Even though this post is about some really personal stuff, I have decided to make it public because I have learned a lot from reading the stories of other women with PCOS. Through their stories it has helped me to understand and accept my own story. Maybe with this post I can pay it forward.
Recently I have been reaching out to an online community of women who live with Poly Cystic Ovarian Syndrome. It has taken years of internal processing for me to reach a point where I wanted to accept and learn to deal with this issue and this is the point I’m at. In the forum I visit, many women discuss wanting to return to some aspect of their life “before PCOS” for me that seems odd. When I got my diagnosis, nothing changed. I just felt like there were suddenly answers for all of the weirdness that had been a part of my being.
Let me start at the beginning.
When I was ten (grade five) I got this strange pain on the right side of my abdomen. It started as a sharp pain, almost like a snapped elastic band inside me, the pain went through me front to back, and lingered, making it hard to breathe. Within a day it subsided to a dull ache. My mom took me to our family doctor to get checked out, and she checked me out and said I was fine. I can’t remember if it was that night or a day or two later, but I was in my mom’s room, eating a Big Mac and watching Bill Nye the Science Guy, suddenly it felt like I had been shot through my side. Taking more than a shallow breath only increased the pain. I went to my mom for help. She says my face was white as a ghost. She took me to Emerg. The doctor on call did a quick exam, maybe a blood test, I don’t really remember… But no ultrasounds or anything and said I was suffering from appendicitis and had to go in for surgery. That was terrifying for oh so many reasons.
When they got in there, they discovered a perfectly pink healthy appendix. but since they had made the cut, they had to take it out. See, if they’d left it in, and then sewn me back up, and years later I suffered real appendicitis, and passed out from the pain, they wouldn’t operate because they’d see the scar and rule it out. Okay, so I’m recovering from this surgery and the stitches had almost all dissolved, and I’m still pretty sore, but I moved the wrong way or something, and the pain hit me. That same snapping, shot of breathtaking pain straight through from front to back on my right side. I was told that I had popped an adhesion (internal scar tissue as a result of surgery) and that it was likely to happen from time to time. So, I accepted that. I found that tight clothing around my middle, bending a certain way, breathing too deeply while sitting or bending over, having a full bladder, sleeping on my left side and a smattering of other things were more likely to cause this “scar pain”, and I accepted it and dealt with it and adapted.
By the time I was in grade nine, I had dark hairs at the corners of my lips. I decided they were because of my dark brown hair and accepted it. I also had dark hair on my arms, hands, knuckles, feet and toes. I accepted it as who I was and got on with life (not without teasing, but that’s another matter). I didn’t wear bikini’s like other teenaged girls, not for lack of a rockin’ body but because of modesty, and also because of my blossoming belly hair. Whatever. Tweezers became my friend in taking care of my lip hair, the rest I just hoped I could hide or that no one would notice.
I got my first period when I was 16. It started with what I thought was the stomach flu. What a surprise! I was actually excited in spite of the pain and the grossness. I had a sister who was struggling with infertility, and although I was a late bloomer, I was suddenly convinced I was fine. I didn’t get my next period for about four months, and then after that not again until I was 17. I was told that my periods would work themselves out, so I didn’t sweat it.
When I finished high school, I weighed 115lbs. Just a year later I was 125. Just a year after that when I moved to the city, I weighed 145 so I gained 35lbs in 2 years. My lifestyle in the city was such that I was able to maintain and even decrease my weight, I was riding my bike or walking everywhere and I barely ate any snacks or junk food. My periods still were erratic and unpredictable, averaging about four a year. Sometimes they were super easy, lasting only two or three days, sometimes having me laid up in bed sick to my stomach for over a week. I went to a doctor at university when I was 23, to see what was up, and without doing any sort of tests they put me on the Pill and said that would help my body sort everything out. At this point I was still experiencing random and sudden bouts of excruciating scar pain. The Pill wreaked havoc on my emotional and mental state and I could only tolerate it for three months before I took myself off of it. I could not justify the benefits of the Pill over the costs.
At 24, a friend of mine was diagnosed with Ovarian Cancer and after hearing about her missed periods and pain, I decided to go back to the doctor and investigate my own situation. I still believed that the pain in my side was adhesions as it only ever occurred on the right side and therefore didn’t mention it to the doctor. But at this time the doctor did do blood tests, and all of my hormone levels were within the normal range, though the levels of some like testosterone were high and some like estrogen were low. But since they were within normal there was nothing to worry about. She stuck me on a different version of the Pill and sent me on my way. After five months I took myself off of it, again the benefits by far did not outweigh the mental and emotional costs.
At 25 I was back to the same doctor with the same complaints and she did the same tests and came to the same conclusion. I bucked the Pill and she decided to put me on an internal contraceptive with the lowest dose of hormones available. I tried it for more than half a year, but it still messed me up, I was still hairy, and I just couldn’t justify it.
I moved back to my home town just a matter of months before turning 27. I weighed roughly 150lbs. My personal highest weight up until that point. Within half a year of living in my home town again I gained 20lbs. I went to a yoga class with one of my sisters-in-law and while doing one of the stretches I experienced the gunshot in my side, and the excruciating pain that had been such a constant in my life. She asked me what was wrong and I told her it was scar pain. She said that sounded weird, I had had my appendix out more than fifteen years prior. That got the gears in my head turning, but I wasn’t sure what to do about it. I tried to wrap my head around what was going on with me and after some time preparing myself for another non-answer and planning my refusal speech when presented with the Pill as my only option I made an appointment with my family doctor whom I had not seen for these concerns before. I laid out all of my symptoms, irregular or no periods, fluctuating weight and rapid weight gains, excessive hair, and this time I included the pain in my side. I explained exactly why I did not see the Pill as being a solution to my problems.
The doctor did blood tests, and scheduled me for both an external and internal ultrasound. It was just after my 28th birthday that the results of all these tests came back. I was given a diagnosis of Polycystic Ovarian Syndrome and I have a bicornuate (heart shaped) uterus. Between these two conditions, getting pregnant and carrying to term won’t exactly be easy for me. But when I got the diagnosis, I wasn’t in a position to be concerned about conceiving. What I was concerned about was my weight, and my body’s issues with insulin and sugar. Right away I cut out processed sugar and tried to eat healthier and over time more and more candy and chocolate and sweets snuck back into my diet.
I weighed 168lbs when I joined Weight Watchers the first time (prior to my diagnosis of PCOS). Over about a year I was able to lose about 23lbs and quit the program content with my success. I was off program for about a year and gained back all the weight I had lost PLUS 5 more pounds. I went back on Weight Watchers and reached my goal weight of 145lbs four months before turning 30. I was able to maintain that weight for about 9 months. Since then I have been struggling to gain control again, I’m now 31 (four months away from 32). I have changed my eating patterns again, opting for a low carb diet which has been shown to be beneficial to women with PCOS.
I still have the ovary pain surprise me and knock me off my feet with the same force as always. I still have unwanted hair, I still rarely get my periods, I still struggle with weight. None of this was new with my diagnosis and nothing changed for me when I got my diagnosis except that I now have a name and a reason for it all.
Both my fiancé and I are aware of the challenge we will have in starting a family. He has been nothing but accepting and understanding when it comes to all of this. He loves me and tells me I’m beautiful. He accepts me – hair, weight, everything. He’s actually the one who got me to reach out to the online community I mentioned at the beginning of this post.