The Long Road to My PCOS Diagnosis
You must be your own advocate!
I think my story and how I became diagnosed with PCOS is important to share with others. PCOS can be isolating, and I don’t want anyone to feel as though they are alone. I will not only share what I went through, but I will be forthcoming about how this quest affected me and brought me to where I am today. This journey was very long for me, and I am sure some of you can relate.
Let me begin with a little background. It wasn’t until I turned 31 years old that I was diagnosed as having PCOS. I have exhibited signs of PCOS since adolescence. Once puberty kicked in, the changes started to manifest themselves.
The first thing was a visible change; I had horrific acne. Most people especially in the teen years, experience acne but my experience wasn’t a pimple here or there. My acne was primarily on my face, but I also had it on my shoulders, back, neck, and chest. I was a regular at the dermatologist, or maybe I should say, dermatologists, since I saw quite a few. I tried every product and potion under the sun (you name it, I have tried it). I could have been the 'before' in the Proactiv commercials (it certainly would have been more realistic than their paid spokesperson with one microscopic pimple). It was severe.
As the years progressed, so did the acne. It became cystic and just plain painful. The doctors would always try to treat it, but never looked more in-depth as to why I had this issue in the first place. I often heard the words, 'you'll outgrow it' (still waiting for that day).
If acne wasn’t enough, I had some of the worst periods EVER. My periods were very irregular and extremely painful. I would get cramps so bad I would pass out from the pain (I would regularly take 3 Motrin every 6 hours per the pediatrician’s recommendation). On top of being packed with pain killers, I was glued to a heating pad and would be bent over in the fetal position hoping for some form of relief. Still, no doctor seemed to think this was an issue because I was so young. Once, I could legally advocate for myself without the doctors deferring to my mom; I challenged the doctors because I was tired of being out of commission for a good part of a month and looking like a pepperoni pizza.
Step 1: My first appointment with a gynecologist. After detailing my history and problems, I was prescribed the pill. The GYN put me on a version that helped with acne. (After several attempts to find the right pill for me- Yaz became the winner). Let me tell you, what a godsend. For the first time in my life, I had a clear complexion and my periods were regular, lighter, and the cramps were barely noticeable with a bit of my trusty Motrin. I told myself I was never going back! Problem solved...or so I thought.
Fast forward quite a few years to 2012. I had been dating the man of my dreams and we set a date to get married that year. About a month before my wedding, I went and got an allergic reaction to poison ivy. I had never had it in my life. My husband, who also had been exposed tooth's demon plant, had exhibited symptoms within 24 hours. Not me, it took ten days before I experienced symptoms. It looked like huge red bumps (almost hive like) on my arms and legs. Of course, it happened to be a holiday weekend, so I was stuck with an urgent care facility, and they couldn’t seem to determine or conclude that it was poison ivy. They treated me the same way, though, with a round of prednisone.
A couple of days went by and it kept spreading like wild fire- there were more bumps on my arms and legs and now it appeared on my back and stomach. I couldn't fool around with this... I was getting married in a couple of weeks! I called my primary care and described my tale of woe, and they fit me in immediately (except my doctor was on vacation and I had to see his partner, someone I had never seen before). I left with confirmation that it was poison ivy, and he gave me another round of prednisone. This time, the dosage was increased.
Days went by and things grew worse. I was now a week away from my wedding. I called my doctor’s office again and this time, my doctor was back. He gave me an increased dosage of prednisone and was honest with me when I asked him if this would be gone before the big day. The answer was a big NO! Telling a bride that is pumped up on steroids for over a month that she is going to walk down the aisle with poison ivy probably is a day he will never forget.
He quickly blamed his partner for not giving me enough medication from the get-go. I can’t exactly remember, but I’m sure I had a few choice words for him. You are probably wondering how this all relates to PCOS, but I promise you it does. Like I said this was a very long journey, and you need to know all of the facts.
When you take steroids, you end up putting on weight. I was on three rounds of prednisone and each time the dosage increased. I was on steroids for the duration of a month (I was still taking my final dose well into my honeymoon). By the time I had come back from my honeymoon, I had put on some serious weight. I had gained about 20 pounds in a month’s time. I knew this was not normal, but again none of the doctors seemed to think this was anything to worry about. They told me to watch what I ate and to exercise. (I bet you've heard this a time or two.)
