My PCOS story: From teenage years to pregnancy
The main reason I ended up working in the health and fitness industry in the first place was because of my Polycystic Ovary Syndrome (PCOS). It’s thought that as many as 1 in 10 women suffer from PCOS, and symptoms can include one or more from a range of not-so-nice things to experience such as weight gain (especially around the mid-section), hirsutism (excess hair in places you don’t want it), male-pattern baldness (losing hair in places you do want it), hormonal imbalances, acne, lack of periods, difficulty conceiving, or ovarian cysts to name a few.
While it can never be cured, it can often be managed to the point where symptoms almost completely disappear; if not, entirely so. Some doctors dispute this and I’ve had friends and clients with PCOS despair over the advice they’ve been given. But I’m living proof that it can happen so I’m writing this in the hope that it will give any readers with PCOS hope of your own.
My PCOS story
I was incredibly lucky to have a GP who recognised that I had PCOS the first time I came to her with relevant symptoms at the age of 16; weight gain that wouldn’t shift, hirsutism, and acne. Subsequent tests would show ovarian cysts (which look like a string of pearls around the edge of an ovary), and elevated testosterone levels. As symptoms can vary so much from person to person, it can sometimes be misdiagnosed as something else.
At the time I was diagnosed, some GPs didn’t even believe PCOS existed which meant a lot of frustration for women who knew something wasn’t right but couldn’t get confirmation from the medical community. My doctor promptly put my on a contraceptive pill that would help bring some of my specific symptoms under control and referred me to an experienced endocrinologist (hormone specialist) who put me on a medication called spironolactone to help control my testosterone levels. My body responded well to it and she recommended lifestyle choices that I half-heartedly attempted but didn’t take too seriously.
When I was coming up to my 20’s PCOS felt like a huge black shadow cast over me. Although I was nowhere near ready to have kids at that point I distinctly remember shutting myself in my room one day and Googling the downsides of PCOS and potential pregnancy issues until I was left sobbing about the unfairness of the universe. Google can be a dangerous beast.
I could have stayed in a depressive funk in my room, but instead I chose to take charge of my health and my situation. I hate the word ‘sufferers’ when it comes to PCOS. Don’t get me wrong, having it absolutely sucks, but since that point I’ve never referred to myself as a PCOS sufferer as it somehow makes me feel like I’m defining myself by it.
For the first time in my life, I stopped relying on my medications and began to take exercise and nutrition seriously. Over the next decade, the combination of this along with the pill and spironolactone would more or less keep my symptoms in check. If my weight crept up for any reason (usually study or relationship-related stress, or just becoming complacent), the symptoms would return.
PCOS and pregnancy
When I was around 27, a GP (not my usual one) sat me down to do the obligatory check you apparently have to take every now and then when you get repeat prescriptions for the contraceptive pill. I think he was just gap-filling for time so I could get charged the full rate for the appointment as he asked me a bunch of random chit-chat questions about my health. But then he broke into: ‘You’re getting older and I see you have Polycystic Ovary Syndrome; you should really be having any children you want right now’.
I was left speechless. I couldn’t get out of that horrible fluorescent-lit office fast enough and away from that thoughtless GP I’d never met before. I’d barely been in my relationship for that long, I wasn’t married yet, he didn’t know my background, I wasn’t in the financial place I wanted to be before having kids – that was exactly the wrong thing to say to a woman with PCOS. Did he somehow think that doing the ‘tick-tock-tick-tock’ speech a la Bridget Jones’s Diary would propel me into having kids before I was ready? Needless to say I made a complaint to the doctor’s office.
Fast-track to the age of 31 and my life (and frame of mind) was in the right space for children. However, a niggly voice in the back of my head that sounded suspiciously like that GP made me freak out that having kids might never happen for me because I’d left it too late. My mind was already filled with thoughts of the potential stress IVF could have on my new marriage. I even had multiple conversations about it with the husband to mentally prep him for it if the situation arose. My other concern was whether the very drugs I’d been taking for more than a decade to keep my hormonal imbalance in check could have any affect on the developing baby.
As spironolactone can potentially affect a fetus and contraceptive pills prevent pregnancy from occurring, I stopped taking my medications and we used other methods of contraception until I was well past the threshold of when they should be out of my system according to my endocrinologist. Just before I stopped my medications my symptoms were under control enough that my dosage had been reduced to the most minimal amount of spironolactone you could take because it was no longer necessary. And then we just enjoyed life; ate good food, took a relaxing 6-week trip through Europe and I was in the best physical shape of my life from training with a competitive rowing squad. My PCOS symptoms were still at bay. At this point I should note that we never specifically tried to get pregnant, but within one month of deciding to stop using contraception, a test came up positive.
Throughout my pregnancy I lived in a semi-permanent state of fear that I was going to have a miscarriage, pre-eclampsia or gestational diabetes (thanks again to Google, the worst tool for a hypochondriac). My endocrinologist looked dubiously at me when I said I’d opted for a midwife over an obstetrician as she’d have preferred me to be closely monitored by someone who knew more about PCOS. I didn’t have a couple of thousand dollars lying around, and even if I did I still think I’d have chosen a midwife because of personal preference.
When I told my midwife I had PCOS, she said she knew vaguely about it and dismissed it as being essentially inconsequential. Because of the fears I’d had from my past (which were heightened by the words of my endocrinologist and that GP), this made me have less faith in my midwife – and unfairly so. I even made her let me get a repeat testing for gestational diabetes just to be on the safe side.
In the end the worst I experienced was low blood pressure and low iron levels. I have a beautiful, healthy 18-month-old daughter and PCOS appears to have had no impact on the pregnancy whatsoever.
The downside is that I had some extra weight leftover from the pregnancy that I haven’t been able to shift which has caused my PCOS symptoms to creep back. This has been partially due to a range of non-related postnatal health issues that meant I couldn’t exercise, my sleep and stress levels skyrocketing, and also the fact I’ve now been off my PCOS medications for almost three years. I’m still off my medications as I can’t take them while breastfeeding due to the way they affect hormones and the potential for them to transfer into breastmilk. However, now that I’m getting better sleep, I’m using yoga and meditation to manage my stress, and I have the capacity to focus on my nutrition and exercising regularly, my symptoms are beginning to disappear again.
What I know now
If you have Polycystic Ovary Syndrome, healthy lifestyle management is absolutely the key. Even if you have PCOS without a weight issue, eating healthy foods, stress relief and ensuring not to overtrain when exercising are just as important. Over the years I’ve worked with a number of clients with PCOS and have helped them figure out steps to take to help them get their PCOS under control. Being on the right medications for your particular type of PCOS can help point your body in the right direction, but I cannot recommend enough an holistic and sustainable long-term approach to exercise, nutrition, stress and anxiety management, sleep and mental/emotional wellness.
These things can’t be completely revamped and may take time to figure out what works for you as everyone is different. For me personally I feel PCOS is something I will constantly need to keep in check, but it’s not impossible to overcome. Try to ignore the ignorant comments. Try to ignore Google. Just focus on yourself and listening to your own body.
Image / NZ Real Health