Awareness

Creating awareness for Woman living with PCOS across South Africa.

Wednesday, February 9, 2011

Alarm Clocks- Because every morning should begin with a heart attack

Woman suffering from PCOS had to find out some time in their lives. My story begins with my first doctor’s appointment; I was told that I have a skew uterus and would have to try harder than most people when conceiving a child. To which I replied quite confidently that my boyfriend was in fact well endowed and could reach far inside past the “skew” part. My doctor laughed and I wasn’t sure if she was impressed or horrified that a 22 year old was so ignorant. Anyway walking out of that appointment I was a little heart sore that I had this problem and definitely wanted a second opinion. So the following year when my pap was due I found a gynea in the yellow pages and booked. On the “table” I asked him if my uterus was in fact skew and he gave me the best news I had heard all year, he told me that it was not skew in any way and that was the first time he had ever heard of that “term” he commented calling it a perfect little uterus. I had an internal scan and no abnormalities were found. I left that day with high hopes for my future babies J

Then a year ago I went to another OBGYN that was recommended to me (I have never been to the same gynea twice, I’m not certain why as yet but I have labelled my self as a gynea whore) and every thing seemed to be going well. I asked him that I heard (from a very reputable magazine actually) that there was a scan that doc’s could do to check how many eggs a woman has left so I asked him kindly to do this for me to which he replied that there was no such thing and once again I am left feeling like a bit of a tosser on the table.
He performed an internal scan and I noticed on the screen that there was a rather large amount of black dots on my ovaries. I glanced at it not thinking twice as my best friend has had a few cysts before and it was sorted out quite easily. He also mentioned that my uterus is enlarged. At this point I am starting to worry, a year ago I had a perfect little uterus now I have about 15 tiny black dots on my ovaries and an “enlarged” uterus… Then he sits me down at his desks and starts chatting about symptoms that I should have been experiencing (Cravings of Sugar, Acne, Facial Hair, Absent Periods and Weight Problems) Okay Okay I do crave chocolates every now and again but I mean what woman doesn’t?! Answer me that! As for the acne sure in my teen years I had a few pimples and being on the pill has cleared it all up. I have been on the pill for 6 years, I cant remember ever having problems with my period?! But then I think back and remember actually being happy the months that I had missed not knowing how truly wrong it was to be happy about that. And I am very few of the lucky ones that don’t have a weight problem. Anyway, he goes on to tell me about the LH HS FU hormone imbalances and that my ovaries do not release the egg etc and that the condition was called PCOS. Walking out of this doctor’s appointment I was more worried about the stupid enlarged uterus.

On returning to work I googled PCOS (WOW that was the worst thing I could ever have done), my biggest fear is not being able to have children and there it was in black and white “PCOS leading cause of infertility in woman”. Let’s just say my heart broke a little that day and has been broken ever since. I was perfect a year before and then out of no where like a kick in the teeth my life seems to have lost its purpose. I'd give anything to go back to my biggest problem being a skew uterus.

I had no one to talk to about this and every one of my family and friends said that I would be fine and that I will have a child one day, but it was easy for them to say this. I on the other hand was not so confident and researching more and more on PCOS only made it worse. I found support groups on facebook but nothing in South Africa and if 1 in 5 woman have this condition I thought why not start an organisation to create awareness in this country and hopefully support groups where we can share success stories, diets and be there through the disappointments because if you need a shoulder to cry on about this topic no one knows better than a fellow 1 in 5.

14 comments:

  1. Hello my fellow 1 in 5.

    I have been diagnosed with PCOS in 2007. But I have known something was wrong with my body since the age of 12 (now 29) - actually in 2004 by my dentist BUT she assumed that I knew and didn't say any thing...:'(

    I also see the need to raise awareness to Pcos. Not only among woman of all ages, but professionals as well. If I had known only half of what I know today, then I am 100% sure that I could have had my Pcos under control.

    I found that only a hand full of doctors have knowledge on this condition.
    I remember my first appointment with our GP. I was 14 at the time. He told me that I should go to our local clinic and ask to put me on the pill (which regulated the period, but worsened all the other symptoms) I then went to a government hospital. The doctor sent me for an ultra sound. When I returned with the photo he said something that gave me the idea that he was looking for a huge abnormal growth in my womb. And guess what meds he prescribed?? 336 diuretic tablets and told my to drink 12 a day....?!?!?!?!?! I KID YOU NOT!!
    Then I went to another GP that put me on Diane 35 and androcur or something. I gained 10kg in the 1st month and I couldn't even keep water down.
    I then went to the clinic again and asked for advice. The lady suggested that I go on a contraceptive injection. My weight yo-yo'ed a lot, my period became lighter (it used to be between 9 and 14days) and then stopped completely - YEAH!.... if I only knew. I then started getting these horrifying things on my legs every time I went for my "reload". After 4 years I stopped the contraceptive and waited for my period to return. It took 18 months and then made and appointment with a Gynecologist. Finally!! he told me what was wrong. And yes it was very tough on me. The sad part was that my medical aid I had then, didn't cover PCOS so they didn't want to pay for any treatment related to PCOS itself.

    I then started a quest to get "healed" which proved to be even more frustrating as I received more puzzled expressions from professionals then answers. I eventually asked my house doctor to do some research to see if we could get somewhere. I then got referred to a dietitian. More frustration!! At that point I gave up on medical/professional help.

    I now spend a lot of time doing research and experimenting with different herbal remedies and diets. But I am still in the area of trial and error. The most frustrating issue I have now is to get into an exercise routine. I get board out of my mind in a gym and the outdoors aren't safe. And then the others are finances or resources. Many "remedies" are not available in South Africa, so I have to import it.

    I hope that more would join in on the "fellow 1 in 5" support group.

