Mae May

[b]Living with PCOS - My Story[/b]

It was mid 2006, I was living in Sydney and I had been on the Deprovera shot for 18 months which meant I didn’t have a single period which was great.

At the end of the 18 months I had a mysterious bleed which I thought could be normal after not having a period for so long but when it lasted more than 4 weeks I became concerned.

I went and saw a GP who sent me to a specialist to have a checkup. She sent me for an ultra sound and the scans came back normal. She told me to stop having the Deprovera shot and said my body must be rejecting it and to go back onto a normal pill.

Something didn’t seem right. It started to become uncomfortable to have sex, I was constantly having to use the bathroom and I was having irregular cycles that were outside of my normal cycle. I had had problems previously but a change in the pill and I was all fixed. After speaking to a lady that worked with my mum she suggested my symptoms could be Endometriosis – I can’t remember what all my symptoms were but after a bit of research I thought she could be onto something so I went back to the same specialist armed with many questions and possibilities of what it might be.

The specialist told me I was too young to have Endometriosis and that it must be IBS (Irritable Bowel Syndrome) and gave me some meds and sent me on my way. I refused to take the medication because I knew that the diagnosis was incorrect.

In September 2006 I went and saw my family GP in Brisbane and told him my symptoms. As my boyfriend and I were moving back to Brisbane in the October he arranged an appointment with a new specialist for when we arrived.

By the time we moved my symptoms had gotten worse. I now couldn’t have sex without ending up in tears and being in mass amounts of pain.

My appointment with the new specialist went well, he prescribed me a stronger pill to suppress my ovaries so the pain would stop and he concluded I did have Endometriosis and that some had settled onto my bladder that was why I was using the bathroom constantly.

In November 2006 I had what was to be my last natural cycle.

Over the next year I was still unable to have sex due to pain and the fear of pain. I had crazy mood swings, I started to put a lot of weight on and developed depression. I had regular blood tests which all came back normal. And still no cycles. My doctor put me on Diaformin which I didn’t understand what they were for and they made me sick so I stopped taking them. It was at this point I gave up on my health and the doctor’s appointments. I guess I just hoped it would fix itself…

In September 2007 we got engaged and by February 2008 I had gained 32kgs (70lbs) and still had no periods. I didn’t want to be a fat bride so I started personal training. I started a 12 week personal training course. I completed 10 weeks and gained 6kgs (13lbs) which the personal trainer said was impossible so back to the doctor I went.

More blood tests were done and for the first time a slight abnormality came back – a possible for Insulin Resistance which lead to a possible PCOS diagnosis. My GP started me on Diaformin again and told me to stick it out. I googled PCOS but didn’t really understand it all so I just kept taking my tablets when I remembered and went on with planning my wedding.

22nd November 2008 was the happiest day of my life. I married my best friend. The one person who had stuck by me through all of the mood swings and the 35kgs (77lbs) I had stacked on.

Our honeymoon was in Vanuatu and it was great. I never look at the photos though because I am so disgusted with what I look like.

After our wedding we were straight into Christmas which was a great distraction because the Bridal Blues were quick to follow. Not only was my busy wedding planning and excitement all over I now had to start dealing with my health if I ever wanted to have a baby.

My symptoms weren’t changing. I had more blood tests and ultrasounds but nothing. My GP referred me to a Gynecologist / Endocrinologist. I remember calling her office and having to write a letter as to why I wanted her help. I had to send the letter and all of my test results to her office and if I was severe enough they would book me in but not to expect an appointment for a few months. It took only 2 days to get a phone call back from her office and a week before I was sitting in my appointment.

I remember her being skeptical about my symptoms and possible diagnosis and blaming it all on my obvious weight issue which must have been caused from being unhealthy and as she put it bluntly, being fat.

I remember walking out of her office in tears with a referral for more tests to see if infact my symptoms were truly from PCOS.

