The PCOS curse vs Me

pcos

I can’t remember the exact moment I was officially diagnosed with Polycystic Ovarian Syndrome. Mainly because it was blatantly obvious I had it long before any professional confirmed it. I think I had pretty much accepted I had it for years. I was displaying all the horrible symptoms and I felt like a proper freak, really ugly. Utterly hideous.

I don’t think there are many conditions that can entirely strip a woman of feeling feminine, of being a woman, but PCOS is definitely one of them. Nothing really works very well. Hormones, reproductive system, emotions, it can even lead to Diabetes. The realisation that I may never have a child of my own filled me with absolute horror and dread. It was something I had dreamt about since I was a little girl. I had always wanted to be a mummy. Having come from a very small family, I wanted to have at least three or four children. If anyone asked me what I wanted to do when I grew up I would immediately say “I am going to be a mummy”. That was my purpose, that was my goal in life.

Luckily for me, I would eventually fall pregnant. It wasn’t going to be a smooth ride though. Two and a half years of not not trying, if that makes sense. Two and a half years of just winging it. By that point I assumed I was infertile. It was deeply troubling  me but I didn’t want to let it show. I was quite young to be thinking about starting a family so it was kind of ‘lets cross that bridge when we get to it’. But I had this awful dread that I would never be able to have children, so I researched Polycystic Ovarian Syndrome and I had every single symptom. It was obvious. I was heartbroken. Would I ever have the family I dreamt of? Would I ever be able to hold my baby in my arms and say “you’re mine, I made you”?

It didn’t even cross my mind that I might be pregnant until the day my ex-husband said “Err… your boobs have grown a bit, maybe you should take a test?” I laughed, that’s impossible!  We’ve not used protection for two and a half years and I can’t even remember the last time I had a period, let alone ovulated. But decided to take a test anyway.

Unbelievably, it was very clearly positive. We were still living at my mum’s house at that point but I was too excited to care about the practicalities. I was going to have a baby! My dreams had come true. I was in a state of sheer euphoria. Like I had just taken the best acid in the world. I wandered down to the nearest high street in an absolute daze. A fug of happiness.

I had to have a dating scan, due to not having regular periods, so had absolutely no idea how far along I was. Turned out I was nine whole weeks! How had I missed so much already? I had a real little person growing inside me, little arms and legs, fingers and toes, and I had no idea. I was really worried as I’d been out drinking heavily at one point, social smoking, eating stuff I shouldn’t etc.. In fact, yes I remember now, I felt really drunk after only  a couple of drinks on a night out with a friend and wine tasted really odd. Horrible even. It hadn’t even crossed my mind that I could be growing a child in there!

The relief when the scan showed us a healthy baby was magnificent. Jumping around inside me, I was giggling away at my little monkey. I was going to be a mummy after all.

My pregnancy went very smoothly, I adored being pregnant. It suited me. Morning sickness and tiredness didn’t bother me. We found out at the 20 week scan that we were having a little boy. Charles, named after his paternal grandfather. My due date came and went, it was the heatwave of 2005 and I was thoroughly fed up and huge. I remember lying completely naked in my bedroom, window wide open and hugging a big bag of frozen peas, crying because I was unable to cool down.

I was booked in to be induced for 12 days after my due date. 12 long days past my due date… However, my waters broke the day before, but I had no contractions. Or I certainly couldn’t feel them. I had to go straight to hospital.

“Quick!” I was told

“Get in the car!”

“Alright, calm down, labour takes ages!” I replied.

And true to my words, 18 hours on the labour ward at Chelsea and Westminster hospital, a great deal of pushing, a tens machine, pain in my back like I’ve never felt in my life, followed by an epidural, followed by a vacuum, forceps, then whisked into theatre for an emergency c-section, Charles William was finally born. All 9lb 12oz of him. Apparently his big head had got stuck. My beautiful big headed boy 🙂 I was so in love. He really was a pretty baby.

Charles William 26th June 2005

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We had everything we needed at home.

I fed my baby.

And fed him..

And fed him…

And fed him. Boy he was hungry! Why was he so hungry? At weigh-ins, he wasn’t gaining any weight. What? How? I kept on feeding but he was still so hungry all the time, crying, like he was starving. What the hell? A couple of weeks later, his father suggested we try formula. But we had nothing, no bottles, no steriliser, nothing. The plan was to breastfeed, its the most natural and best thing for my baby. Why would I want to use a man made substance when I had everything I needed right here? But I wasn’t getting any sleep and little Charlie was getting weaker, so I reluctantly gave in. It didn’t make sense. Charlie necked his first bottle and he started sleeping more and crying much less. Had I been starving my poor baby?

