On the drive home from my first appointment with the reproductive endocrinologist (RE) I sulked. I was so happy that finally I had an answer to why I wasn't getting a period but I also questioned the diagnosis. Girls with HA have eating disorders, are very under weight, exercise/sports like crazy (this is what I learned in school). I didn't fit this, I ate enough (so I thought), I exercised no more than the average crossfit person (not gonna lie I was HARD into crossfit), I didn't have an eating disorder and my weight was normal (according to me I was overweight but thats another story). So I sat with this and really thought about it. At this point it was really hard for me to trust a doctor due to years of misdiagnoses or subconsciously was it because I really didn't want to stop exercising? So until my next appointment with the RE I continued to question HA vs. PCOS. I really was bent on having insulin resistance, I thought this was the reason why I wasn't losing weight. I exercised my butt off and wasn't eating a ton. The only thing I could attribute to this was insulin resistance. In a nut shell, insulin resistance inhibits the body to be able to lose weight effectively. My thought (because this was what I was taught in school) was less energy in and more energy out equals weight loss (which now I have learned is NOT true). So I begged my RE to run a glucose/insulin tolerance test. He wouldn't, he said there is no point because you are not insulin resistant. So then I called my OB-GYN to see if they would order it, nope. Then I called my primary care doctor and explained the situation and she would not order it. I cried until my eyes were ready to pop out of my head, I needed this test to once and for all confirm my questioning for my diagnosis. Or did I need it for confirmation of why I wasn't losing the weight or had the perfect body because I ate so well and exercised so much?
Mind you I have been investigating and trying to control my PCOS for years. Years of energy spent waking everyday and having this be my mission to "cure" what was causing no period. Years of pushing my self to the gym every day at 5am and then coming home after work and running. Years of eating "clean". Years of obsessing over my body and the abs I always dreamed of. I was exhausted! Mentally and physically. Ladies, this is when I hit my BREAKING POINT and knew it was time to change. I had to stop controlling outside factors and work healing, loving and accepting my body.
You may question, why this happened to a nutrition professional that is Registered Dietitian. Shouldn't I have known better? During my undergrad work we were taught strictly conventional approaches. Weight loss equals less food in and more exercise. We were taught healthy IS eating only "good" foods. We were also taught high weight status is directly related to co-morbidities such as heart disease, diabetes etc. It was not until I graduated and earned my credentials that I learned that everything that was taught in school wasn't everything. As an RD you can venture off into different avenues of nutrition. Practicing nutrition is one of the most diverse practices in the world. Specifically because one way of nutrition does not fit everyone.
Please check out my guest blog on Dr. Nicola Rinaldi's site. Here I explain my journey to becoming a Non-Diet Dietitian. Dr. Rinaldi is the Author of No Period, Now What. Anyone struggling with HA, I highly recommend this book.
For about 5 years I thought I had PCOS. Multiple doctor visits to my OB-GYN ( I even ended up switching OB-GYNs). Both of them confirmed by ultrasound that I had PCOS (note: I had no other symptoms other than an elevated testosterone level years back). So I continued to try to "cure" PCOS through a very strict diet and exercise regime. Throughout the years I was trying to cure PCOS I continued to seek help. No doctor could give me an answer to why I wasn't getting my period. So after a while I gave up. I guess I'll just try to get pregnant because no doctor could tell me why I wasn't getting a period. So begun my fertility journey. First I started with clomid and all the monitoring that came with it. It didn't do anything for me and it just didn't feel right (I still wasn't ready for a baby). Then I stopped trying to get pregnant for a bit and decided to just continue to cure my PCOS. Still no period. Okay, well maybe if I tried an actual fertility clinic they could help me figure out why I have no period. I assumed that they would want to figure out my problem before they determined the course of treatment. Makes sense right?
My first visit with the fertility clinic- which was an hour and a half away from my home and insurance didn't even cover treatment. We met with the doctor. He could not tell me why I wasn't getting my period. UGH, I give up. Just get me pregnant (though my mind still wasn't settled on this course of treatment). So first step was a hysteroscopy. Painful procedure and inconclusive because I am allergic to IV contrast. Next step, the fertility doctor wanted me to take clomid (again) and if that didn't work (again) go for an IUI w/injectable meds or IVF. So we had to take a step back and consider the costs involved. My gut told me this wasn't the way to go and I didn't want to spend thousands of dollars when I didn't feel it was necessary, I mean I still wasn't ready for pregnancy. I just wanted my damn period !!
So time continues to pass....
