PCOS · Stephanie Breedlove

‘PCOS Awareness’ by Stephanie Breedlove

At the young age of 20, my high school sweetheart and I, who were both fresh out of college, made the decision to get married. Our young minds were filled with anticipation of buying a home and starting a family. Both our parents had high hopes that we would be the ones to give them their very first grandchild and many more to go along with him or her.

A year later, we bought our very first home. We still didn’t have our baby, but we were told it was normal for it to take time. Our new home was located right by the library, the local park and the schools. I was excited and thought that since we were buying a house and being responsible that we would get our baby. I’m a spiritual person, so I thought that our efforts would be rewarded. The house was a two bedroom, little start up home with a nice back yard. I had high hopes that I would be able to walk around the town with my baby’s stroller and later on walk him or her to the park, library and even to school.

Fast forward to 2012, it had been four years since we started trying for a baby and there was no success and definitely not for the lack of trying. Our sexual life had become a chore and at this point, to me, became pointless. For the first time, we had health insurance so we both made appointments to see specialist.

Before going to the doctor, I had begun doing my own research. Keep in mind, it’s 2012 and even though infertility was becoming a big issue, Polycystic Ovarian Syndrome (PCOS), was still kind of a subject where the details were blurry. I did find a lot of women’s self-produced information about the matter though. I was physically sick after all the reading and trying to cope with the idea that this may be what I was dealing with. Sure enough, at my appointment with the OBGYN, my doctor said those three dreaded words.

“From what I can observe, you may be dealing with Polycystic Ovarian Syndrome. Have you heard of this?”

My heart sank; I could feel the tears well up in my eyes, but I remained calm on the outside. I nodded and she continued to explain that the only way to treat this was to put me on medications and told me I’d never get pregnant if I did not go through rounds of treatments. She started me out on birth control since my periods only came every few months. She also put me on progesterone and Metformin. I cringed at the idea since I’d never been the type of person to take medications for anything. I was also told I needed to lose weight, which I already knew and I had been trying without luck. It didn’t matter how well I ate or how much I worked out, the weight just kept coming back and in larger amounts.

My husband’s doctor visit was a little more positive. We went in and had to come back a week later with a sample. They analyzed it and said he was fine that he should be able to get someone pregnant. The doctor gave me a look that made me feel as if I was placing blame on my husband. I never did and I never had blamed my husband. He made the decision to see if there was anything he needed to do to help increase our chances. Since the doctor said he was fine, there was no advice or anything given to him about improving his overall sperm health.

It was good to know that my husband was fine, but it was sad that I was the one with the issues. I began taking my medications right away as directed and was horrified at the results in just a few days. The Metformin made me sick every day. I couldn’t keep food down and I had no energy to work out because of this. The progesterone made me even more hormonal than normal and I was lashing out at my husband a lot and it put a strain on our marriage. When it came time for my first period on birth control, I discovered it was the worst pain of my life! I had always had really mild periods ever since I was in the fifth grade. I thought maybe it was like this because it was the first time and it would get better. Six months later and it was still so painful.

I made up my mind at that time. I was not going to take any more medications. For six months, I was in pain, starving from not being able to eat anything without throwing up, tired even though I slept most of the day and losing my temper over every little thing. I was miserable and if this was the only way I’d have a baby, then it just wasn’t going to happen. I talked it over with my husband and he was okay with this. He understood that I didn’t want to feel this way and that it would greatly upset me if I were to become pregnant and it be a miserable experience.

I did notice that the medications did start to mask some of my symptoms such as thinning hair or hair in all the wrong places, but to me, that wasn’t enough to keep myself medicated any longer. My period never came back after going off birth control and to this day, I’ve yet to have one. I hadn’t lost any weight either, in fact, I think I gained twenty pounds. I slowly felt the real me come back as the medications wore off and I got some energy back. Sadly, because I had been eating so little, once I ate normal again, I gained even more weight. It was a horribly depressing time for me. I didn’t know what to do.

Instead of embracing my invisible illness that is PCOS, I went into denial. I convinced myself since the medications didn’t work that it must mean that it was not what was wrong with me. I didn’t think about being infertile and kept to myself. I lost myself in video games and online chatting to find that piece that was missing. My marriage suffered; my fur-babies felt neglected. I was emotionally depressed and physically addicted to my “social” life online. Eventually my husband and I separated since he was working many long hours and I was just lonely. We had both become pretty selfish and were emotionally abusive toward one another. Our once happy and loving marriage had become very toxic.

While we were separated, I moved back home with my brother and parents. I ate whatever my parents cooked. This put me from eating about four or five times per day as opposed to the two times a day I would eat before that. I began working out all the time with my dad and would go to work in the evenings. I slept a lot more since they didn’t want me on the computer all the time anymore. I respected their request, after all, it was their internet and they weren’t charging me rent. My addiction to online life had been replaced with working out. I was getting thinner, but still felt sick and drained all the time.

