It started in my first year of college at 18 during my assessments class, and I felt this deep, sharp pain in my lower right abdomen. Just a constant stab every few minutes, it literally took my breath away. I called my instructor over and explained what was going on, and I was immediately taken to the hospital for fear that my appendix would rupture, as that is the textbook sign of appendicitis. After getting some testing done, turns out it wasn’t even my appendix, it was my ovary.
Further ultrasounds had shown I had a cyst on my right ovary with a diameter of 7.3 centimetres.
They weren’t going to remove it.
Why? I couldn’t tell you.
I was sent home to wait for it to burst and that would be the end of it.
Well the pain came back, then it was on my left ovary, but then right, and it has now primarily stayed on my right ovary for the last 11 years.
The best way I can describe this pain, is it feels like a sharp corkscrew stabbing my ovary, and digging deeper as it twists. It still takes my breath away.
It didn’t occur to me that there was something really wrong when I started to gain a lot of weight during college. Of course everyone knows about the ‘freshman 15’ and the ‘relationship 20’, and I just assumed that was my case considering I was stressed out in school, and I was newly dating my husband. But to gain 100lbs in a span of 4 years is not normal.
In addition to that, I started growing darker facial hair when I was around 19, and the humiliation of needing to tend to that still follows me to this very day. People say they’ve never noticed it, but I have anxiety going out and seeing someone I know possibly seeing a hair or two that I’ve missed shaving.
So here I was, already so defeated and self-conscious about the weight gain, I just blamed myself because I assumed it was food-related, but even more so when I couldn’t lose weight for my wedding.
In a desperate plea to try to have some normalcy in my life (considering I just accepted that maybe I’m just naturally a fat girl) I tried targeting the facial and neck hair at least with laser hair removal. I thought it would be a great investment for the wedding day, but also my mental state so I didn’t have to literally shave my face every other day, if not every day. I was told I was the perfect candidate for laser because of the contrast of my dark hair to my light skin, and I was able to withstand the pain so she had the machine at its strongest level. I went for 14 sessions (1 every 3 weeks, I never missed one), and there was success for only 3 months after my last session.
And the fact it did fuck all killed me.
The pain and cost of laser literally down the drain.
My facial and neck hair started to grow back a month before my wedding, so naturally I experimented with waxing. I absolutely regretted that decision because I broke out bad, but fortunately only a few fading bumps were left on the day of.
Now here comes the nesting phase after being newly married. And did I ever NEST.
I moved to another city as we were new homeowners a month after getting married, and I was only concerned about how we were going to start shaping our lives as husband and wife, with all of the responsibilities of keeping ourselves alive and a roof over our heads.
Over the next couple of years after moving, I was invited to girls nights back home in Scarborough often, but I always declined because I was so embarrassed that I gained more weight. It wasn’t much more, but I was afraid of being the subject of gossip so I figured if I removed myself from a possible situation where I would be uncomfortable, I would be ok. Being anti-social was ok. Or so I thought.
But then the invites stopped coming. I shouldn’t have been surprised, after all, I kept declining right?
Although it still makes me sad that I don’t have some of those relationships anymore, I know I needed to go through this time in my life, so I could focus on me and to build a marriage.
After 5 years of suffering from these signs and symptoms, I was determined to figure out what the hell was wrong with me because I just knew something was up. In another assumption, I thought I was just a woman that had irregular periods, but to have a gap of 2 months between cycles, or even 2 cycles within the same month over a period of 3 months was another alarm.
So I started looking for a new family doctor as my previous doctors ethics resulted in me firing her.
It took me 2 years of researching. I read reviews of doctors local to me and the surrounding cities (because I am the type of person who will travel) and asking my own patients about their experiences with their family doctors.
Then one day it happened.
I saw a patient of mine who has PCOS (as it was on her health history form), and I just straight up asked her how she liked her doctor because I was on the hunt for one. I only heard compliments, she gave me the contact info, and I prayed that this doctor was accepting new patients.
And she was.
I booked a meet-and-greet appointment with her not expecting to address any issues, but she just asked what was going on.
So I had verbal diarrhea.
I explained feeling this pain since I was 18, the confirmed ovarian cysts from ultrasounds, I printed off 4 pages of full year calendars and highlighted my cycles to show her that they were irregular, and of course, the facial hair.
She agreed that it could definitely be PCOS.
She also respected the fact that I am in the healthcare industry as well, and not once did she ever doubt my capabilities or knowledge of the body.
She ordered extensive blood work, ultrasounds, and a follow-up. But she was going on maternity leave in the next month so I had a lot of catching up to build my file with all of the information she needed.
Results took longer than expected, and I wasn’t able to see my doctor for 8 months. I did see another doctor who was covering for her, however she had said my ultrasounds showed no cysts.
Although, when I mentioned this to my liver specialist as he suggested to look into a possible endocrine root cause of my possible PCOS and all of the signs and symptoms I developed, he confirmed that I did have cysts on my ovaries.
So why did my interim doctor give me incorrect information? I couldn’t tell you.
I just decided to wait until my family doctor was back from leave to continue the hunt of my diagnosis.
And so I waited.
After newer blood work had shown to be very abnormal and she gave me the PCOS diagnosis, my family doctor referred me to an Endocrinologist. A possible 8 month wait ended up being 6, we spoke in detail of every aspect in my life, and was sent for more bloodwork to be done while fasting, and specifically on my 3rd day of my cycle.
That alone took a couple of months to complete because my first day of my cycle, isn’t really the true first day as it would only consist of spotting. Ladies, you know.
Another 6 month wait for just the results.
I was having anxiety (another symptom of PCOS) thinking that he was going to tell me that my cholesterol was high, I’m pre-diabetic, I have hypothyroidism, etc only to have him call me for a phone appointment (because of the COVID lockdown) and tell me that all of my numbers are better than perfect.
Better than perfect? This doesn’t add up.
How is he telling me that, yet here I’ve been feeling this daily ovarian pain, shaving a beard, anxiety becoming more prominent, weight gain with extreme difficulties losing it? Don’t get me wrong though, I am grateful to know that I’m not pre-diabetic and have perfect cholesterol.
So he prescribed birth control to help with the facial hair considering that was one of my biggest complaints. I did buy 1 pack only so that I didn’t have to wait a year to see him again for another script because I’m taking matters into my own hands now. If it fails, maybe I’ll take the birth control, but I probably won’t. The majority of doctors don’t truly understand PCOS and it’s easier to tell someone to lose weight and write a script for birth control. I’ll be getting a second opinion.
My most recent symptom I’ve been trying to manage is constant fatigue (even after sleeping 10 hours) and my acne that I get only because of shaving, but I know I can have it worse. Many women with PCOS also have fertility issues. I don’t know if I’ll be in that category as my husband and I haven’t tried to start a family yet, so we don’t know where we stand with that.
I’m going to experiment with seeing a Naturopathic doctor, eating a PCOS-specific diet, and completely revamp my exercises that work best for women like me, all with the support of my family doctor.
I’m putting in the effort to change my life so I can say;
my name is Dorota and I have Polycystic Ovarian Syndrome
not
my name is Dorota and I suffer from Polycystic Ovarian Syndrome.
If any of you are suffering silently like I was, I’m someone you can talk to, and you will have my love and support.
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