I took it to heart and I went to the gym every day without fail; even the people that worked at the gym knew me by name (I would much rather the “place where everybody knows your name” be somewhere else). With intense cardio, I could not get the weight off. The harder I tried, the scale did nothing but go up. I knew I needed some serious help.
Step 2: Get help losing the weight. I interviewed personal trainers and found one that I thought was qualified and a good fit. He and his partner gave me the education and training I needed to strength train and to build muscle which should, in turn, help me shed some pounds. I worked out with them twice a week and did three days a week on my own. They had also put together a diet plan for me.
I worked with the trainers for a year and I made very little progress. At most I was able to lose about eight pounds. Not much for all the work I had put in and the changes I made to my diet. My trainer was just as perplexed as I was. He told me that the headway I made would typically take someone a month to achieve. He told me, either you’re cheating on the diet end, or there is something seriously wrong. I said to him; I wouldn’t waste all of my money and time just to cheat, and he knew how hard I was working and believed me. If it weren’t for my trainer, I probably wouldn’t have tried as hard as I did to figure out what was wrong. He helped to push me to explore for more answers. He recommended Step 3: Get my thyroid checked.
It is now the beginning of 2013; I messaged my doctor and asked him if he could run some blood work. He ran a simple TSH test and some basic panels. He told me that the results came back “normal.” So I figured everything had to be right. I just had to keep at it!
Several more months passed, and I still was not seeing any noticeable difference in my weight. I decided to schedule a thorough workup with my doctor. I told him that I specifically wanted him to test my thyroid and that I was suspicious it was off. My doctor ran more tests specifically focusing on my thyroid function. When we went over the results, he again told me I was nothing but 'normal'. I told him about being unable to lose weight and how I always felt so fatigued, and he stated that weight loss is scientific. It is simple math, calories in vs. calories out. I left that appointment feeling depressed. I knew it wasn’t that simple for me. Why was he ignoring what I was telling him?
Something was off; I knew my body, and it wasn’t operating efficiently.
I figured if my primary care didn’t think there was anything off, then it would bring it up with my gynecologist at my annual exam. She noticed that I had put on some weight and advised me that I need to drop a few. I told her that I agreed and was working hard to do just that but that I was having no luck. I mentioned possibly having a slow thyroid and told her my numbers. She confirmed that my metabolism was sluggish but that it was still considered “normal.” I left there with no answers and still feeling as though I would never get to the bottom of this issue.
Step 4: Nontraditional intervention (aka frustration sets in). Still searching for answers, I was recommended to an acupuncturist, who was supposed to be a miracle worker. I was very hesitant to see her because I am not a fan of needles and wasn’t sure if I could handle acupuncture. Well, I got past my fears and became a regular client of Dr. Xie. She knew her stuff, and she helped me the best she could. She told me that I had a slow thyroid and that my Qi was unbalanced. She treated me with all kinds of methods including acupuncture, acupressure, cupping (which I liked and found beneficial for pain), oils, herbs, and supplements.
Even with all that, I entered 2014 still stuck. I decided to take matters into my hands. I called around and tried to find a practice/endocrinologist that would see me without a referral from my primary care (since he refused to give me one). Eventually, I found a practice that did not require a referral, however, the doctor needed to see my charts ahead of time and agree to take me on as a patient. I called their office almost every day, wondering if the doctor had reviewed my chart and if I could schedule an appointment. After almost a month of this, I was finally able to schedule an appointment...but it would be months away.
Step 5: Endocrinologist. I had geared up for my appointment, I was armed with all of my lab results, and wrote down things that I had wanted to discuss with her. This was my shot! I remember her coming into the room and being very cold and emotionless. I explained my long history and started rattling off my symptoms to her. She stopped me, and I will never forget it, she told me that I was depressed. There was nothing wrong with me and that perhaps what I needed was to be on medication for depression. She then got up and left the room. I sat there, confused and extremely pissed off. Was the appointment over? Was that it? Apparently it was.
I sat there for a good ten plus minutes for her to never return. Talk about poor bedside manner. I couldn't believe I had to pay hundreds of dollars for nothing. What was the point of the doctor reviewing my charts ahead of time to be approved as a new patient only to be brushed off at the visit as not needing her help? That still irritates me today! I left outraged, and when I got to my car, I broke down crying. No one would listen to me. I think this was one of my lowest points. I felt like throwing in the towel. I had been to several doctors, and all of them did nothing to help me. In fact, they started making me question myself. Was this all in my head?
