explain what it was really for and only told me that PCOS would cause me to have a very hard time getting pregnant. I was not told about the acne, hair loss, hair growth, insulin resistance, weight gain etc. that also comes along with it.”

Ashley – “It actually took me another 6 months to get a referral to an OB/GYN (husband was military and required referrals for everything). My general doctor told me I was way too young to get pregnant and nothing was wrong. She took blood and everything came back normal, or so she said. When I finally went to the OB/GYN she diagnosed me after doing more blood and ultrasound.”

Did those quotes make you as mad and sad as they did me? Almost everyone’s story I hear or read always seems to have the words, “metformin and sent on my way,” or ones very similar.  This is why we need to fight ladies!  We need to stand up together and demand our voices be heard. Demand for there to be more funding for research in order to get these doctors educated.  I know ladies who have had their PCOS diagnosis for years, yet have no idea they are fighting an Endocrine Disorder and not just fighting their ovaries. We need to be our own advocates, educate ourselves and refuse to go to doctors who are not also fighting for us.

What was next step for you after your diagnosis?

Jenny – “I told my husband of the diagnosis and we moved on with our life. I continued to live as I had before. We continued to try to conceive. We had no idea what PCOS really is. I had a scare which landed me back at the doctor. The doctors went back and forth on the PCOS diagnosis. Again, more ultrasounds and blood work confirmed the original diagnosis. I was given a pamphlet and sent on my way. Jon and I knew nothing about PCOS. I had never been diagnosed with any illness. During this entire process, the things that “made Jenny, Jenny” began to worsen. There were certain oddities about me that people would say “that’s just Jenny.” We have since learned that much of what I have experienced and had since my teenage years are PCOS “symptoms” or “side effects.” We have fought the battle hand in hand. Jon is a trooper. He has been by my side through everything. I have an amazing support system at my side.”

Jessica R – “About a month later I found out I was pregnant. I went on to have a healthy happy baby girl. Still ignorant to what pcos was and the things it caused I went back on birth control. Here I sit 8 years later. 80 pounds heavier than I was before pregnancy, Insulin Resistant, Moody, with lots of hair loss and hair growth. I have never been pregnant again and I honestly don't see it ever happening again without fertility intervention.”

Ashley – “She said she could get me pregnant and prescribed clomid, at 100mg. I did that for 3 cycles and then my husband deployed. I didn’t ovulate on any of those cycles….shortly after my husband divorced me and I kind of hit a wall of depression and didn’t care for a long time (3 years or so). My ob/gyn made it seem like no big deal so I really didn’t worry that much about it or my health.”

Jessica S – I’ve got 3 children. I’m thankful for the opportunity to be able to conceive. Yes, I delivered right at 37 weeks with my first. Yes, I got poked and pricked during a 3 hour study because I was developing gestational diabetes with my last, but he is here and healthy. I’m here. It’s hard and it’s a struggle along with my hypo thyroid.”

Heather – “At first we were just happy to have an answer! PCOS explained so much. More bloodwork was done as well as an ultrasound. My body was a mess! Progesterone was very low, I just wasn’t producing it like I should. My ovaries were both covered in cysts and one was enlarged, though my uterus looked healthy. We were told it would be difficult to become pregnant but not impossible. First thing to work on was regulating cycles and losing weight, no small feat with pcos! My Doctor first suggested going back on birth control to get my symptoms under control, as well as metformin to help with insulin resistance. I declined the birth control at first, just seemed counterproductive, I did take the metformin however. At the time, I thought I knew what I had to do. I listened to the doctor, took my meds and ate well, started working out, losing some weight. It was great! I still wasn’t having a period and felt exhausted and nauseous all the time though. It was then we decided maybe birth control would be a good idea for a bit. “Get things regulated”, like the doctor said. I could lose the weight, then quit taking it so we could try again! After several attempts and it only regulating my cycle, but leaving me an emotional mess, we stopped the birth control again, that’s when the “fun” started… Everything started to get increasingly worse! I couldn’t lose any weight, the hair on my head was falling out constantly, while the hair everywhere else just seemed to grow thicker, depression took over, anxiety started to be an everyday battle, the pain when a cyst was flaring up or when I did get a period was unbelievable! My body seemed to be falling apart. Then in July of 2013, in the midst of it all, the extraordinary happened! I had been feeling even more off for a week or so, took a chance and took a home pregnancy test, low and behold two beautiful lines! We were shocked, excited, terrified, everything all rolled into one! We couldn’t get in to the doctor right away, she said it was fine, to come in the following week to check everything out. I started cramping 2 days later (doctor said it was normal and at the time I trusted what she told me), by the time we could get in, levels were dropping and we had lost it.”

Ladies, it's normal and we all do it; we put so much faith in these men and women who walk around in white lab coats with their clip boards and pens, but we need to educate ourselves also. Yes, doctors are amazing and we need their guidance; however they are not living in your body. You must learn to trust yourself and trust what your body is trying to tell you.  We live in a world with knowledge at our finger tips; use it!  Talk to others, seek support, read blogs like this one then take all that advice offered and do your own research, become the advocate I know is in each of you.