A couple of years later we wanted to try again for another child.

We tried.

Nothing.

As usual, I wasn’t having periods so I wasn’t ovulating. That was the time I was officially diagnosed with PCOS. I was right all along I remember sitting in the waiting room at St Georges hospital crying my eyes out in that same waiting room I found myself in all those years later having just lost my baby.

We had various scans and I researched as much as I could. It was all I could think about. I became obsessed with taking my temperature every single morning to see if I was ovulating. It was pointless, I just wasn’t ovulating often enough, if at all. No amount of charting, temperature taking, and ovulation predictor kits could change that. But I kept going. Determined to find my ovulation day, over scrutinising symptoms.

Friends were falling pregnant at the drop of a hat. Some even told me they had just come off the pill and wham, pregnant. I was happy for them, of course, but devastated at the same time. Why not me? Pregnancies were everywhere yet, no matter how hard we tried, I was still not. I hated my body. I hated what it was putting me though. I asked my GP for Clomid, medication to increase ovulation, but they said no. I had had a successful pregnancy already. I became desperately unhappy but found solace in a conception support group. Those girls kept me strong, they understood what I was going through, we could compare notes. They helped me escape from the pregnancies and happiness around me, happiness that I needed so desperately.  I am still great friends with them now and they are still a huge support to me.

Eleven long and painful months after initially requesting help from the GP, I was given an appointment for an HSG (A hysterosalpingogram test). This is where they put a dye through the fallopian tubes to see if there are any blockages. It can sometimes even clear a tiny blockage. The Radiologist said to me his patients often come back to him saying that they became pregnant soon afterwards. I didn’t believe him. I wasn’t feeling terribly confident and actually felt annoyed that he would even try to get my hopes up.

However, lo and behold, a few weeks later after practically giving up hope….

I got that BFP (Big Fat Positive)! I was pregnant again!

That well known excitement kicked in again.

I had another fabulous pregnancy, blooming, extremely happy. But I was determined to have a natural birth this time. I was desperate for either a homebirth or a water birth. I kept being told no. That I was high risk, having had an emergency c-section previously, my scar could rupture. I read up on VBACs (Vaginal Birth After Caesarean) and all I could see were positive stories. I wrote to the Head of Midwifery at St Georges hospital, I was adamant I was having a water birth in their Midwife led suite. If they wouldn’t let me birth at home, I had to be in the pool. I wasted my time though because, after a routine exam, I was told that my baby was breech. I booked in for an elective c-section for the 18th March 2009.

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Jack Arthur was born three days early by c-section at 11:09 weighing a healthy 8lbs 5oz

Once again I was head over heels in love with this little screaming wrinkly boy. I cried tears of joy, he was an ugly looking little thing but I adored him. He was mine 🙂

Once again, I wanted to feed my baby myself. I was absolutely certain I’d do it right this time. No formula. I fed him and fed him and fed him. He was on me for near enough 22 hours a day, we co-slept because he needed feeding so much. Yet he was losing weight rapidly. What was wrong? His latch was perfect. I tried expressing using an electric pump. I sat there for such a long time. I think I reached an hour at one point and managed to produce about 3 mls. Three? It must be the pump. I tried a hand pump, nothing. I researched ways to increase milk flow and stumbled across a medication that increased mild production as a side effect. Domperidone. I armed myself with articles about the positive effects it had on breast feeding and went to see my GP.

“Feed more” she said.

“Excuse me?”

I am feeding as much as I possibly can, how can I feed more!? Are you going to prescribe me with more hours in the day or something? I went away in tears, feeling hopeless.

I tried a bit longer but Jack was so skinny and I just couldn’t do it to him anymore. We started using formula. He filled out and started putting weight on, and he slept!

I’d never heard of PCOS causing low milk supply, but I have since discovered that it can put the breaks on breast tissue development in puberty, which means that milk production would be very low. This new information went against everything I’d ever read about breastfeeding. It was a revelation, but also gave me huge guilt. PCOS was taking over me again. Taking away something that was so important to me.

What I had to remember, however, was that I was incredibly lucky. I had two beautiful children and that is what I focused on. A lot of PCOS sufferers are not so lucky. Miscarriage, for one, is very high with PCOS due to low progesterone in early pregnancy, and I hadn’t ever had one.

I was so grateful that miscarriage had passed me by. So far anyway.

Little did I know what was in store for me…

 

 

5 thoughts on “The PCOS curse vs Me

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  1. I think for us with Noah, the PCOS diagnosis was the beginning of a horrible downward spiral. I didn’t know it effected milk supply, which could explain issues we had with feeding Hettie!

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