Monday 29 July 2013

PCOS - how I overcame PCOS and won my battle!

I have opened up comments to everyone now! So please feel free to leave a comment. 

My story

When I was 17 (just under 20 years ago) - I was complaining to my doctors how AF (period) was never normal. I was yet to be regular and the answer I kept getting was - "you will grow into it". My Mum mentioned it to her gynaecologist who suspected that I may have a condition that was just starting to be discussed. I was sent off for blood tests and an ultrasound. I still remember that fateful day when the sonographer turned around and told me I had cysts on my ovary and would never have a child.

My world kind of crashed around me that day. I loved kids, wanted to be a mother and generally at the age of 17 - could not deal with it. I cried. And cried. And cried some more. I finally had the appointment with the gynaecologist who explained that I did have a fertility problem - but I was not infertile! It would just be harder for me, and I was at risk of a multiple pregnancy due to my condition releasing more eggs at the same time. I had what they called Poly-cystic Ovarian Syndrome. I had too much male hormones and little cysts on my ovary - which caused the lack of AF. She could help me by putting me on the pill and seeing how I went. Well Yee-Har! I finally starting to get periods and less facial hair! Six months after starting the pill, I decided to get off it. I ended up with more facial hair and a lack of periods. When I went back to her, she prescribed the pill and another drug. An anti-androgen drug they used to treat men with testicular cancer with (women with PCOS have high androgen hormones - a male hormone). My mum did not want me to go on this drug - and when we said we were not happy things got nasty. I was told I would end up with cervical cancer if I did not take the drug - and she wrote a letter saying it as well. Well what do you do with that? Get a second opinion. There was a great IVF doctor (remember this was the 90s, and fertility medicine was still being pioneered) that a family member had used. I went and saw him, and lo and behold he had just started to work in the field of PCOS (things happen!). He was shocked by the letter and that I had been told I would get cancer and that I had been prescribed the anti-androgen medication. He explained that I was only at risk of cancer, if I let me lining build up by not having a regular period. As long as I was on some sort of birth control, this would not be a problem, and the BC I was on had some anti-androgen properties that would help as well. He told me to come back when I wanted to get pregnant, and he would help me.

The next 13 years, I just accepted my PCOS. With comments from lose some weight and it will fix the problem (down to 58kg and still no AF mister!), I really did not look much more into it. The internet was now very active, and I decided to do a bit of detective work. I read a paper on PCOS that caught my eye - (please read it) - it changed my life!. It discussed the latest finding of PCOS - and what caught my eye was the first page with a title of "Common misconceptions about the polycystic ovary syndrome". Under this heading was  a comment on "You will get cancer". I stopped, read it again, and went - that was me. I finally looked at the author, did a few calls and discovered that it was indeed my saviour doctor - who was now a leading expert in the field. I made an appointment and started on my battle against PCOS.

PCOS - what we now know :
So back when I was first diagnosed they knew it was a syndrome - made up of a whole lot of different things - but they didn't know why. They also saw these cysts on the ovary. Well we know a lot more now.\

1. Most women who have PCOS is due to a hormone imbalance. This is caused by an underlying insulin resistance issue. Insulin is a hormone - and all hormones in your body are on a feedback loop. What that means is if one goes out of balance, the whole system is out of whack. Our cells are not receptive to insulin, so we have too much of that hormone in our blood, which puts us out of whack - and increases our male hormones, which leads to all the problems we find (loss of hair, hair growth, weight gain, fertility issues etc).

2. We don't have "cysts" on our ovary. What we have are unreleased follicles. A follicle is formed when we make eggs, but with PCOS we don't release the egg and we are left with a follicle. I have about 150 across both my ovaries. These cysts also make our ovaries larger - so yes I have big ovaries!

3. Size does not always matter. Women who are thin can have PCOS - but all women with PCOS are likely to put on weight. I have found as I have got older and my IR has got worse, my weight has been more difficult to control.