Now vs. Then: where are you now? What have you learned?

Jessica R - “About a year ago I met a wonderful lady on Facebook that taught me a lot about PCOS and how to fight it. She taught me how to research, about vitamins, and how to eat correctly. I'm still struggling to get back on track at this point. However now I have the tools and the knowledge to fight this. I have come off the birth control, started on a few supplements, changed my diet, and am in the process of trying to get my cycle back on track. I have fired 2 of my docs and started with an endocrinologist and am working on getting a new GYN so that I can do the best for my body. It is truly an everyday struggle for me. I have moments of great strength feeling that I can fight my PCOS and in turn I have moments or great weakness feeling like I am never going to get back on track. All I can do is take it one day at a time and if I fall off the wagon to get back up the next day or the next meal and start fresh again. I am determined to do this not only for myself and my health but for my daughter as well.”

Jenny – “Jon and I started to research PCOS on our own. We wanted answers. 2014 was the hardest year of my life! The symptoms became unbearable and we needed answers. We needed help. Jon tried to encourage me and help me but I needed other help too. I found the group PCOS – Polycystic Ovary Syndrome on Facebook and www.pcoshelp.org. Tina took me under her wing! I completed the monthly program and recommendations given by pcoshelp.org. My life changed for the better!! I learned a lot about PCOS on my own and was given amazing guidance with this group! Any question I have, if I cannot find an answer (or am too lazy to do it on my own), is answered quickly and appropriately. My life has turned around in 2015. I still struggle on a daily basis. I am not “cured” because there is no cure, but I am managing. I am surviving. I am a survivor. I am PCOS strong!”

Heather – “I searched Facebook for support groups for women with PCOS and luckily found Tina Maries group first!  I spent so much time online it was ridiculous! There was so much more to PCOS than I ever knew! I was even luckier when Tina started a PCOS Healthy Lifestyles group in February and I was able to sign up for it. My eyes were opened and I received so much information, love and guidance from Tina! She truly changed my outlook on PCOS and life! While there is no easy way to deal with everything that comes with PCOS, I can fight back and make a difference! I started my personalized supplement regiment in February and have added a couple more since then. The supplements alone, help tremendously. Still having trouble trying to regulate my cycle, but overall, feeling much better! There may not be a cure for PCOS but with knowledge and understanding, it can be managed! My husband and I have come to terms that we may not have the large family we always wanted, but we are still going to fight with all we have to have a baby of our own! At the moment I am back to square one with needing to regulate my cycle and lose weight, however this time around I have the knowledge and support to do it right! Every minute of every day, I am thankful I have the most understanding and wonderfully loving and patient partner to get through this with, as well as an amazing group of ladies I met in the support group who understand what I’m going through and are always there with love, support and advice. My husband and I know we will always have each other, regardless of the outcome, but maybe someday with natural supplements, proper diet, exercise and positivity, we can complete our family!”

Jessica S – “I took charge, I said, “I will do something about it,” and I’ve done exactly that! I’ve researched and had help from some of my fellow cysters. Ladies, Knowledge is key and we are our best advocates for our own health. Spread Awareness.”

Ashley – “Wow, looking back I can’t believe how naïve I was or the fact my doctors acted like nothing was wrong. After researching on my own, and meeting wonderful ladies for the PCOS- Polycystic Ovarian Syndrome group I have learned what a big deal it is and that it is very important to take care of myself. I learned that diet and exercise are important and what I can and cannot eat. I used to eat everything in sight and not care but now I know I cannot do that…From my first diagnosis to now, I am what they consider a think PCOSer, my original weight was 95lbs, but I did gaine 35lbs but have since lost weight and now am at a happy 110lbs again,I don’t have a lot of the symptoms others do andInow have regular periods, most of the time, thanks to me being my own advocate and demanding treatment…...I have learned that I am not “normal” and never will be.  Today I am more focused on learning more, taking care of myself, eating right, taking the correct supplements. And medications. I still haven’t gotten pregnant. But that doesn’t mean I will give up the fight. I will continue to work on myself. Continue to make healthy choices.”

Heather, Jessica R, Jessica S, Ashley and Jenny, thank you! Thank you for trusting me with your stories. Thank you for being willing to share your stories to educate and encourage other cysters. Thank you for allowing me to be a part of your stories. I am humbled that my name is mentioned in any of your stories. 

As I have said over and over again; we need to be in this together. We need to stop feeling ashamed of our symptoms. We need to realize that our syndrome is so much more than a fertility struggle.  We need to make our voices heard, we need to find a way to join together and make the doctors and our government hear us so they provide the funding required for more PCOS research.  Stand proud ladies!  There is NOTHING, absolutely NOTHING wrong with you!  You each have my support and love and I hope you continue give the same support and love to each other.