At this point, I was beside myself with frustration, and I felt utterly hopeless. I remember having had a discussion with a friend of mine. I unloaded all of my frustrations and feelings of despair to her. Bless her soul, she listened and was supportive and agreed that there must be something going on. About a week or so later, she sent me a text that helped me move forward on the right track. Her sister was seeing a women’s health/OB-GYN group that had put her on meds for a thyroid that wasn’t at an optimal range. My friend knew that my numbers were much worse than her sister’s and referred me to the practice.
Step 6: Thyroid revisited! Luckily, I was able to get an appointment fairly quickly with one of the APRNs. I made sure I had copies of all of my labs and tests so that we did not need to waste time running everything again. I was all ready with my speech and felt as if I was a lawyer preparing to plead her case with all of these healthcare professionals. The APRN was phenomenal and took one look at my labs and before I could start reciting my meticulously crafted case, she told me that I need to be on Synthroid right away. I couldn’t believe what I was hearing. Someone had FINALLY listened and acknowledged that something was wrong. I left that appointment as happy as a clam. I thought this was the answer to all of my prayers!
After several months of working with the doctors to get the dosage right, I finally started to feel a little better. My energy which was nonexistent was actually coming back a little bit. I continued to work out and eat healthier. I thought it would be a matter of time until the weight came off. Well, sadly the weight did not come off.
We are now well into 2015. My husband and I had decided that we wanted to start trying to have a baby this year. We were excited and looked forward to the experience. I decided to schedule my first annual exam with this new women’s health group. I wanted them to have a baseline of me before getting pregnant. At the appointment we reviewed everything, and I told them that I was worried about my weight and had some concerns about how it would affect me during pregnancy. The midwife listened to me and based on what symptoms I presented; she thought it sounded like PCOS. So she ordered some blood work and more tests. I went right away and within a few days, the doctor’s had called me to do more tests, specifically a glucose tolerance test. Once the results came in, the doctor’s had referred me to an endocrinologist. It took over a month to get scheduled for an appointment (paperwork was constantly being “misfiled”), but I got an appointment. More hurry up and wait; the appointment was for three months out.
Step 7: Endocrinologist, take two! I wasn’t fazed by this appointment, frankly I entered most doctor's appointments semi-numb. I figured I would get nowhere as usual and had extremely low expectations. To my surprise, this endocrinologist had the exact opposite reaction to the first one I had seen. She listened to me and understood my symptoms and wanted to help. She even diagnosed me on the spot with PCOS. Finally, someone that knows what they are talking about!
I felt so happy and relieved to finally have an official diagnosis. I wasn’t crazy!
There was something wrong and unfortunately, for me, it was a long and emotional ordeal to get diagnosed. Too many doctors had dropped the ball and missed my diagnosis and it cost me years of frustration and struggle.
The sad truth is, most doctors don’t pick up on PCOS until you are trying to get pregnant. A woman should be taken seriously regardless of whether she wants to have children or not (a rant for another day). This is a disease that gets over looked too often and should be given so much more attention. Too many doctors either don't know enough about it, don't look at all your symptoms AS A WHOLE, or go by out-of-date criteria when evaluating you.
I share my story to let you know you are not alone. You need to listen to yourself and trust your gut. You know yourself better than anyone. If you know something isn’t right, YOU MUST FIGHT FOR YOURSELF. You must be your own advocate. There were so many lows on my journey, and I almost gave up several times, but the one thing I did not allow to die was hope.
At times, my hope was hanging on by a thread, but it was an important thread. Do not give up. You can do this! PCOS isn’t an ideal diagnosis, and it is something that I will deal with for the rest of my life, but at least now I know what I am dealing with, and I can create a plan to manage my symptoms. That gives me back control (and sanity).
I will not let PCOS interfere with my life and dreams.
I believe that Powerful women Can Overcome Symptoms! This is my mantra, and I hope you will adopt it too! I created this blog as a place for us to empower each other and to help one another. Please feel free to tell me about your journey with PCOS in the comments below. I am looking forward to connecting with you! We can be each other’s support.
Thanks for taking the time to learn more about me and my story!