Thursday, 10 October 2013

A Letter from A Reader: PCOS

I got a mail today from a reader I thought I would share with you because maybe some of the info could be helpful. The following letter was translated and adapted from Italian:

Hi Jessicka... how are you? I am really enjoying your blog. The other day I read your posts about autoimmunity (I've read them all but don't know too much about this topic). I do, however, have first hand experience with PCOS which I have been battling for quite a few years now. I had been managing it with the birth-control pill but also suffer from high cholesterol and therefore the pill can be dangerous because of its' association with thrombosis. Without the pill my ovaries are a complete mess! I have high levels of the wrong, male hormones and I lose breast tissue as well as other typical problems with PCOS. I have seen many doctors without any concrete results or advice. They always suggested the BCP. I decided to start my own research as to an alternative. I found out that there is a medicine called Metformin that is used to treat diabetes to control insulin levels in the blood which has had some results in controlling PCOS as well. Since starting this medicine I have seen some changes and thought I would let you know about it too.... maybe it could be some help? You could talk with your doctor about it. How are you treating your PCOS? Did you have problems conceiving Sera? I don't ovulate... I think it will be very difficult for me to conceive when I'm ready to have a family. It's been two years since I have stopped taking the pill and haven't seen any signs of ovulation. I'm not actively searching for a pregnancy but would be very happy if one were to happen. Kisses to you and little Sera... sharing this with someone else who can understand is always useful.

I checked with the author if I could share this mail with you because I think that a lot of what she says and the questions that she asks could be helpful for someone else in the same situation.


PCOS is a very distressing Syndrome because it's not life threatening or debilitating but it is very alienating. Although it won't kill you or make you too sick to function, for a woman of child-bearing age, a diagnosis of PCOS is still something hard to digest. It means that you may not ever be able to conceive children and that if you can you will probably have a hard time doing so. It means you might not feel or look as feminine as you'd like to. In my case, my PCOS manifests itself in severe acne on my chin, unwanted excessive hair growth, a small breast, and extremely painful periods... all things that don't scream attractiveness. You can also feel alienated because seeing how PCOS is relatively common, the people who suffer from it are often overlooked by the medical community and the syndrome can be brushed off as insignificant. Doctors don't seem to be serious about finding a solution to a PCOS problem. It's frustrating and unfair. On top of that, telling a woman she may not be able to have children and that she's full of testosterone and there's nothing she can do about it except take potentially dangerous hormones is damaging to morale and can lead to all kinds of psychological problems. Sharing the burden of living with PCOS is a great way to counteract this and I'm very glad you wrote.

I have heard of the use of Metformin in PCOS treatment before. It seems that a lot of women are having good results with the drug. There has been some research linking PCOS with diferent types of diabetes and a mis-processing of Insulin, so that ma be why Metformin is successful. I'm not by any means an expert on the subject and due to my other medical issues try to avoid any pharmaceuticals in general. I will make sure to mention it to my doc at my next appointment however and see what he thinks.

I guess you can say I am currently 'treating' my PCOS with diet and careful monitoring. It has only been 4 months since I stopped taking the BCP myself but so far I haven't had any of the my usual symptoms except for irregular cycles. The diet I'm following calls for the elimination of all carbohydrates and instead consumption of good sources of protein, fat and fresh vegetables. Eliminating the carbs also eliminated huge fluctuations in your insulin levels throughout the day, so perhaps it's working much in the same way as the Metformin. You can read more about the diet here. In your case, if you decide to undertake a diet like this one I would suggest a cholesterol test a month or two after starting to make sure that your cholesterol is under control.

I have had PCOS for as long as I've been an adult and was told, based on my hormone blood tests, that I would not be able to have children without hormone therapy and infertility treatments. I was sure I wanted a child but didn't want to become a science experiment so I didn't start the treatments. Instead I decided to start getting to know my body better. I did research on fertility and PCOS and then registered for a website to help me track my cycles and fertility. You say that you don't ovulate. Do you know that for sure? I thought I didn't ovulate either until I joined Fertility Friend and started tracking my body temperature every morning as well as other fertility signs. I also purchased ovulation strips on line and used them whenever I saw a fluctuation in my body temperature. They're much cheaper than the pharmacy or supermarket brands. I wasn't hoping for much after what the doctors had said, but one day in May the strip came back with 2 pink marks, claiming I was ovulating! I couldn't believe it because it had been over 70 days since my last period... but who was I to doubt? Sera was conceived that morning.

When she was born she was 60 days overdue--- hahahaha.... that's a side note.

PCOS can be tricky because it's unpredictable... In my case my cycle was super long but then one day an egg got through. It might be the case in yours as well. Or it's possible that you find a doc who gives you just the right meds for a while until an egg gets through. Or you change your diet and an egg gets through. Who knows? Doctors certainly don't and it's easier for them to tell you it's impossible.

My advise to you would be to start getting to know your body... I still use Fertility Friend to track my cycles and signs/symptoms even though I'm not hoping for another pregnancy. It makes me feel more in control of things and helps me to keep an eye on my PCOS. I'd also recommend changing your diet to one that helps with your PCOS symptoms by eliminating aggravating foods for me AIP/Paleo sems to work. There's no cure for PCOS but it can be kept under control.

All the best,

PS. Here's a nice little article that I also mentioned yesterday that might be of some help.

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