4. It is an evolutionary thing. Supposedly this evolved from evolution, when we were starved of food, so our body put in a mechanism to store energy for longer. Thanks evolution!

5. Signs you are insulin resistant are - skin tags (those loose flappy bits of  skin - I have them under my arm), and skin darkening (Acanthosis Nigricans) (again I have them under my arm, I could never understand why I always looked like I had a shadow under my arm - it was due to this)

6. You can get pregnant!

7. There are a few other causes - but the majority of women this is the major factor.

8. That depression you get? That is real and caused by our horrid hormones!

9. PCOS is a redundant name.

10. You are at a higher risk of heart disease, diabetes and a variety of other fun stuff. But if you get your IR under control you reduce your risk. You are also at a higher risk of gestational diabetes.

PCOS - how to help:

1. DIET - why is this so important? Well it is all to do with IR. In people with IR our insulin levels raise and stay high, while in normal people it will fall back to normal. Simple diet changes and exercise can get you approximating a nearly normal IR curve. The best diet? The low GI diet. The best book to help you understand it : The New Glucose Revolution.

2. METFORMIN - why is this drug so well used? It is a diabetic drug, used to treat diabetes before people inject themselves with insulin. Something in metformin helps reduce your IR. They don't know what part of the drug it is (it's like hitting a nail with a sledgehammer) but it works. Ask for the slow release (XR version) as it is much gentler on the tummy. You also want to be on it for when you are trying to conceive in the first trimester, as it helps regulate your hormones and prevent a miscarriage.

3. GOLF BALLING/OVARIAN DRILLING - this is something I had done, after the top two got my IR down to near normal levels (yay!) but I still had irregular AF and very painful periods. I was sure I had endo (but thankfully I don't!). This surgery came around as they use to first treat women with PCOS but slicing off the "cysts" of the ovary - it was called a wedge resection. Most of the time they actually killed the ovary - but in a small amount of women, this procedure got their ovary to heal and start working again. Ovarian Drilling was a modified version of this, where they drill holes into your ovary to try and get them to kick start. It is great if you are having problems conceiving, as you are very fertile after the procedure, but it only lasts about 3 years. There are risks - if your doctor doesn't know what they are doing they can kill your ovary. It was a hard choice for me to make but I went with it. He also did a D&C - and found out why I wasn't getting AF on my own. My lining was FULL of hormones which was interfering in my cycles. Within about 6 months of my surgery I was getting a semi-regular AF (at least one every 4-6 weeks!). This procedure is rarely done these days!

4. DETOX DIET - I swear by this. The best way I can explain our fertility is that our bodies are under so much pressure. When we feed it bad food, our digestive system is under stress, and our entire system is focussed on dealing with that. The system that gets the least attention is our reproductive system. PCOS bodies love good food and exercise. If you are having problems think about a detox to get rid of all those bad hormones and kick starting your reproductive system.

5. MISCARRIAGES - are real and happen at a much higher rate when you have PCOS. PCOS related miscarriages seem to be due to the hormonal imbalances at the end of your period. High hormones cause a spontaneous loss - but metformin stops this effectively. My loss was unlikely to be due to my PCOS due to it being much further in the pregnancy.

6. FERTILITY TREATMENTS - can be as simple as clomid, or as intense as IVF - but a lot of the time clomid and metformin get PCOS women pregnant and keep it that way.

7. IT IS NOT A LIFE SENTENCE!! I have met women who have cried their life is over due to PCOS. It isn't - it just may not be as easy :)

I have come such a long way from just treating it with the pill. I have not been on the pill since I was 30, I have regular AF, and two pregnancies! I never had gestational diabetes, and I am hoping to have more children born healthy. I have never been obese, though at times a little heavier than I like. I understand my moods - caused by my hormones, and I have chosen to try and treat the underlying cause (IR) rather than the symptoms (by using the pill).

Disclaimer - I am not a medical doctor, please consult your doctor for all concerns!

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