What is PCOS?

I realised this morning that there may be some readers of this blog who do not know what PCOS is - so for those who don't, or who are interested in finding out a bit more about PCOS  - here is some information for you.

 

Polycystic ovary syndrome is the name given to a condition in which women with polycystic ovaries also have one or more additional symptoms. It was first ‘discovered’ in 1935 by Doctors Stein and Leventhal, so for many years it was known as the Stein-Leventhal syndrome.

 

The term polycystic ovaries describes ovaries that contain many small cysts (about twice as many as in normal ovaries), usually no bigger than 8 millimetres each, located just below the surface of the ovaries. These cysts are egg-containing follicles that have not developed properly due to a number of hormonal abnormalities.

 

Polycystic ovaries (PCO) are very common, affecting around 20 per cent of women. Polycystic ovary syndrome (PCOS) is also very common, affecting 5–10 per cent of women.

Polycystic ovary syndrome (PCOS):

• affects millions of women in the UK and worldwide
• runs in families
• is one of the leading causes of fertility problems in women
• if not properly managed, can lead to additional health problems in later life
• can affect a woman’s appearance and self-esteem.

 

Although PCOS is treatable, it cannot be cured.

 

Help, Advice, Support.

I am the sort of person who likes to research and read about things. I try to find answers in books, on websites, in magazines.

When I was first diagnosed with PCOS the internet was not what it is today. However, I did and do use the internet an awful lot for support and advice.

When I was going through IVF (I'll get round to this!) I used forums all the time - to ask questions, to chat, and to generally have a sense of belonging.

I would like to recommend and suggest some places that I think could be useful to inferile couples, or indeed for anyone who wants to find out more about infertility.

http://createhealth.creatingforum.com/forum.htm
http://www.infertilitynetworkuk.com
http://www.fertilityfriends.co.uk
http://www.fertilityzone.co.uk
http://www.ivfworld.com/
http://www.acebabes.co.uk/
http://www.hertrust.org/
http://www.naturalcycle.org/

Treatments for PCOS

After finding out that I had PCOS (Poly-cystic Ovarian Syndrome) I naturally wanted to find out more. I was prescribed the mini pill, so that I would have a 'bleed' every month. Apparently this would stop the lining of the womb from becoming unhealthy, and would also prevent anymore cysts from forming. I was informed by the Gynaecologist that the best treatment would be a pill called Dianette -that also deals with the other symptoms of PCOS - such as Acne and excess hair. But as I did not suffer from these other symptoms, and because of a family history of blood clots, I was given the mini pill as an alternative.

Being given the pill to take at 15 had its own implications. I felt very self conscious when getting the prescription filled - what were they thinking? Did they think I was promiscuous? And when given a prescription for Antibiotics, the pharmacist would always tell me that I needed to be careful as the antibiotics would effect the reliability of the pill, this caused my mum and me on many occasions to jump in and declare to the world that I wasn't using the pill for that reason! On reflection, this probably brought more attention to the fact that I was taking the pill than if I had just walked away and smiled sweetly.

Anyway, on to the research. Sixteen years ago when I was first diagnosed with PCOS the internet wasn't as much of an on hand information providing machine as it is today. I therefore went to my library and bookshop and found a few books on the subject. I managed to find one book on PCOS itself - but all the other books were on infertility with a chapter or sometimes even just a paragraph on the subject. At this time, the syndrome was relatively unheard of and certainly not the talk of the town as it later became when celebs proclaimed left, right and centre that they had PCOS - Victoria Beckham, being the first one that springs to mind.

I remember reading about the symptoms of PCOS and thinking that it didn't really sound like me - Women with terrible acne, facial hair, lots of excess body hair, obesity. Okay I was overweight, and had a few spots, but I felt like what they were describing sounded horrific, I started to worry that all the described things would happen to me in time. I now realise that every woman is different, and presents in a very different way. I did have a little bit of what I would call 'un-natural' hair. Some on my tummy and a few singles hair on my breasts. I have had a cry about this as well in the past. Feeling unfeminine and embarrassed.

One benefit of finding out at such a young age, and I suppose my natural disposition, meant that I was and am still able to talk about PCOS, it's symptoms, and the fact that I had it / have it, quite openly with people. I have never felt particularly uncomfortable about explaining it to people. This helped me a great deal when I was still at school, and the girls talked about their 'time of the month'. One day, I remember turning round and saying that I didn't have that. From that day till this women's comment is always "you are so lucky". Trust me, I certainly didn't feel like it!!!

Appointment with the Gynaecologist.

The day arrived for my appointment with the Gynaecologist. I was so nervous. Not because of what they might say - but of the fact that I was fifteen, had never had any sort of sexual experience, and was going to see a male doctor who I knew in all possibilty would want to do a private examination. Actually, I don't think nervous even comes close.

Some of my fears were eased when I met the doctor - he reminded me of David Attenborough (the wildlife expert), not sure now why that should have put my mind at rest - but it did. Maybe it gave me something else to focus on.