After a while, my husband and I decided to give our marriage another chance. I moved back with him in 2014 and things got better. We learned how to talk to one another and work on things rather than bottling them up or ignoring them. I continued to eat the way I did at my parents’ house. I did get a full-time job and couldn’t work out as much anymore. Slowly the weight came back on despite my new eating habits. I didn’t understand and punished myself for not having time to work out. I made up my mind to look into PCOS once again. At this time, there was a lot more information on PCOS. I began looking into things and reaching out on social media.

I had read an article about the link between casein, the protein in dairy and PCOS. I was terrified as I ate cheese on everything, had yogurt every morning and drank milk and creamer all the time. Then, a woman named Kym Campbell reached out to me on Twitter and told me about her program that would start in April of 2016. Her program confirmed that dairy is something that women with PCOS should be avoiding. This began my journey to a better me. I went on her program for the 30 days and found that it worked pretty well. I still felt sick each day and my period had not returned. I didn’t know what was going on but I continued using her advice. I ate more often so my body wouldn’t go into starvation mode and I was conscious about what I ate.

Somewhere along the way, I had developed a sensitivity to gluten, so I omitted all gluten. I felt a little better, but it still didn’t help me lose more weight. I then read that Paleo was the best diet for PCOS. I gave this a try. I lost some more weight and dropped all grains. I replaced my grains with vegetables and ate a lot of meat. I was looking kind of rough and felt sluggish. I remember my breaking point was while I was at work and I could barely keep my eyes opened while trying to run the machine I operate on. I knew this wasn’t working for me and I had to change.

I noticed that my body craved sweets all the time now but I was told to stay away from them; even fruit that were high on the glycemic index. I eventually caved in and felt guilty. I didn’t realize that getting rid of grains would make me feel so deprived. I found gluten free grains and began to feel better after adding them to my diet. I had omitted so many foods from my diet that I was down to just veggies, berries and meat. Food became boring to me and I realized that I was eating less and less. Now, for me, this is dangerous as I’ve struggled with eating disorders in the past. Before I met my husband, I had been anorexic and when we started dating, he made sure I ate. My appetite came back and I had become a binge eater. I didn’t know how to balance the way I ate until later on in my life. Since eating disorders can be triggered at any moment and can slowly take over your life, I had to be conscious of this.

My husband and I decided to watch some of those Netflix documentaries on food and health and one in particular really caught my attention. It showed how eating a plant based diet could reverse heart disease and diabetes. I gstarted to wonder if PCOS could be treated the same way. After all, the disease is a lot of different symptoms that work against the body to create this ultimate illness. Doctors have even said they aren’t sure what exactly causes this or how to cure it. I’ve made it my goal to find a way to cure this disease. As of today, it’s been about 85 days since living this way and I’ve already seen incredible results. I plan to keep going this way. My diabetes have gone away and my blood pressure is in the ideal range; not just good, but ideal!

Thank you for reading about my journey. We are not alone and we will overcome this. Getting awareness for PCOS to the public is the most important thing we can do to as a group of powerful women so that others won’t have to struggle the way we have in the future.

You can follow Stephanie on Twitter: @Shara_Elyse

 

 

PCOS · Sarah Miles

‘My PCOS story’ by Sarah Miles

I was officially diagnosed with PCOS in 2002, but in all honesty, I think I had been suffering with the symptoms of PCOS for several years beforehand. I had put on a lot of weight in a short space of time, and I had been having to pluck the hairs out of chin every day for at least a year before I was diagnosed.

In order to get a correct diagnosis, I had to have a series of tests done, including full blood tests, urine test, MRI scan and an internal Ultrasound scan (which was quite frankly yuck).  I was referred to see an Endocrinology Consultant at my local hospital, who told me the news that I had PCOS, and there wasn’t much to help me with the condition, just to try and manage my weight and when I wanted children, go back and see them and they would offer me some fertility help.

I felt very isolated, as I had never heard of anyone else with the condition and there was no information out there to help or advise me on how to manage the condition. I decided to try and find out more about the condition on my own, but when researching on the internet, I found a lot of the information and support networks were all American based. I then discovered Verity (the self-help group for UK women with PCOS) and without a shadow of a doubt, Verity saved me. I was at the point of feeling so alone, so isolated and feeling like I was the only person in the whole world with this condition.  I was able to get information about PCOS, what causes it, how to manage it, and just knowing I wasn’t alone helped to feel more able to cope with everything.

After having PCOS for over 10 years now, I still struggle every day with the symptoms and managing the symptoms. I also struggle with my self-confidence, which is mainly due to the effects of living with the symptoms of PCOS. The symptoms I mainly suffer with are excess facial hair, being overweight, bad skin, and losing hair. I do sometimes feel that having PCOS has robbed me of my femininity, especially when it comes to plucking the excess facial hair out of my chin – there is definitely nothing sexy or feminine about doing that every day.

We live in a world where people make assumptions about you from the way you look, and I do struggle with this as well. Yes, I am a larger lady, but I am not a fat pig who eats cream cakes all day – in fact nothing could be further from the truth – I have lost over 5 stone following the Slimming World plan, and I intend to keep going – to help myself manage not only my PCOS, but my self-confidence as well.

It has only been in the last few years that I have really started telling people about my PCOS, and feeling more comfortable talking about the condition, and knowing that I am not alone makes it all the more easier.

