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My Story
I was always of normal weight as a child, I had a normal appetite and no major health problems. At 11 I developed acne (first clue that my hormones were unbalanced) and at 12 my periods started. They were never regular, (second clue) coming about every two to three months and were always incredibly painful. However, doctors just told me that it was normal for periods to be irregular at first. Given the acne however, they should have tested me for PCOS. At 16 I visited a gynacologist due to my painful periods. She took some blood, told me that one of my hormone levels was abnormal (she was most likely referring to an atypical LH:FSH ratio which is a classic sign of PCOS) and then told me to come back when I wanted to conceive and that she would give me some pills. As a naive young woman that was fine with me. I never questioned her diagnosis because I assumed that she knew what she was doing. Unfortunately, I now know that many doctors are terribly uninformed about this illness.
At 18, I was put on Dianette to help with my period pains and my acne. I started gaining weight but was unaware of it really and just thought it was natural because I was underweight (8 stone). In fact, Dianette contains cyproterone acetate which has a cortisone like activity and; since cortisone is a steroid, Dianette can cause weight gain. I am aware of one women who gained nearly 6 stone in 2 months on this pill. It just does not suit many women so keep this in mind if your doctor tries to push it on you.
At 19 my father became very ill and around the same time I noticed increased hunger and an insatiable appetite. I also developed stomach problems so I ate a lot more because it took away my stomach pains. I later discovered that the insulin resistance that is associated with this medical condition had caused my increased appetite and eating too much for my stomach to cope with in turn caused my stomach problems. Recent research is finding that there is a relationship between insulin resistance and irritable bowel syndrome, so perhaps my stomach problems were also caused by insulin resistance. However it is impossible to know at this point if this is true of my case. By the time PCOS was identified I had gained 3 stone. I always had PCOS, but the stress of my father's ill health exacerbated my own illness so that I became very ill within a short period of time.
In December of 2000 I noiced hair on my arms (I never had any hair there before or if I did it was much lighter and not noticable) and on my stomach. I felt that the hair on my stomach was very strange so I mentioned it to my doctor who decided to test me for PCOS. Blood tests revealed my LH:FSH ratio was nearly 3:1. A healthy women with a regular cycle has an LH:FSH level of 1:1!
So there was the diagnosis: I had PCOS. I have since found out that I have non-traditional PCOS. Researchers have theorised that there are five types of PCOS and that is the type I have (this article describes the various types of PCOS). However, the only solution offered to me was the pill Dianette which as I have said causes weight gain so I wasn't eager to try it.
Determined to find help I went on the Internet to see if I could find something, anything of use to me. I found a fantastic site http://www.soulcysters.com/ which gave me all the information and support that I so desperately needed. Then I looked for an Irish doctor who knew about PCOS and after visiting three doctors (including an endocrenologist who was supposed to know all about this illness. He didn't and just gave me the classic 'lose weight and everything will be fine' speech) I finally found an excellent one. My trials took me to the Sims Clinic where I found Dr. David Walshe, an excellent gynacologist. He has prescribed Glucophage (active ingredient Metformin) to me and I am now noting decreased appetite and with time hope to have some semblance of a regular menstrual cycle, less hair and less acne. As for the weight loss that is a constant battle. I will never be cured, but hopefully I will be able to manage the symptoms of this awful syndrome.
UPDATE - MARCH 2002
It's been 15 months since my diagnosis and 11 since I got prescribed Glucophage. The weight has not fallen off me like I hoped it would. However, I am no longer starving all the time and have stopped gaining weight. I have managed to lose 11lbs which doesn't seem a lot to me but at least it's something when I consider that until I got prescribed Glucophage nothing I did prevented me from gaining weight. At least with Glucophage I don't have to worry about becoming morbidly obese or outgrowing my clothes. This weight is very difficult to shift because (i) PCOS has turned my body into a fat-storage rather than a fat-burning machine and (ii) my stomach problems have become worse and worse to the point where I sometimes am in agony with the pain. At times like these the only thing that helps me is eating. I cannot live with this level of pain anymore so am going to see a gastroentologist in April. I don't hold much hope though because it seems whatever I have got is unusual and from my experience with PCOS I know most doctors tend to be clueless about lots of illnesses especially illnesses which are considered rare.
I was amennorheic for 9 months but then I started taking vitex tincture and 14 days later I got a period. I have since visited a herbalist and am now taking a mixture of vitex, crampbark and yarrow. It seems to be working because I am finally getting periods again. I am certainly not a 28 day women, but at least my risk of endometrial cancer is a lot lower. I am hoping I will eventually have a regular cycle so that if and when I want to conceive it will be somewhat easier than if I had no cycle at all. Also, if I start having regular periods it's a sign that my hormones are becoming more balanced.
I still have problems with my skin. My acne is not severe but it is troubling. I am going to see a dermatologist this month to pursue my treatment options. I cannot escape my illness it seems. Everyday I am reminded of it. Sometimes I really, really hate PCOS. I watch my diet so carefully and it isn't enough. I have to exercise too and my relationship with food has changed completely. Before I got sick, food was just food. Now its my greatest friend and my greatest enemy.
Still, I can't let myself sink down into a lethargic, passive state. I have met so many wonderful women as a result of my PCOS and I have educated myself about it and illness in general. I can now try to get the word out about this disease so that no women should go undiagnosed and suffer like myself and so many others have. After all if PCOS can be caught in its early stages there is much that can be done to prevent it getting worse.
JANUARY 2003
A lot has changed since I last wrote here. The main change has been in my diet. Firstly, I just followed the Insulin Resistance Diet and lost 7lbs, but then at the end of September 2002 I completely eliminated sugar. It was incredibly difficult for the first week. I was really physiologically addicted to sugar and my withdrawl symptoms were intense, but once I made it through that first week it gave me the motivation to really embrace the low carb lifestyle. I read and read and joined a fanatastic support forum which helped tremendously.
To date I have lost 22lbs total and am at my lowest weight since my PCOS diagnosis. I am down two clothes sizes and can buy nice clothes again. I will go for blood tests in a week but I am sure my bloods will have improved. My skin is better, I have less hunger and cravings and also less ovarian pain.
My stomach problems are so much better now. I had a gastroscopy in May and was diagnosed as having acid reflux for which I took Nexium. It helped a bit but since I overhauled my diet the change has been immense. Over Christmas I indulged for a week and my stomach pains came back. I have since read that there may be something in carbohydrates that irritate the stomach . According to Diana Schwartzbean, acid reflux is common because the human body produces acid when one starts eating in anticipation of protein, and when a person eats a high carbohydrate diet the acid cannot be used for this purpose.
My periods are now every 40 to 45 days, which is the most regular I've ever been. I am also ovulating, though late in my cycle. Unfortunetly though I only get a cycle when I take vitex and other herbs.
I will update after my blood test results come through.
