Verity - sharing the truth about PCOS

Archive

"I'm finding it difficult to cope emotionally. I hate myself."

Wednesday, 19th January 2011

Laura shares her story

I'm a 21 year old who has been living with the effects of PCOS since before puberty. I've always had very thick dark hair due to my Indian -mixed descent, as do the entire side of my father's family, so I never thought much of my hairy arms and legs and I hardly noticed my thick sideburns and moustache growing up. However, in December 2002 I moved countries a couple of days after my 13th birthday, and started my period exactly a month afterwards. My periods occurred approx four times per year lasting 3-8 weeks at a time.

When I was about 14 a schoolmate had confided she also had irregular periods caused by harmful cysts on her ovaries which she had to have burned off every few months. I also stumbled upon some literature around the same time about PCOS and I found I had what seemed to be (only I didn't know it even then) PCOS hirsutism. I wasn't overweight, in fact, I've always been between a size 4-8, weigh approx 7-7 1/2 stones and am about 5' 2"- but I was extremely hairy, with hair EVERYWHERE. Not only did I have sideburns and a moustache, I had hair under my lower lip, breasts, back and entire torso, particularly below my navel. I even have hairs on the backs of my hand. I could cope with the hair on my arms, but the worse, aside from my facial hair, was the thick dark hair on my legs (with a single follicle sprouting two or more thick hairs, and innumerable ingrown hairs) and bum. Despite waxing you can still see every single hair follicle- which means I can't bare my legs even in very hot weather because I still look as though I need a shave.

In 2004 I went to my GP with concerns about my irregular periods. He tried to fob me off with pills to regulate my periods but my friend's tale of harmful cysts made me insist on having an ultrasound. I will never forget the black and white polka dot image I saw.  It's the best sense I could make of it then. I wasn't even told by the doctor at hand what this was or meant. I had to ask and was simply told they were cysts and then sent home. End of.

Three years later, 2007, I went for a sexual health test after ending my first relationship and had to book and rebook appointments every week for about a month because my period hadn't ended. The nurse thought this odd and asked why this was, which puzzled me because I assumed she had all my details since this was the sexual health department of my local surgery. I explained to her about my scan and the confirmed polycystic ovaries. She seemed surprised and said there was no record there. I was then prescribed Microgynon to regulate my periods and although I was over the moon with the weight gain (I'd put on at least half a stone,) I found they made me incredibly exhausted and I was given Yasmin.

Not long afterwards, I was prescribed Dianette after I consulted my GP about my skin, which was very oily with large pores and spots. I was directed to take a break after 6 months. I found that my skin looked great and I had started to put on weight since starting Yasmin and even more so on Dianette. I was ecstatic with the results since I am petite and had always been very skinny, even as a child I was 5' 2" and weighed almost 8 stones (the biggest I had ever been). Even so my GP insisted I should put on another half stone. I still think he must have been blind to suggest even more weight gain, regardless of what the BMI chart says.

I managed to lose all the weight and then some within a few months due to stress and irregular eating habits which led to my catching an intestinal virus which was rife at the time. After two days of being sick, family friends were asking me if I had become anorexic as I was painfully skinny. I took a break from the Dianette in an attempt to boost my body into gaining weight again but wasn't very successful.  My GP also refused to prescribe me Dianette since he said it wasn't entirely safe for a prolonged period.

I was given Yasmin again but wasn't happy with it so didn't take it for very long, it did nothing for my weight. I tried going to my GP for the Dianette but the GP refused, and deemed it dangerous. Now I wonder whether they are even aware of my PCOS, whether it's actually on record, or whether they just didn't care? At this point i wasn't aware that Dianette was a hormone altering pill and could reduce hair growth, I just knew it helped me gain weight and achieve clearer brighter skin. Still, no weight gain. Worse still, since contracting the virus my stomach became very delicate and my appetite would range from binge eating to having a single meal or a few small snacks a day; my stomach would close up if I missed a meal and I would become irritable, depressed and suffer from headaches and incredible back pains. This also caused me to suffer from increased and darker hair growth on my arms, back and breasts (much like anorexia sufferers) as a result of the extreme weight loss. I couldn't find clothes to fit, I now weighed 6 1/2 stones. I was used to wearing 12 yrs old jeans but even kids jeans didn't fit properly anymore. I felt worthless and unattractive, I stopped going out and needless to say, my relationship suffered and soon ended. I didn't want to live, I didn't understand my body and didn't seem to be able to control my symptoms, my weight, excessive hair, moods and all.