If you would like to find out more information about Verity and the work they do to help women with PCOS, have a look at their website www.verity-pcos.org.uk.

You can read more of Sarah’s writing on her blog: beautyaddict32@blogspot.com

Hattie Farley · PCOS

‘Living with PCOS’ by Hattie Farley

When I was fourteen years old, I started to realise something was different about my body. I started to notice the black hair that grew above my upper lip, my infrequent and heavy periods and the way my eyebrows, arm and leg hair was thick and black despite my hair itself being blonde. Most of these symptoms were passed off as typical ‘teenage girl troubles’ (even by my GP) and I didn’t see a reason to disagree. PCOS was not something that I was aware of throughout my teenage years, yet it is something that impacts my life as a woman every day.

So, what is PCOS?

PCOS (Polycystic ovary syndrome) is a metabolic disorder that affects 1 in 10 women in both the UK and USA. This metabolic disorder affects women’s hormones, leading to higher than normal levels of sex hormones (in particular testosterone) and insulin being produced. This disorder can trigger symptoms such as weight gain, fertility problems, period problems (irregular periods or no periods at all), excess hair growth (commonly male-pattern hair such as across the face and chest), acne, anxiety, weight gain and depression. Alongside this, women with PCOS may have at least twelve tiny cysts on their ovaries; made up of empty egg follicles. These symptoms commonly begin during late teenage years and early twenties.

Strangely enough, despite dealing with weight gain, irregular periods and anxiety for the majority of my life, I only started to question whether I had PCOS when I started to develop acne. I had struggled with heavy and irregular periods for so long, that I had stopped thinking of it as a problem and started to think of it as just another aspect of my life that I had to deal with every month. Yet, when I developed acne at twenty years old despite never having had it before, I started to question whether something was wrong.

At first, I passed it off as stress. I was in my final year at university. I was writing a 10,000 word dissertation and dealing with countless other deadlines and commitments, that I decided it was no surprise that my face was covered in angry, red spots. However, after four months they still showed no sign of leaving and I decided it was time to visit the GP.  On my first visit, my acne was brushed off as a side-effect from university related stress. I was prescribed with a cream and antibiotics and told to return in eight weeks if the acne hadn’t faded.

Nothing changed.

When I returned to the doctor’s eight weeks later, my GP started to ask me about my life style, my diet and my periods. As soon as I mentioned my irregular and heavy periods, she started to ask me about other aspects of my body that had been brushed off for my entire life. The thick black hair that covered my arms and upper lip. My fluctuating weight and my anxiety. It was then, that she bought up the word ‘PCOS’. She booked me in for a couple of blood tests, an external and internal ultrasound and reassured me that once I had a diagnosis, I could start making the necessary changes. I went home, and started to Google PCOS. To my dismay, I couldn’t find much information. It was then that I started to realise how, despite affecting one in ten women, PCOS is a massively unknown topic. Over the next few weeks, I underwent blood tests and had an uncomfortable internal ultrasound. It was then, that I was diagnosed with PCOS. I was told by my GP that there wasn’t much else she could do for me. She printed out some documents from Google and informed me that once I started trying to get pregnant I should return. I walked out of the surgery that day, feeling underwhelmed and overwhelmed at the same time.

I ordered several books (particularly those written by Colette Harris) on PCOS, after finding my Google searches largely unhelpful. These books have provided a large source of comfort for me, especially within these first six months of diagnosis. I started to educate myself on the types of food I should avoid and increased my daily exercise. Slowly and to my relief, my acne began to fade and I started to feel as though I had control of my body once again.

The cause of PCOS is still unknown. It is estimated that more than half of women who suffer from PCOS are undiagnosed. Perhaps, this is because even our GPs are not sure of exactly how to identify this syndrome. Perhaps, as women we are so used to health related issues being brushed off as ‘women’s problems’ that we start to believe it ourselves. Perhaps it is the name ‘Polycystic Ovary Syndrome’ that hides what PCOS is all about. The truth is that PCOS is not just about women’s ovaries; it is something that can affect every aspect of health for women – mentally and physically.

Some parts of PCOS are easier to manage than others. I can manage my excess hair growth; making sure I am booked in for regular waxing and threading appointments. I can pluck the black hairs on my chin that appear every morning when I wake up. I can apply the prescribed cream for my acne and the scars that follow them. I can manage my diet, making sure that I maintain a whole food diet, cutting down on processed foods in order to make sure my hormones are under control, consequently reducing the symptoms. Other parts of PCOS, are not so hard to manage. I have to deal with the fact that I may not be able to easily fall pregnant. I have to deal with sometimes not feeling as feminine as I would like.

As of yet, there is no cure for PCOS. We can read books on it, manage our diets, exercise, mentally learn to deal with it and ultimately – help to raise awareness. We need to normalise the concept of PCOS and educate our fellow women (and men) on recognising and dealing with the symptoms that come with this disorder.

September is PCOS awareness month. If you suffer from PCOS and would like to submit an article on your experience with PCOS then please email thefutureisfeminist@gmail.com.