Why Am I Writing This?
This is my PCOS Story. It was because of other women on the internet sharing their story and symptoms, that I was able to self-diagnose my PCOS and take back my health. This is my way of saying “thank you,” to those women, and to spread awareness to help someone else searching the internet for answers. Grab a cup of spearmint tea and get comfy. This is a long story.
My First Symptoms
I would say my first obvious symptoms of PCOS began when I was 18 when I started to get very painful cystic acne. This began around the end of my senior year of high school. I had very large painful pimples mostly on my chin that would take months to heal.
The second symptom was weight gain. I have had a problem with weight my entire life, and was always the “big girl.” Weight gain seemed normal because I had never known anything different. Every year I would put on more and more weight, despite being active. I was perplexed at a young age that my peers could eat the same things I did, but not gain weight. I remember doing Richard Simmons Sweatin’ to the Oldies at the age of 8, trying to lose weight. It seemed like each grade I would go up one jean size and went from a size 14 in 7th grade to a size 24 when I graduated.
I honestly don’t remember what my periods were like at the time. I knew absolutely nothing about a woman’s cycle and didn’t pay any attention. I did have bad cramps, which I thought was normal because my mom said she had the same thing. She never had any fertility problems, so I didn’t suspect a thing.
Seeing a Doctor
When I turned 18 I went to my first gynecology appointment. It was a terrible experience. He did nothing except berate me about my weight, and I left the appointment embarrassed and ashamed.
During my freshman year of college, my PCOS symptoms started getting worse. My periods became heavier, more painful, and I was constantly spotting in between cycles. My acne also continued to worsen. At 19 when I saw my gynecologist and explained my symptoms he said it was because I was overweight.
And then I Almost Died
Not soon after I had the worst period of my life. I happened to be at home on spring break, and I was passing golf ball size blood clots. My period was so heavy I had to wear big bulky pads meant for urine and was changing them multiple times an hour. I remember feeling like I was going to pass out whenever I stood up. I was so weak, I couldn’t even walk across the room. Luckily I was at my parent’s house and they forced me to go to the emergency room. By then my skin was as white as a ghost, and I found out I was literally bleeding to death. I had to have an immediate blood transfusion. The doctor said if I would have waited any longer, I would have died from blood loss.
At the ER I was given birth control to stop the bleeding. I had to take a week’s worth of pills all at once. They also performed a transvaginal ultrasound to check for fibroids, but nothing was found. At the follow-up appointment with my gynecologist, he offered no explanation why this had happened other than my weight. He kept me on birth control and sent me on my way.
On birth control my periods were less heavy and more regular, although I continued to have random spotting throughout my cycles. Also, my acne continued to be horrible, which was frustrating.
I stayed on birth control for about 5 years. I eventually stopped taking it after getting married and moving to a different state. At that point in time, I needed to start seeing a new doctor but was afraid because my experience with doctor’s had only been fat-shaming.
After stopping birth control I didn’t have my period for a year. At the time I didn’t think much of it. I figured it was a symptom of being on birth control for so long and eventually my periods would come back. Also with my husband in the Navy, we didn’t want to start having children right away. We spent half of the year apart because of his deployments and was happy for it just to be us. In general, I was relieved not to be bleeding for once and didn’t care why.
Periods From Hell
After a year my periods came back and they were once again heavy and painful and would last for 2 weeks at a time. I had horrible lower back pain and had a hard time functioning. I spent a lot of time in bed. My weight also continued to climb (size 26), despite trying to eat healthily. I remember baking my own whole wheat bread and muffins with soy milk, thinking I was doing something good for our family. Oh, the irony.
New Doctor, Same Diagnosis
Scared of ever having to go through another blood transfusion I made an appointment with the doctor on our Navy base. He had no answers for me, and I immediately demanded to be refereed to a local gynecologist. Getting a referral was actually quite difficult because of having Tricare through the U.S. Navy. I may or may not have thrown a huge tantrum in the Navy doctor’s office and refused to leave the building without a referral…
The appointment with the off base gynecologist wasn’t much better. I went through my entire medical history, and how the heavy, painful periods that I had once almost bled to death from had returned. This doctor said it was probably my weight, and again put me on birth control. I remember leaving feeling so defeated and frustrated. Once again I started taking the birth control and although my cycles normalized, I still had continuous spotting.
The Maternal Instinct Kicks In
By now I felt sick all of the time. I didn’t have any energy. I was sick of gaining weight. I felt awful. I knew I didn’t want to keep taking birth control. My husband had just over a year left in the Navy and I knew once he was he discharged I’d want to start a family. I had planned on having our first child around 26, and then another around the age of 28. Also the birth control wasn’t doing anything. At the time I didn’t understand the effects of birth control. I just thought it was the right thing to do.
I stopped the birth control and yes, the bleeding came back. I actually invested in cloth pads because I was using so many pads a day. I literally bled every single day. I spent a lot of time removing blood stains in my laundry and bed sheets. Being intimate with my husband was embarrassing. This was an extremely hard time for me. I started taking iron pills and b-12 to help with my energy levels.
When Enough is Enough
I finally reached the point where I was fed up and started researching my symptoms online. A lot of my symptoms were pointing to a syndrome called PCOS, but most of the women that had PCOS complained of never bleeding. This confused me on whether or not PCOS was something I had.