    We all need help, support, comfort and guidance to be able to live normal lives in some sense.

    Regards and best wishes.

    Ang

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  2. hi
    i've been diagnosed with PCOS - there is a South African support group now on facebook called Leandrie Pcos, I'll search for more and let you know

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  3. Hey! My doctor also put me on androcur, I gained allot of weight!!!! I stopped it after a while and started feeling better. Then my endicrinologist put me on medication which made my immune system so weak I was constantly sick. I also stopped that after a while. There is to little knowledge about PCOS in SA!!! I also know about Leandri Pcos group. I'm living in Potchefstroom. Is there any woman you know of who lives close by? We need more support groups in SA!!!

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    1. Hey...I was just diagnosed with PCOS today...I feel as if my heart is breaking!Why should we have to struggle so much more with something all women already struggle with!!I cant lose weight and I have months on end without any periods...I travel a lot,but actually come from Potch-its still my home sometimes Bea H!!
      What do you guys do to lose weight?Weight is the main issue...

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  4. Hi I am from Cape Town and I am doing a documentary on PCOS should anyone be interested please let me know
    I am 23 and have never had my periods, am overweight cant loose the weight and my hair started getting thin, am growing a beard and my skin looks terreble.

    If interested contact me on thembelantongana@gmail.com

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  5. I was diagnosed with with PCOS on Monday I don't know how feel but having sleepless nights and just sad

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  6. Hey ladies I was recently diagnosed with PCOS at age 25 luckily I have a child (my oops at 21)but having PCOS I feel so alone no support my family just keeps saying that I must be positive it will come right. I'm broken emtionally physically in pain with cramps and some other side affects
    Xxwe need support kersty

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  7. Hey ladies I was recently diagnosed with PCOS at age 25 luckily I have a child (my oops at 21)but having PCOS I feel so alone no support my family just keeps saying that I must be positive it will come right. I'm broken emtionally physically in pain with cramps and some other side affects
    Xxwe need support kersty

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  8. Im 32 and was diagnosed years ago. I'm normal weight, perfect insulin, and all hormone tests came back within the normal range. Testosterone is on the high side of normal and my lh/fsh hormones are also in the normal range but ratios are out. Instead of 1:1 it is 3:1

    I'm searching for advice on how to get the LH lower without messing with my insulin. So many contradictions out there.

    Oh and I don't menstruate at all.

    I have a couple of friends who also have pcos and they all fell pregnant naturally. Usually within a year of trying but they menstruated. Irregularly, but still. So all hope is not lost.

    I'm just trying to get my periods and then I will take it from there.

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  9. Im 32 and was diagnosed years ago. I'm normal weight, perfect insulin, and all hormone tests came back within the normal range. Testosterone is on the high side of normal and my lh/fsh hormones are also in the normal range but ratios are out. Instead of 1:1 it is 3:1

    I'm searching for advice on how to get the LH lower without messing with my insulin. So many contradictions out there.

    Oh and I don't menstruate at all.

    I have a couple of friends who also have pcos and they all fell pregnant naturally. Usually within a year of trying but they menstruated. Irregularly, but still. So all hope is not lost.

    I'm just trying to get my periods and then I will take it from there.

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  10. Hey ladies,

    I haven't been diagnosed as yet because theres just a handful of Dr's in South Africa that have knowledge about this. I first had my period in 2007 at age 13 for about a good 5 days, honestly I was excited until I had to wait another 7months for it...Bummer!
    Well I had to talk to my mom teling her my periods didnt come this month(August)she said it was normal, but should always have pads as we dont know when they'll be back and you know the "do not play with boys" lecture? Yeah! Well I went to high school with just having 1 period a year and a pretty face.
    Grade 10 I had a boyfriend, God rest his soul.
    Ok back to the PCOS, the condom burst one afternoon and there was NO SIGN OF SPERM WHATSOEVER! I shaked the whole way back home thinking "WHY THE HELL DID YOU EVEN GO TO THIS GUYS PLACE?" But he was very supportive and all bought "the pill"and I was sorted until one day we experimented, yeah without! Dont ask me why I even agreed to this nonsense. After a week bought preg-tests,and the nerves! Oh well it came back negative. Later we broke up, because of some other reasons...
    Ok lets fast track>> to age 19.
    Not that I was trying for a kid, but I knew something was wrong with me and I started experimenting, AGAIN. I was with this guy for 3years at that time, I lived in Nelspruit but Im from Pretoria. I told the Dr that I last had my period 10mnths ago explaining from 2007. The Dr did tests and told me everything was normal and not to worry. He put me on Yaz and I was on my periods for the whole month. Went back, then changed to Mercilon, it was good to me, had a light 3 day period, took it for a year then I came back home. Age 21, still no normal period.

    I decided Im going to take Triphasil. Why? Because Mercilon was no longer prescribed to me and I was removed from the medical aid. 5Years with this guy, age 22. No positive tests, not even a pregnancy scare while everybody was complaining about menstrual cramps and having babies. Not that I dont want a child but happy it didnt happen, we broke up.
    Im 23 just had a new bf and Im scared to even bring this up. I recently lost my job and being home, the obssession of researching on PCOS is getting the better of me. I have, since my first Dr's visit suspected PCOS but couldn't confirm it or rather doubted it at times cause Dr said "All is fine my dear" :-(.

    Im scared of going to a GYN, am I crazy?
    Could it be something else other than PCOS?
    What are my chances of having a child?
    What symptoms/problems are you ladies experiencing with PCOS?
    Could anyone recommend a good Gyn around Pta?

    I even started researching on Artificial Insemination cause I know chances of having a child are very slim...there goes my big family of 5 boys��.

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  11. Hi there is there a solution for this pcos

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  12. Here is contact details 0814130327 where and how can we get the tea

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