The Dr did his examination - and then sat me down, and proceeded to hand me some leaflets on Poly Cystic Ovarian Syndrome. He told me that obviously I ws already aware that that was what I had and he wanted to explain the treatement options. Aware!? I most certainly wasn't. I think my jaw and my mum's must have hit the floor at the same time. What was he talking about? I think the Dr saw the confused look on our face and asked me in quite a calm manner "didn't you know". Apparently, the ultrasound scan that I had had a few weeks before had clearly shown that my ovaries were covered in small cysts - and the blood tests that they had done confirmed that not only did I have polycystic ovaries but also the syndrome (they can tell this form the hormone balance).

I think at the time, I didn't truly realise the enormity of what he was saying, but my Mum certainly did, and that night I heard her crying on the phone to my Aunt and Grandma.

The Dr told me that it was unlikely I would ever have a period, and that I would continue to get the pain, which was being caused by the small cysts forming each month. I was going to have to go on the pill so that I had a 'bleed' each month, otherwise I could develop further problems with the lining of my womb.

My mum explained to the Dr that she had had a thrombosis caused through a reaction to taking the pill, and therefore she was a bit worried about me taking it. The Dr said he would send me for more tests to check for blood clotting problems.

He also explained that as a result of having the poslycystic ovaries and complete amenorrhea (no periods) that I would be in contact with the gynaecology service for a long time to come, as if I ever wanted to start a family, I would need some help.

So all in the space of half an hour I had gone from believing my period would start any moment - to finding out that not only would I never have a period, but that I had to go on the pill and would never me able to conceive a baby naturally.

Well cheers Doc you know how to make a girl feel good about herself! Cue the tears......

Diagnosis - A long time coming!

So at the age of fifteen - I went to the Doctor to discuss my symptons. I described the pain that I felt in my lower abdomen on one side, and my concerns that I hadn't started my period, even though I had gone through puberty in all other ways.

The doctor - handed me a prescription for Gaviscon - and told me she thought I had trapped wind. I wasn't convinced, and neither was my Mum. It seemed ludicrous, but what did we know!

So like a good patient - I took my Gaviscon, and what a surprise it neither got rid of the pain, or started my Period for me! I know Gaviscon is good...but surely not that good...

My mum booked another appointment for the Doctor (needless to say not the same one). This time, the Doctor listened, and she agreed it was strange that I had the pain and hadn't started my period yet. She referred me for an ultrasound.

The day of the ultrasound arrived - I drank my 2 litres of water, arrived at the hospital absolutley bursting for the toilet. I was greeted with a room full of pregnant ladies, all waiting for their scans too. I remember, even at fifteen looking at them with a feeling that I wanted that to be me one day.

I had the ultrasound, the songrapher was silent throughout - no inkling of whether she found anything or not. It was then a further two weeks before I was able to go the doctor to get the results. I counted the days, and was praying that it would be good news.

The day of the doctors appointment arrived, I nervously went in with my mum. The doctor told me that the scan all looked fine - that the lining of the womb was thickening, and she thought that my period would probably start in the next week.

Now this may seem very weird to all those women who dread the time of the month - but I was so excited. I had just received confirmation, that I was indeed a woman!!!

But, there was more...she was referring me to the gynaecologists at the hospital. I would receive an appointment in the post.

Well this was a bit confusing, but I thought nothing of it and went home in my happy state to await my period. My mum even bought me some sanitary pads on the way home in anticipation.

This was to all be in vain as I was to find out a few weeks later.....

Where it all started.

When I was at primary school, I was the tallest girl in the class, and the most physically developed. My mum gave me all the appropriate talks on starting periods, and what to do etc. But to her suprise, I didn't start. From the age of 11 to 14 I found myself thinking about it more and more. Each tummy ache could signal the start of adulthood for me, but to no avail. My mum tried to hide her concern, but I could sense her suprise, when still at the age of fourteen, there was no sign. Sometimes, I would cry, as I felt like I was missing out on something. All the other girls in my class had started their period.

At the age of fifteen we started to have sex education lessons, and I remember one lesson in particular where we had the "Tampax" lady visit. The "Tampax" lady was coming to our school to give a talk to all 66 girls in the year. We congregated in the school gym, where we watched a presentation about our periods, what products to use, and the risks of Toxic shock syndrome. From her discussion, she assumed that everyone in the class had by now started their period. I felt like the lost sheep. Especially when we were all given a free sample of Tampax to take home.

At the end of the talk I plucked up the courage to go up to her - could she tell me why I hadn't started? From what I can remember, the lady was very nice, and explained to me how everyone starts at a different age - and that she was sure it would happen for me very soon.

I went home to my mum in tears. I remember telling her that I felt masculine, that I felt like I had a deep voice, maybe this was what was wrong with me. On reflection, this now seems ridiculous, but at the time, I truly meant it.

It also came to my mum's attention that I repeatedly complained of pain in my lower right side, and we both started to wonder whether this was connected in some way. At first my parent's thought that maybe it was the start of appendicitis - but it was too low down for this. So an appointment was booked for the Doctor - to go and discuss this and also my anxieties at not having started my period.

Who am I?

I am a 31 year old woman, married, with two children aged 1 and 3. Six years ago I never thought I would be typing that! Using this blog, I would like to be able to share with you my personal journey of infertility and IVF.

I discovered that I would need medical intervention to start a family at the age of fifteen, when I was first diagnosed with PCOS. From the age of fifteen to the present day I have read, listened and researched into many different areas surrounding infertility and related treatments. I hope that with my personal experience and my little bit of obtained knowledge, I may be able to offer other women (or men) some support.