Part 1: PCOS - The Beginning
I've been dragging my feet on this post for a couple months. My initial intention for starting a blog was to share my life with Polycystic Ovary Syndrome (PCOS), but the truth is... it's personal. There are so many different emotions associated with it from the diagnosis, to the tests, to the unknown future. In fact, I wish this wasn't part of our story, but it is and I'm going to try to make the best of it. I know there are people out there on their hands and knees praying to be in my shoes because they are in a way more difficult situation. I pray for those people every night. So, here goes nothing...
Polycystic Ovary Syndrome (PCOS) - sounds scary, doesn't it? It's really not that scary, but any diagnosis with the word "syndome" in it is a little intimidating. It's especially intimidating, maybe more frustrating, when it's a syndrome that's not totally understood by medical professionals. They don't know what causes it, what "cures" it, or even how to truly treat it.. yet. PCOS commonly shows up around puberty, but it can go unnoticed for years. PCOS is one of the leading causes of infertility in women of childbearing age - this is typically when it's diagnosed in most women.
Looking back, I could probably pinpoint when I started experiencing PCOS just based off of the symptoms. In 2014, my cycles were very irregular and my anxiety was through the roof. I never really experienced anxiety until 2013-2014; however, my mom was diagnosed with anxiety years ago. The anxiety worsened and I attributed my irregular cycles to stress. I know that when I'm overly stressed out, it delays my period. Never fails. So, I guess I just kind of wrote it off as stress and didn't put too much more thought into it. In 2014, I suffered a severe concussion and ended up gaining a bunch of weight. I attributed the weight gain to the concussion and lack of being able to workout. I was also having major issues with sleep.
Doctor #1 - Stress
In 2015, my husband proposed and we started talking about our future. We knew we wanted to have babies and we knew we wanted to start trying after our wedding in 2016. My cycles were still irregular and stress levels were heightened when wedding planning began. I was working full time as a police officer (shift work) and decided to change jobs shortly after getting engaged. Change of jobs + wedding planning = STRESS. I was overweight and knew I needed to make a change. Lack of sleep, stress, weight, etc can affect menstrual cycles and cause them to be irregular. In 2016, I finally decided to go to the doctor because I just didn't feel good. The anxiety, weight gain, and irregular cycles were extremely frustrating. The doctor suggested I take a blood pregnancy test, even though I told her multiple times I knew I wasn't pregnant. Sure enough, negative. Duh. I shared my concerns with her and she basically told me my cycles were irregular due to stress.
Doctor #2 - Prescription Fix
In 2016, we said "I do" and decided to start trying for a baby. I was somewhat working out, but was still overweight and wasn't putting a whole lot of effort into workouts. The weight gain, fatigue, irregular cycles, anxiety, mood changes, and headaches were still all there. I decided to go see an OBGYN at our local clinic to see if she would be able to give me any answers. I explained that we had been trying to have a baby, but had no luck. I also told her that I felt like something was "off" and was concerned. She prescribed me Clomid (50 mg) and told me to call her if it worked or not. (**Clomid is commonly prescribed to assist with ovulation in people with PCOS). Clomid didn't work because I was not pregnant; however, I did finally have a positive ovulation test. When I told her about the outcome, she prescribed it again. No tests, no ultrasounds, nothing. I didn't fill the prescription.
It should probably be mentioned that Clomid comes with some nasty side effects - mood swings, cramps (i.e. feels like your ovaries are on fire), headaches, hot flashes, and more. I always took mine before bed so that I slept through most of the side effects.
Doctor #3 - The Diagnosis
At this point (2017), I decided to be my own advocate because I felt like nobody was listening to me. I started looking into what Clomid was and learned that it was used to help treat infertility. It is commonly prescribed for women with PCOS or Endometriosis and when prescribed, should be monitored via ultrasound or blood work (I was not monitored by Doctor #2). This is the first that I had ever heard of PCOS. I did further research and found that all of my symptoms pointed to PCOS. One big word that stuck out was infertility. I shared my symptoms with one of my coworkers and told her that I thought it could possibly be PCOS. To my surprise, she told me that she had been diagnosed with PCOS prior to having her daughter. She suggested that I go see her OBGYN because she was a great doctor and would figure out what was going on. I took her advice and made an appointment. I shared my concerns with the doctor and she immediately ordered blood tests, as well as an ultrasound to view my ovaries. Just as I suspected, I was diagnosed with PCOS within a couple hours of my appointment. My hormones were out of whack and my ovaries were covered in cysts. Finally, answers. Not the answers I expected or wanted to hear, but they were answers. I am so thankful for my coworker and friend who suggested I see her doctor!
With these answers in mind, this doctor prescribed me Letrozole (2.5 mg). This is another drug used to treat women with PCOS or women with ovulation issues. I was monitored via blood work and learned that the Letrozole didn't work. She then prescribed me Clomid (50 mg), which didn't work. After that, she prescribed me a higher dose of Clomid (100 mg). Again, didn't work. At the beginning of 2018, she told me something I didn't want to hear.. "Treatment isn't working, you'll have to see a fertility specialist." Ugh. Insert broken heart.