I continued gaining weight despite watching what I ate. I was now a size 28. My husband was once again deployed on a submarine, and I was determined to get weight off before he returned home. I started weight watchers and joined a gym. I began working out over an hour a day, always on either the treadmill or the elliptical machine. I lost 45lbs in 90 days. My weight loss plateaued. I started to feel really burnt out from the long cardio sessions at the gym. I cut back on the amount of exercise I was doing, and I started to gain weight again. My periods remained the same. Nothing changed. Frustrated and discouraged I quit counting weight watchers points and eventually stopped going to the gym altogether.
From Bad to Worse
Life happened. We moved across the country after my husband was honorably discharged from the Navy. While transitioning from military life to civilian life, our income level dropped drastically and we had to live on the cheap. We also lost our insurance. We ate a lot of rice, beans, and cheap packaged processed foods. I gained all of my weight back and more. I felt awful. My periods became more and more painful. I was anemic. I remember having to lie in bed after getting a shower because I would feel dizzy and faint. My health was at it’s worst.
Changes and Charting
I bought the book Taking Charge of Your Fertility and couldn’t believe how uneducated I was about my own cycle. I also bought The PCOS Workbook. After reading both of these books I was 99% sure I had PCOS. I began using opks, but never got a positive test.
A year passed. We bought a house and moved again (hopefully for the last time). Now that we were more secure and stable in our new home I wanted to get serious about trying for a baby. I was around the age of 27. I was definitely ready! I started to track my cycles using basal body temping. My temperatures were all over the place and looked nothing like the charts in “Taking Charge of Your Fertility.” I had no idea when I was ovulating or if I was ovulating. Because of the spotting I never knew when a new cycle was beginning or ending. This is when reality finally hit me and I had to stop denying the hard truth. Something was very wrong, and I was going to have a hard time getting pregnant. I needed to get healthy. I had no idea how.
I yo-yo dieted for another year, regaining and losing the same 20lbs over and over again. I saw a picture of myself at a wedding and didn’t even recognize the person in the picture. I couldn’t believe how much weight I had gained. I had to buy a new scale because our old one didn’t go past 340lbs. I was wearing 4x tops and I had to buy stretchy jeans from Catherine’s in a size 34. My BMI was off the charts in the “super morbidly obese” category.
The desire for a baby made me determined to get healthy. I started walking and using a nifty website called myfitnesspal.com to track my calories. I lost 50lbs. I started making more of an effort to pick healthier foods. I cut back on eating grains and focused more on lower carb foods. I gained endurance and added toning and HIIT (high-intensity interval training) to my workouts. My periods got lighter and my spotting decreased, but I still wasn’t ovulating. I lost another 50lbs (100lbs total).
Giving up Gluten
My husband was diagnosed with Celiac Disease and our household went gluten free. I knew this was the push I needed to stop eating gluten. I was aware of the fact that gluten was bad for PCOS, but I really liked bread (and I still had no official diagnosis). The transition was hard. I felt overwhelmed at times, but within the first 30 days, I noticed the spotting I suffered from for years and years and years went away. I couldn’t believe it.
After a year of charting, and three months of eating gluten free, I got my first positive opk and a chart with a temperature rise indicating ovulation! Coincidentally it happened the same month I began seeing a new gynecologist.
A 3rd and 4th Opinion and Entering the TTC World
At my first appointment, I asked to be tested for PCOS. An ultrasound and blood work later, I had my diagnosis. Yes, I had PCOS. I had cysts on both of my ovaries and my testosterone levels were through the roof. I had a 21-day progesterone test (seven days past ovulation) but my progesterone was only a 7. High enough to detect ovulation, but not great.
I started metformin. After six months on metformin, I was given Clomid. The first round of Clomid I ovulated late and had heavy spotting until my period began. For the second round of Clomid I asked to be put on progesterone. It worked! I got pregnant! Sadly, I miscarried just shy of 6 weeks.
Heartbroken we took a break. I focused on healing. Looking for answers I found a new gynecologist that was willing to run a blood test for clotting disorders. I had read MTHFR was common in women with PCOS, and I didn’t want to take the chance of getting pregnant and miscarrying again from a blood clotting disorder. The results came back – I have 2 blood clotting disorders. MTHFR and PAI-1. My Dr. agreed I should be on Lovenox during my next pregnancy.
The metformin was making me sick, and slowing down my weight loss. I stopped taking it and felt back to normal within weeks. I started losing weight again. I reached 150lbs down! I went back to my gynecologist to try Clomid again. The side effects were more than I could handle this time around and we didn’t get pregnant.
Healing My PCOS
I took another break and focused on my health. I wanted to get to my goal weight before I started to see a Reproductive Endocrinologist. I did it! 175lbs down! I felt the fittest and healthiest I had ever felt.
Knowing how sick Metformin had made me, I did more research on holistically healing PCOS. Implementing what I had found, I started eating a more paleo based diet and doubled the consumption of green leafy vegetables. I began eating foods to help my body detoxify excess estrogen and bring my hormones into balance. I also scheduled time for doing things I liked that promoted stress reduction. Within two cycles of making these changes, I started ovulating on my own. I began to have textbook cycles. My ovulation day went from cycle day 22 to cycle day 14.
At my first Reproductive Endocrinologist appointment, I had another ultrasound performed and all the cysts on my ovaries were gone and my progesterone came back at 15 showing I had successfully ovulated on my own!
To Be Continued: My TTC Timeline.