My Journey With PC0S... So Far
Roughly one in 10 women has PCOS in the world, and so many go undiagnosed, I think that statistic is at about a 70%.
A couple disclaimers about this piece: firstly, I am not a medical professional so please consult your physician for any specific medical related advice. This piece is about my journey, and how I dealt with my situation and the hope is by reading this some of you feel less alone or can learn from how I went about this journey. Again this is about my journey and is my opinion. Finally, there are some medical details in here so if blood / medical language is something that may bother you, please read at your own discretion.
Something is wrong
I had always grown up with my weight fluctuating, at times I was really skinny and other times I was slightly chubby, but I had always hovered around the same body shape and type. In college I danced on average of 3-5 days a week for 2-3 hours a day but after leaving college that stopped. I joined a gym and started personal training about 1-2 times per week after college and in 2018 I landed a M&A job locally. Even though it was local, the commute time was still about 1-2 hours each way. Along with starting Anis Collections my schedule was the following with eating, sleeping in between there:
Workout: 5am-6:30 am
Work: 7am - 7pm
AC: 8pm -12am
Around February of 2019 I started to notice that something was not quite right. I was killing myself at the gym, doing every type of workout imaginable however suddenly I had gained about 60 pounds. I have always had a relatively healthy diet, very balanced and with fresh foods, so nothing had changed there, if anything I was eating way less just because my stomach started to hurt every time I ate almost anything. With the combination of these two, it just was not making any sense how I had gained so much weight in such a short amount of time. I also had always had irregular periods but now they just had disappeared for 3 months at a time.
Diagnosis
I finally made an appointment with my PCP and lucky for me she was also a gynecologist. She asked me about all of my symptoms as well as my mental health and stress levels -- which were not great due to the toxic nature of my job at the time. This is when the testing started and for someone that hates needles, I had to get used to them very quickly. I was getting blood drawn almost every other week and finally we realized that something was off about my hormone levels.
PCOS normally is 2 out of the following 3 symptoms:
Cysts on your ovaries - found through getting an ultrasound
Missing / irregular periods
Irregular hormone levels - physically this can be seen via acne or facial hair but is also found in your bloodwork
What makes PCOS so hard to diagnose is the fact that all these symptoms can be varied and be different from one person to another. There are also a ton of other symptoms that come with these that could easily be attributed to another disease, so it just was a process of elimination when it came to figuring out what was wrong with me.
The symptoms I noticed were:
Missing periods - I was getting my period once every 3 months and it was very light but would be incredibly painful with really bad cramps, migraines and really bad mood swings (PMDD).
Excessive weight gain
Not being able to digest carbs - this goes back to the stomach pain after eating literally anything or bloating even from not eating anything
Fatigue - this one I didn't notice as much because I was constantly working and so I attributed it to that solely but I was exhausted all the time
Hair Loss - I lost SO much hair it was crazy
Abnormal blood work
Here is what I didn't see - these are the two most common things :
Cysts on my ovaries
Facial hair / excessive hair growth or acne
Once we found abnormalities in my bloodwork, I was quickly referred to an endocrinologist who could take over and figure out how to treat me. It was not only the hormone levels that were abnormal but I had an abnormal level of Prolactin and exhibited no signs or symptoms of this either. They potentially thought I could have a prolactinoma on my pituitary gland in my brain causing the levels to be high so I had to get a CT and an MRI - truly a brain MRI for a claustrophobic person is torture. Once these were ruled negative it was time to talk through treatment.
While I had medical professionals trying to figure out what was wrong, my doctors recommended I also start seeing a nutritionist for my stomach issues. I quickly realized that carbs were really the problem for my body along with anything overly spicy which was a challenge for me being Indian and loving food. For the 3 months while we figured out what was going on, I was reduced to a diet of grilled proteins and boiled vegetables - the only way my stomach wouldn't freak out on me.
Overall it took us from March 2019 - September 2019 to get to treatment options factoring in all the blood work, MRI, ultrasound, CT scan and more.
Treatment
My mom and I had agreed on one thing, I only wanted to be put on medication if it was absolutely necessary. I am someone who hates taking pills and also is quite forgetful when it comes to medication so we wanted a solution that would work with me. My doctors were also the same way and did not want to prescribe just to have me on a ton of pills. We started with metformin which in about a month helped me start to process carbs again and made me lost about 25 pounds almost instantly. Now this medicine is not for weight loss, I only mention this because my body was able to process sugars again so the weight and bloating went away. This started to solve my symptoms and made a little bit of progress on the hormone levels but did not solve my prolactin level. I was then put on Cabergoline which is for my prolactin levels and that managed to do the trick. Metformin also started to make my periods more regular than they were.
We went on a few months for these two medications working their magic but I still was not fully better. I still could never predict when my period was coming and when it did come I was extremely depressed - like to the point where I couldn't get myself out of bed, I also had such bad cramps.
I went back to my PCP with these concerns and the only solution we had not tried yet was birth control pills -- which my mom was totally against. She worried that this would impact my fertility down the road however they were the only thing we had not tried and my doctor was worried that now in an effort to avoid them, we were sacrificing my quality of life. Finally my mom agreed and we started with birth control about 2 years later in February 2021.
The first birth control unfortunately was not the right fit, it improved all my symptoms but made me bleed for 3-4 weeks straight. Not only that but it extremely inflated my liver enzymes. My doctor had warned me and said she was only willing to try 3 oral prescription options before we moved to IUD options. The second one was a good fit and I am still on that one currently with no issues to be reported!
Present Day
Now that I am on a treatment plan that works, I am a lot better and my quality of life is better as well. This does not mean that my body is always 100% cooperative but I am constantly evaluating if something is wrong and when I need to call my doctor. If you're going through something similar here are my tips when it came to my situation:
Learn to be in tune with your body - this takes time and especially when you don't know what is going on, do not try this. Once you're in a good phase, really take time to listen to your body
Advocate for yourself - had I not had such great doctors, I would have needed to be more vocal and there still were times where I was. You know what you need best so ask questions, and if you don't like something or aren't sure, speak up.
Only involve people you trust and tune out the noise - I needed my mom as a support system but I also valued her opinion. Throughout my journey, I had constant aunties commenting on my weight gain and it hurt but I learned to just tune out that noise. I also would constantly have people giving me advice and that also was something I learned to just tune out if I knew it wouldn't work for my body.
Don't be scared to call your doctor if something doesn't feel right - recently I went through a period of not feeling right and I finally called my doctor and there was a problem. Again, you know you best.
I hope this helps anyone who is going through a similar situation!