Tales of a Fellow Cyster

My journey into PCOS (Polycystic Ovarian Syndrome for those new to the lingo) was hard and sudden. Growing up, I was always tiny, and up until I was 17, I weighed only 43kgs. I didn’t have an eating disorder – heck, I ate terribly, Maccas every day! – I guess I was just lucky in that respect.
I was always an active kid growing up, from a young age participating in a multitude of activities: tennis three nights a week, gymnastics, dancing, Scouts, Little Athletics, swimming almost every day… I did it all!

Once I got to year 12, I decided to change my horrible eating habits and switch to a healthier lifestyle and that’s when I noticed a lot of changes very quickly. Throughout my high school life, I always had a hairy upper lip, but that was easy enough to conceal by bleaching it each week. Also, my period was all over the place – it would go from once every 3 months to 18 months without getting it! And when I did get it, boy was it pure hell for the first 2-3 days. Then, the weight began to pile on quick and fast. Within a two year period, I had put on 20kgs! I had no idea what was going on! After visiting the doctors, they recommended I go on Levlen ED (the pill) to try and regulate my period and hopefully control this rapid weight gain.

Sure, the pill helped with minimising the awful period pain, but the weight kept piling on and by the time I was 24, I had doubled my weight from when I was 18 years old. I had stretch marks galore all over my hips and thighs, confidence was gone, I became extremely depressed and also described as having Chronic Fatigue. Facial hair was getting worse, and the pill was doing nothing with the pain, with me having to call in sick once a month for the first day of the cycle due to the pain.

After going to a different doctor to find out what was going on, he asked me to get an ultrasound done as well as my first ever blood test (I am a wuss with needles). Here it was confirmed that I had Polycystic Ovaries and they lit up like a Christmas tree – there were so many cysts!

During this time, I had to be rushed to hospital on three separate occasions due to ruptured cysts in my ovaries and let me tell you, the pain is excruciating when it happens. Pain ripples up from your abdomen, through to your chest and back down again. You can barely walk. Laying down does nothing. Painkillers barely dull the pain. It is a horrible feeling and one I do not wish on my worst enemy (well, maybe that one person back in high school….)

In 2015, I married the love of my life, my high school sweetheart, and before the wedding I amped up gym sessions, had a personal training session once a fortnight, and cut out all sugar and gluten from my diet – I managed to drop two dress sizes and felt amazing. I was still overweight but not as much. It was only recently I have come to realise that those could have been a godsend if I continued them but with life, there is no rest for the wicked and I overlooked this piece of information and went back to putting on weight and adding a few more stretch marks to the collection – hellooooooooo to my tummy, I have stretch marks only on my right hand side due to a chicken pox scar!

In March 2016, I invested a lot of money in seeing a fertility specialist to try and get the baby wagon rolling. Sure I was still on the pill but wanted an out from all the pain I was experiencing with these bursting cysts and hopefully get somewhere with finding out how best to achieve any weight loss to (hopefully) fall pregnant. This was also coming off of a sex session with my hubby where I was on top and all of a sudden had a sharp burst of pain and passed out – I had to be slapped awake!
My first session with the specialist cost around the $400 mark and I was with the specialist for about five minutes discussing my history and what I wanted, what medications I was taking before being sent off there and then to get a blood test done and book in the following day for an external and internal ultrasound – those are horrible.
Upon my return visit (another $300 or so dropped) I was literally with her for about four minutes where she informed me that the blood tests were inconclusive due to the hormones from the pill, and looking at my ultrasound I have Polycystic Ovaries – duh! Tell me something I didn’t already know! – she then proceeded to tell me that my symptoms sounded like I possibly had Endometriosis as well but there is no way to confirm that and I will never have kids! Wait, what?!

I was in shock from her last comment that I couldn’t even muster what to say next, such as ask how she came to that conclusion of me not being able to have kids! The only thing she said was if I wanted to have some surgery done to try and remove cysts it would be a minimum 2 year wait and wasn’t worth the wait and I had to lose weight. I left the clinic in a daze and broke down in tears as soon as I got in to my car. I didn’t move for almost an hour as I was too much of a mess to contemplate driving. Who in their right mind tells them they will never have kids, doesn’t offer an explanation and thinks it’s okay?! I went in to a really dark place then and to be honest, still am.

Since that awful day, I went back to the doctors to be asked to be taken off of Yasmin and to be put back on Levlen ED 1) price factor 2) no difference in weight. As she was a new doctor, she asked my family history and when she found out that my mothers side had a history of breast and cervical cancers and my biological fathers side a history of blood clots, she told me to stop the pill there and then as I was already a high risk without the pill and had no idea why no other doctor had asked these questions for the past five or six years of me taking the pill.

It has now been approx. six months since I stopped taking the pill, no major weight loss as of yet but did manage my first ever period two weeks ago! It was horrible, lasted 12 days, but so glad it happened! I began to work out also in January whilst on annual leave and in the space of 4 days dropped 5kgs – it was amazing! I was getting up, going for a Fat Burning Walk for 30-45 minutes each morning, doing some exercising such as lunges, push ups etc. and overall was eating healthier – no sugars, no gluten, I was doing so well! Thennnnn….. I went and broke my toe! I am now beginning to walk again once every few days so hopefully by this weekend I can kick start my plan of losing 35-40kgs and hopefully prove that lady wrong and can get pregnant!

I will document the best I can my journey to weight loss, fertility treatments – yes I am looking in to those – and general life of a fellow Cyster! As with the hormone imbalances, this will be a bumpy ride.