The Ten Percent

This is me...

I am One of The Ten Percent...

My name is Helene.

I have PCOS or Polycystic Ovarian Syndrome.

It is said that one in every ten women have PCO or Polycystic Ovaries and many live their lives without it having any impact at all, some perhaps un-aware they have the condition. For others, this is far from the case...

What differentiates PCO from PCOS are the symptoms that arise from having PCO, largely due to the extent of the hormonal unbalance which is believed to be hereditary. PCOS is exactly this - the name given to the collection of symptoms - the syndrome, which for sufferers can mean a debilitating condition and life long struggle.

My story...

I was originally 'told' (albeit somewhat casually) that I had PCO as a teenager. At the time I understood nothing of what this meant and what impact it would have on my life up until this current day. The statement was neither explained nor embellished upon and brushed under the carpet, as is largely the case with this condition across the NHS.

For the last 13 years (up until 2014) I suffered with severe digestive problems that affected my daily life, not to mention knocking my self-esteem for six. I was in and out of doctor's surgeries, had blood tests, stool samples, scans, food intolerance testing, had been hospitalised on several occasions, had a personal nutritionist and tried every detox and diet imaginable.

In my early twenties, after being hospitalised in California where I was studying at University at the time, further scans were taken. I mentioned that I had previously been told that I had polycystic ovaries and asked if that could be related to my digestive problems.

The nurse took another ultrasound of my pelvis and informed me that they had been wrong initially and that I did in fact, not have polycystic ovaries.

So, that was that. I believed the statement to be true and never put a thought to it again.

I continued to suffer with digestive issues for another 7 years, with no explanation as to what was causing it and no real interest from the NHS in helping me discover the answer, except to tell me you have 'IBS'.

IBS is a very generic term given to a collection of symptoms and is not a diagnosis. It is basically what the medical profession tell you when they don't know what is wrong with you. Consequently, due to the longevity of this battle with my stomach disorder, I entered periods of mild depression on several occasions.

In the Summer of 2013 I experienced symptoms worse than I ever had previously. I often suffered from severe bloating but from June 2013 I began to experience acute stomach distension, with my waste expanding by 5 and a half inches. To look at me, you would have thought I was six months pregnant. It occurred every time I consumed something and mattered little what it was, bloating after an apple or even a glass of water. At it's worst the distension was there when I went to sleep at night and remained until I awoke in the morning.

I was tested yet again for Crohns disease, Celiac disease and other inflammatory bowel diseases, all with negative readings.

My only respite came from a juice fast (consuming only homemade fruit and vegetable juices) followed by gradually re-introducing solid food, but still eating no more than one meal a day of solid food.

I am someone who is highly passionate about fitness, exercise and sport and eating this way left me with very little energy to train.

In August 2013 I was sent for further tests at a new hospital. It is still an NHS (national health service as opposed to private) hospital but my mother is a fan of it as she believes them to be thorough. I told them that I had already been tested for PCO and told that I did not have the condition but they insisted on doing further tests. The nurse at this hospital informed me that I DO have PCOS. She then began to explain that Polycystic ovaries do not always show up on an ultrasound and that just because they do not, it does not mean you do not have carry the gene or have the syndrome. So, it turns out my mother was correct about this hospital and I am very grateful for their thoroughness. I quizzed the nurse further about the relationship between Polycystic ovaries and my digestive problems. She told me that the medical profession still know very little about PCOS and that the causal factors associated with IBS for those with PCOS is still being researched. As of yet no solid conclusions had been made.

I love to acquire knowledge and am always researching one thing or another. I am obsessed with nutrition and fitness (undoubtedly because of my journey with PCOS) and like to know exactly what is going on in my body.

After 13 years of suffering I do not necessarily trust the reports of doctors as they could not give me an answer. As one doctor said to me, I "...know my body better than anyone else", and so I continually seek to provide my own answers.

After the tests in the UK the doctor told me I have a condition called 'Lower gut motility syndrome' and gave me more anti-spasmodic drugs. But these drugs were not a preventative measure and certainly not one I wanted to remain on for the rest of my life. And so, I was determined to delve deeper. To discover exactly what PCOS was and what the relationship was between PCOS and digestive disorder.

A simple paragraph in a fabulous book about PCOS not only shocked me but spurred me on to explore the relationship further...

"Constipation and digestive problems: Many women with PCOS have digestive problems, especially constipation and IBS...and this is currently being researched. It may be linked to the slightly lowered metabolic rate after a meal, which is common among women with PCOS, and slows digestion. Food takes longer to digest, or isn't digested efficiently, and this can lead to digestive problems."

Further research showed that the medical community had proffered a link between these two conditions as early as 2002! I could not believe that despite all the tests I had undergone over the years no-one had thought to suggest PCOS as a likely cause for my digestive problems. It is true that the link between the two still remains to be scientifically and categorically proven but a mere suggestion could have left me a damn sight more comfortable over the last 13 years. I would even go so far as to say that it could have changed my life.

Having said that, PCO is part of me. The journey I have been on with it has made me the person I am, given me the strength of character and the determination I have and that is something I would never wish to change. I don't believe in having regrets. Life is about the journey, how we deal with the experiences we encounter and what we learn from them. A woman with PCO will always have PCO (as she is thought to carry the PCO gene), but her life needn't be a struggle. And there are many coping strategies she can develop and lifestyle changes she can introduce that take her from a PCOS sufferer to a woman with PCO - leaving the Syndrome dormant.

This blog is exactly about that.

Rather than the sitting in the mindset I had during those 13 years of thinking 'why is this happening to me?', I am now choosing to take a positive outlook on the PCOS scenario.

This blog will document the lifestyle choices I make, adaptations to my diet, physical activity, household habits along with my journey with PCOS and how I attempt to reduce the symptoms that accompany PCO.

I will discuss my lifestyle changes, share my dietary dips, my successes and failures. And perhaps more interestingly, the difficulty of trying to balance my hormones naturally in the city of Dubai, my current home and one that is far from natural.

I have chosen to post publicly on this subject, not only as a kind of therapy for myself (writing a blog is something I enjoy but is also a very cathartic process) but in the hope that sharing it may help another/other women who are suffering with PCOS.

PCOS can feel debilitating, embarrassing and certainly overwhelming. Naturally there will be days when I struggle but it needn't be a daily struggle, the signs and symptoms can lessen and even disappear.

My family support me in every thing that I do and I am very lucky that I have friends who are equally supportive.

But it is difficult for those who don't have PCOS to be able to relate to it. Throughout the years I often worried that sometimes I was a downer on their relatively normal lives. And I'm not alone in feeling this...

"I tell them I've got PCOS and their eyes glaze over"

"[I've] tried to explain [my] condition to a friend, relative or co-worked and they've looked at [me] like [I'm] from another planet"

Recognition of the condition and diagnosis by doctors leading to the provision of patient information still has a long way to go. In writing this blog I hope I am contributing to create more awareness by telling everybody and perhaps nobody at the same time.

Having a support network is highly important when facing anything difficult or challenging. Now that you are reading my blog, I am part of your support network and you are part of mine.

I will try to blog regularly, sitting in my sweatpants and coffee in hand. So hopefully you will return to my page and read more of my discoveries and thoughts, but in the meantime...

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