Why the broken heart? Because I knew that our insurance wouldn't cover fertility testing or any sort of treatment. I knew I'd have to go through even more testing, specific to infertility, which meant that it would all have to be paid out-of-pocket. We, unfortunately, don't have a bank account full of unlimited money. With that, we wait.
Frustration
Few things are more frustrating than wanting something SO BAD and knowing that you can't just make it happen. It's frustrating that insurance companies aren't required to contribute to infertility testing, especially since it is recognized as a medical diagnosis. In fact, there are only a handful of States that require insurance companies to contribute to infertility testing or treatment (Minnesota is not one of them, of course). It's not something that will just get better on its own. It's frustrating knowing that I spent months going to different doctors that just wrote it off as stress, even though I shared legitimate concerns. It's frustrating when people say "Just be patient, you will have a baby when the time is right" - no, actually that's not how it works when you have PCOS or infertility issues. My body does not work how it's suppose to. My hormones are out of whack due to PCOS, which doesn't have an "easy fix". It's frustrating knowing that I may never be a mom. It's frustrating knowing that doctors don't really understand PCOS; therefore, trying to treat it is basically trial and error. What works for one person probably won't work for another. It's frustrating when people constantly ask "When are you guys going to have kids?" or "What are you guys waiting for?" Well, funny you should ask... ha! Seriously. Frustrating. But, this is a chapter in our book of life. We will keep moving forward and praying for our miracle baby.
Why Share?
I don't share this for attention. Heck, I was totally hesitant on sharing. I share because if you find yourself navigating the unknown with infertility, you are not alone. People who have never suffered from infertility don't understand it whatsoever. It can make you feel alone and secluded. It will seem like everyone around you is announcing their pregnancy, while you secretly wipe tears away knowing that you may never get the chance to share your own. You are not alone. In fact, 1 in 8 couples are impacted by infertility. 1 in 8 - that's way more common than it should be and another reason why it should be covered by insurance plans in every State. Infertility can cause strain on your relationship, friendships, and your every day life. You will feel anger, sadness, denial... all of that. Infertility is tough to talk about because you don't want to be that couple or that person. Well, it's our reality and we are going to make the best of it. I have no doubts that we will be parents some day. The road to parenthood will not be easy, but it will be worth it in the end.
If you are the praying type, please send a prayer or two our way! If you find yourself going through infertility, know that I'm praying for you as well!
"And now these three remain: FAITH, HOPE, LOVE. But the greatest of these is Love."
- 1 Corinthians 12:13
xoxo, Krystal
Check out Part 2 of our story at PCOS - Diagnosis & Testing.
Polycystic Ovary Syndrome (PCOS) - sounds scary, doesn't it? It's really not that scary, but any diagnosis with the word "syndome" in it is a little intimidating. It's especially intimidating, maybe more frustrating, when it's a syndrome that's not totally understood by medical professionals. They don't know what causes it, what "cures" it, or even how to truly treat it.. yet. PCOS commonly shows up around puberty, but it can go unnoticed for years. PCOS is one of the leading causes of infertility in women of childbearing age - this is typically when it's diagnosed in most women.
Looking back, I could probably pinpoint when I started experiencing PCOS just based off of the symptoms. In 2014, my cycles were very irregular and my anxiety was through the roof. I never really experienced anxiety until 2013-2014; however, my mom was diagnosed with anxiety years ago. The anxiety worsened and I attributed my irregular cycles to stress. I know that when I'm overly stressed out, it delays my period. Never fails. So, I guess I just kind of wrote it off as stress and didn't put too much more thought into it. In 2014, I suffered a severe concussion and ended up gaining a bunch of weight. I attributed the weight gain to the concussion and lack of being able to workout. I was also having major issues with sleep.
Doctor #1 - Stress
In 2015, my husband proposed and we started talking about our future. We knew we wanted to have babies and we knew we wanted to start trying after our wedding in 2016. My cycles were still irregular and stress levels were heightened when wedding planning began. I was working full time as a police officer (shift work) and decided to change jobs shortly after getting engaged. Change of jobs + wedding planning = STRESS. I was overweight and knew I needed to make a change. Lack of sleep, stress, weight, etc can affect menstrual cycles and cause them to be irregular. In 2016, I finally decided to go to the doctor because I just didn't feel good. The anxiety, weight gain, and irregular cycles were extremely frustrating. The doctor suggested I take a blood pregnancy test, even though I told her multiple times I knew I wasn't pregnant. Sure enough, negative. Duh. I shared my concerns with her and she basically told me my cycles were irregular due to stress.