A couple of weeks later I was back in her waiting room, dreading to go back inside her office. I went in, armed with tissues but her attitude had changed. She told me I had Insulin Resistance and I did infact have PCOS and quite severely. She gave me a bunch of information and a script for Metformin. She sent me away for 6 months to see if I could try to lose some weight so my body could reset itself and she would be able to get me pregnant.

August 2009

6 months past and I didn’t lose any weight. In fact I put on a few kilos instead. I remember the tears streaming down my face when she told me I was too fat to have a baby. I refused to go back and see her. I couldn’t hear that again.

January 2010

On a Monday night about 8.30pm I was watching a movie with my husband. I got up to go to the toilet and to my horror I had started severely clotting and it wouldn’t stop. I rang an afterhours health line and the nurse told me to go to hospital. It was hours before a doctor called me in. He called a Gynecologist, she asked my history and if I have a Gynecologist I usually see. She told me to go home and book in to see her without even as much as a check up before I left the hospital.

I went to see my specialist on the Tuesday when she told me it was normal as I hadn’t had a cycle in so long my body had to shed my uterus lining. She sent me for more tests to see how thick my lining was and if there was any other damage. My lining was still 14mm thick, should be approx. 6mm. My specialist prescribed me progesterone to take every month that would bring on a cycle to help stop the build up as I was still not ovulating and able to have a cycle on my own. I also had a diabetes test which came back positive. I was now a type 2 diabetic aswell.

I started working fly in fly out in Western Australia in March which would see me being away from my husband for 3 weeks at a time and only home for 1 week a month. During my first roster I had another massive bleed whilst in camp. There was no phone or internet service and it was the middle of the night. I knew no one and my husband and family were 5000kms away. I had never felt so alone. I basically slept on the toilet that night because every time I’d go back to bed I had another bleed.

I walked to another girls room and asked her to tell my boss I wouldn’t be at work. He came knocking on my door and demanded why I wasn’t going to be at work. He told me if it was that bad I had to go see the medic. Tears streaming down my face I went to the medic. I explained what was going on and he didn’t know what PCOS was and thought I was just having a normal cycle so what was the big deal? I rang my boss and told him I would be at work tomorrow. I apologised for crying as I could tell it made him uncomfortable. He told me it was fine but crying would not get me more sympathy. It was at that point I realised I was going to have an upward battle with my depression and work life if I didn’t get tougher. I wasn’t going to let PCOS beat me.

I started taking my Metformin on time, every time. I made sure I ate the way I was told to. I stopped being afraid of having sex. I stopped weighing myself and was having lots of fun at camp with great people. I went to my specialist on my weeks off, tears or not but I made sure I went and was booked in for a hysteroscopy a week before Christmas 2010.

I remember packing the night before I flew home for the operation and I was on the phone to my mum and she said she was so happy that I was me again. That’s when I realised I had kicked depression to the curb. It took a long time but I was me again. I credit that to a few people who pulled me out of my rut and working away where I couldn’t hide anymore.

At my follow up appointment my specialist told me that my hysteroscopy came back good which was great except it meant i was stuck in limbo still. On a positive note she told me I had lost 10kgs (22lbs) since I first saw her. She asked me what I was doing different. I said I was happy again and that it must be it. She agreed.

Skip forward now it’s 2012. I’m still on Metformin. I still take my progesterone. I’m still married to a wonderful, caring man. I have had a couple of hard times in the last year. An abnormal pap smear, a lot of very bad cycles from my progesterone and lots of people around me having babies. Now don’t get me wrong, I couldn’t be happier for them but it makes me think I have been through so much in the last 6 years and I am still no closer to having a baby.

My career has now taken over that drive, not that I have given up on motherhood. I have just found if I don’t change the focus, it sometimes gets too hard to breathe. So its work for me and being the best Aunty I can be.

24th May 2012 I was booked into hospital to have a lap band procedure. I have never been so overwhelmed then when I was being moved into the pre op room with tears streaming down my face.

Today is the 29th of June and 5 weeks since my surgery. I’m still in pain occassionally and I am back to work but 8kgs (17lbs) down I’m ready to start this new chapter in my life. The one that sees me becoming a mummy.

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