At my routine OB-GYN check up (with my doctor who I saw multiple times before), finally recommended me to a reproductive endocrinologist (RE) for my PCOS. My first initial thought was WHY THE HELL DIDNT YOU RECOMMEND THIS YEARS AGO?! At the time, I didn't even know what an RE was but I had a good feeling about this.
So my very first visit went as simple as this after I explained my history of my PCOS journey and my very "healthy" lifestyle. "Cynthia, you do not have PCOS you have Hypothalamic Amenorrhea (HA)". I already knew what HA was but I didn't fit that diagnoses. I wasn't anorexic, I didn't have an eating disorder, I was at a normal weight, I was HEALTHY, nope I couldn't have HA. He then proceeded to say stop all exercise. Whoa, wait a second. Stop exercise? So I FINALLY got an answer! But now I have to sacrifice what means the world to me?
Stay Tuned to the beginning of my HA journey and how I overcame it all, got my period back and most importantly starting loving and taking care of myself.
Please note, I am not bashing the doctors above. There is a knowledge deficit with practitioners in regards to PCOS vs. HA. Along with helping woman overcome HA I hope to spread awareness about HA to doctors across the world.
A little detour in my period journey for a minute to focus on the perfect body that I have been trying to achieve since I was like 15.
Growing up, I always remembered my Mom and her side of the family taking about weight. Specifically my Mom always counting calories, talking about how fat she was and making sure she was always exercising to burn off whatever "bad" food she ate. Her side of the family was always talking about (and still talk about) this persons fat, that persons skinny, "wow, look so and so is gaining weight". I'll never forget the day my grandmother asked me if I was pregnant (when I was actually trying to get pregnant). I asked "Why did you ask me if I was pregnant?". She responded "You look heavy". I was crushed to say the least.
My strive for the perfect body continued with me for most of my high school years and through college. Though it didn't really kick into high gear until it was time for my wedding. I HAD to be perfect for this day. I couldn't look fat in pictures, I had to fit into my size 4 wedding dress. So my healthy, clean eating whatever the hell you want to call it was in full effect along with a strict exercise regime. Wedding came, I LOOKED great I finally did it. I was happy in my own skin! Or so I thought......
The wedding went by and I could finally have some "bad" foods again and lay off the exercise a bit, PHEW! My mind needed a break from all the obsessing over the wedding, my diet and how I would look that day. With any "diet" and strict exercise regime once you go off you start to gain weight. Ugh, but I worked so hard I couldn't gain weight again, I was finally "happy". Then started the viscous guilt cycle and body comparison hell. I would look in the mirror and compare myself to my "wedding body" and just wished I could look that way again. We went on our honeymoon 6 months later to Aruba and I was super excited but a part of me wasn't because I was "FAT" again. The picture on the left is "fat" Cynthia and the picture on the right is the "super fat" Cynthia ( I was really just bloated from all-inclusive eating), so fat she couldn't take her bathing suit cover up off during some of her honeymoon pics because she didn't want to remember herself this "fat" in the picture. Seriously?! How could I be this mean to myself?!
Stay tuned for a future blog post on the "Perfect Body" and how I over came all of the above.
Weekly blog posts continue on my journey of regaining my period, having children and becoming the best version of myself !
Determined to "cure" PCOS my exercise regime consisted of Crossfit 6 days (sometimes 7) a week for atleast 2 hours a day and in addition a 3 mile run or other intentional exercise. My eating regime consisted of huge restrictions, nothing "bad" of course and boy if I ate something "bad" you better believe I was in the gym burning it off or beating myself up for eating it. The guilt if I didn't get to the gym or run was INTENSE. I followed a strict Paleo diet because it was supposed to be SO healthy, limited in carbs and everyone at my Crossfit gym was doing it. Not to mention I was a dietitian so I knew what I was doing and I also had to uphold my "healthy" and "fit" dietitian image. I mean who would want to work with a dietitian who wasn't fit or the image of health?
So on continued my intense, strict "healthy" eating regime and drive to cure my PCOS. This went on for about 3 years. During that time I still wasn't getting my period and doctors STILL weren't concerned! I worked with other professionals and doctors to improve my PCOS and even went on Metformin (a drug that helps with insulin resistance and actually has huge success with woman that have PCOS). Still no period. Hmm...okay ready to wave the white flag ! I finally sough fertility help but I still wasn't ready to have kids. I just wanted to know WHY I wasn't getting my period!! The fertility doc just wanted to get me pregnant.
So many woman with HA are diagnosed with PCOS. Check out the resource below for more information.
PCOS Vs. HA
Who Needs a Period? They are a pain in the a** anyway !