I started taking Dianette again in 2009 but again my GP refused to prescribe it for a prolonged period. I put the weight on but couldn't seem to keep it on. I also tried various hair removal methods; depilatory creams, shaving and waxing which all resulted in thicker darker regrowth. I didn't realise that the Dianette had altered my hormones and that ceasing to use them would result in thicker darker hair and by the beginning of 2010 I had sideburns shadows from where I've attempted to remove the hair by waxing.

I was bullied at college and stopped going in. My tutors realised I was deeply depressed and tried their best to stop me being kicked off my course. I've graduated with good grades but just missed my dream Uni because I couldn't face going in enough to get the best possible grades. Now I look even more like a man, especially with my athletic build, with no curves, no nothing. I've lost all my confidence, I'm angry and depressed all the time, and I've become anxious at the very thought of leaving the house. Sometimes I get dressed after hours of trying to build up my confidence to go out. I then feel the fear and anxiety take over. I get laughed at in public and stared at, people sometimes even make snide remarks which make me feel as though I'm responsible for my condition.

I was never actually diagnosed.  I'm still not sure whether my GPs recognise my PCOS hirsutism for what it is. They've never offered any information nor any help beyond tablets and i had to beg for them. My last few attempts to get help from my GP resulted in my being given Vaniqa for my facial and body hair, which I was told would give me spots if used on my face, so I didn't. I didn't want to chance adding to my facial hair problems. The supply lasted less than a week for just my legs and so I didn't go back for a repeat prescription. I wondered just how many tubes I'ld go through per week before seeing results, and how much it would cost me. The second visit resulted in my finally breaking down to my family doctor, who just looked at me and said it sounded like I was depressed. Of course, but who wouldn't be in my shoes, and with no help being offered I no longer knew where to turn. He told me he couldn't help or offer any advice beyond normal hair removal methods. He hasn't even referred me to a therapist. I know I'm depressed and I know what life is like for me. People view me as a freak. The fact I have naturally black, thick, curly hair apart from my PCOS hirsutism effects does not help matters.
 
After reading the stories and information here I've realised why I've had a year-round cold for the last 10 years if not more, despite growing up in a very hot climate. I'm easily bloated; constipated; I'm always tired, I can sleep for hours on end; I become depressed and can start crying for no apparent reason. I can't sleep at nights and don't want to face the world so I sleep all day and am awake all through the night. I seem to suffer from every symptom apart from obesity.

I suspect my sister has PCOS also but suffers only irregular periods and hair on her lower back. However, this is quite mild compared to my hirsutism. She refuses treatment for regulating her periods as she says she doesn't want kids till she's 30 but I doubt she has a faint idea what PCOS is or whether she even has it, since I didn't know either at the time. I cant believe how badly I'm affected, and that none of my various visits ever resulted in any constructive advice from my GPs on eating a better diet or living a better lifestyle.

I'm still only taking Dianette, except it doesn't help get rid of or stop the hair growth, it's only very slightly slower. I've been taking it for about 2 months now and my GP says it can take up to a year to work and I'm hoping I look at least normal when I do begin university. Otherwise I'm not sure I'ld be able to cope with the snickers and the stares and the constant feeling of wishing you were invisible. I'm hoping the shadows will fade and that I will need to go through hair removal processes far less. I've contacted a reputable beauty salon to enquire about electrolysis treatment and apparently there is no guarantee it would work or that the hair growth won't return.
 
I am desperately in need of advice but can't afford specialists or even electrolysis since I don't have the confidence to look for a job and my GPs don't seem bothered or willing to help. They told me there were no other options apart from Dianette or Vaniqa for reducing hair growth but I've found other drugs on this website which I will now enquire about. At least there may be hope yet. I've felt nothing but inferior and abnormal for the last 4 years of my life and I'm finding it difficult to cope emotionally. I hate myself.
 
I have no-one I can talk to about this as no-one seems to understand, least of all my GP. I genuinely can't imagine going on this way and have tried to end it, bar for my believe in God I would not have given up trying. I feel like crying at least once a day, even at my happiest. I dread the summer months as I have hair everywhere like I said, and attempts to remove it has resulted in worse hair growth.
 
Despite all this, Verity has given hope to me in knowing there are people who understand and who will not judge me, who will try to help and support me and I hope all PCOS sufferers discover this lifeline. I don't feel so alone, I know there are others and I'm not a freak and it's not all my fault.  Had I known, I could have helped with a better diet and lifestyle. Maybe I wouldn't have permanent shadows on my face, particularly my upper lip, from constant hair removal and from taking breaks from Dianette as suggested by my GPs. When one's symptoms are so visible it can be difficult to be able to deal with the problem peacefully, or to know what kind of effect a treatment may have on the symptom.

I would also love to be able to meet someone and have a family one day.