Doctor #2 - Prescription Fix
In 2016, we said "I do" and decided to start trying for a baby. I was somewhat working out, but was still overweight and wasn't putting a whole lot of effort into workouts. The weight gain, fatigue, irregular cycles, anxiety, mood changes, and headaches were still all there. I decided to go see an OBGYN at our local clinic to see if she would be able to give me any answers. I explained that we had been trying to have a baby, but had no luck. I also told her that I felt like something was "off" and was concerned. She prescribed me Clomid (50 mg) and told me to call her if it worked or not. (**Clomid is commonly prescribed to assist with ovulation in people with PCOS). Clomid didn't work because I was not pregnant; however, I did finally have a positive ovulation test. When I told her about the outcome, she prescribed it again. No tests, no ultrasounds, nothing. I didn't fill the prescription.
It should probably be mentioned that Clomid comes with some nasty side effects - mood swings, cramps (i.e. feels like your ovaries are on fire), headaches, hot flashes, and more. I always took mine before bed so that I slept through most of the side effects.
Doctor #3 - The Diagnosis
At this point (2017), I decided to be my own advocate because I felt like nobody was listening to me. I started looking into what Clomid was and learned that it was used to help treat infertility. It is commonly prescribed for women with PCOS or Endometriosis and when prescribed, should be monitored via ultrasound or blood work (I was not monitored by Doctor #2). This is the first that I had ever heard of PCOS. I did further research and found that all of my symptoms pointed to PCOS. One big word that stuck out was infertility. I shared my symptoms with one of my coworkers and told her that I thought it could possibly be PCOS. To my surprise, she told me that she had been diagnosed with PCOS prior to having her daughter. She suggested that I go see her OBGYN because she was a great doctor and would figure out what was going on. I took her advice and made an appointment. I shared my concerns with the doctor and she immediately ordered blood tests, as well as an ultrasound to view my ovaries. Just as I suspected, I was diagnosed with PCOS within a couple hours of my appointment. My hormones were out of whack and my ovaries were covered in cysts. Finally, answers. Not the answers I expected or wanted to hear, but they were answers. I am so thankful for my coworker and friend who suggested I see her doctor!
With these answers in mind, this doctor prescribed me Letrozole (2.5 mg). This is another drug used to treat women with PCOS or women with ovulation issues. I was monitored via blood work and learned that the Letrozole didn't work. She then prescribed me Clomid (50 mg), which didn't work. After that, she prescribed me a higher dose of Clomid (100 mg). Again, didn't work. At the beginning of 2018, she told me something I didn't want to hear.. "Treatment isn't working, you'll have to see a fertility specialist." Ugh. Insert broken heart.
Why the broken heart? Because I knew that our insurance wouldn't cover fertility testing or any sort of treatment. I knew I'd have to go through even more testing, specific to infertility, which meant that it would all have to be paid out-of-pocket. We, unfortunately, don't have a bank account full of unlimited money. With that, we wait.
Frustration
Few things are more frustrating than wanting something SO BAD and knowing that you can't just make it happen. It's frustrating that insurance companies aren't required to contribute to infertility testing, especially since it is recognized as a medical diagnosis. In fact, there are only a handful of States that require insurance companies to contribute to infertility testing or treatment (Minnesota is not one of them, of course). It's not something that will just get better on its own. It's frustrating knowing that I spent months going to different doctors that just wrote it off as stress, even though I shared legitimate concerns. It's frustrating when people say "Just be patient, you will have a baby when the time is right" - no, actually that's not how it works when you have PCOS or infertility issues. My body does not work how it's suppose to. My hormones are out of whack due to PCOS, which doesn't have an "easy fix". It's frustrating knowing that I may never be a mom. It's frustrating knowing that doctors don't really understand PCOS; therefore, trying to treat it is basically trial and error. What works for one person probably won't work for another. It's frustrating when people constantly ask "When are you guys going to have kids?" or "What are you guys waiting for?" Well, funny you should ask... ha! Seriously. Frustrating. But, this is a chapter in our book of life. We will keep moving forward and praying for our miracle baby.
Why Share?
I don't share this for attention. Heck, I was totally hesitant on sharing. I share because if you find yourself navigating the unknown with infertility, you are not alone. People who have never suffered from infertility don't understand it whatsoever. It can make you feel alone and secluded. It will seem like everyone around you is announcing their pregnancy, while you secretly wipe tears away knowing that you may never get the chance to share your own. You are not alone. In fact, 1 in 8 couples are impacted by infertility. 1 in 8 - that's way more common than it should be and another reason why it should be covered by insurance plans in every State. Infertility can cause strain on your relationship, friendships, and your every day life. You will feel anger, sadness, denial... all of that. Infertility is tough to talk about because you don't want to be that couple or that person. Well, it's our reality and we are going to make the best of it. I have no doubts that we will be parents some day. The road to parenthood will not be easy, but it will be worth it in the end.
If you are the praying type, please send a prayer or two our way! If you find yourself going through infertility, know that I'm praying for you as well!
"And now these three remain: FAITH, HOPE, LOVE. But the greatest of these is Love."
- 1 Corinthians 12:13
xoxo, Krystal
Check out Part 2 of our story at PCOS - Diagnosis & Testing.
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