The medical world is still divided on whether to classify women who have no polycystic ovaries but have other symptoms as having PCOS, and whether women who have symptoms and polycystic ovaries but normal blood tests as meeting the criteria of PCOS!

It is also VERY important to know that, among doctor and scientists, there is disagreement between the American definition and the others who attended a meeting in Rotterdam (whose criteria is known as the Rotterdam criteria). Your doctor could be in either camp! The Rotterdam criteria is less as stringent as the American criteria. But as a patient, you should get help, and know how it could affect both your short and long term health (and your life! Your ability to have children!) while these people are debating about it. We just want wait till the debate is over for action. Therefore, if you have these signs and symptoms, talk to your doctor. If you think your doctor is unsympathetic and you are ignore, seek second, third or forth opinion. Many doctors, especially general practitioners do not know much about PCOS.

The general impression that many doctors have is it is something which affect FAT women. Yes, FAT, lazy women who should lose some weight and get their fertility back, and not depend on any medical help.

Watching out for PCOS

PCOS affects between 5-10% of women of reproductive age. However, the awareness of the condition is still very low among health care professionals and the general public.

As many of the signs are symptoms were deemed common, "cosmetic" or even embarrassing to discuss about, many women have never brought up these issues, whether with friends, families or their health care professionals.

It is important to know, and watch out for it, as PCOS-Polycystic Ovarian Syndrome or Polycystic Ovary Syndrome is associated with many serious long-term health outcomes (infertility, risk of heart and liver diseases, diabetes and possibly endometrial cancer), and could also inflict severe psychological impact as it slowly erode our "feminine identity".

If you have some of these signs and symptoms, it is important to discuss with your doctor about PCOS:
* Acne which persisted into adulthood
*Irregular or absent menses
* Infertility-difficulty conceiving, or repeated miscarriages
* Obesity, especially weight around the abdomen (apple shape)/rapid weight loss or inability to lose weight
* Excessive body or facial hair (hirsutism)-upper lips, near the "side burns", knuckles, tummy, etc
* Sugar cravings, dips of energy level/dizziness a few hours after a meal with carbohydrate stuff (Insulin resistance and possibly diabetes)
* Thinning of hair, the male pattern sort
* Velvety, hyperpigmented skin folds (acanthosis nigricans) usually behind the neck or at armpits/groin areas
* Appearance of tiny skin tags around neck and arm pits
*Diabetes

Women with PCOS also related these symptoms (which are not really recognised by your docs as a PCOS symptom!)
-chronic pelvic pain -some reported worsening during/around periods/ovulation
-mood swings-which is logical if you consider how hormonal imbalance could affect our mood!
-fatigue/tiredness (could be related to insulin problems)
-severe period pains

Other things which are commonly brought up by women with PCOS
-their mothers/sisters/aunts have "some problems" with their periods, or difficulty conceiving

If you see a doctor, you might go through these tests:
* Ultrasound scan-usually intravaginal, especially if you are overweight- this could show Multiple ovarian cysts (Polycystic ovaries have a "string of pearl appearance", and could be 2-5 times larger than healthy ovaries)
* Blood tests: which may detect hormone imbalances:
o Androgens (testosterone)
o Cortisol
o Estrogens
o FSH (follicle stimulating hormone)
o LH (luteinizing hormone)
o progesterone
o Prolactin.
* Tests for Insulin resistance and glucose intolerance- may require fasting and blood tests
* Assessment of the severity of your excess hair against a chart

It is very important to know that you may only have some, and not all of these symptoms! You don't have to wait until you have all the symptoms and tick all the boxes to get help. By that time, it is often too late, and there is more work and less time (if you are trying for kids) to reverse or minimise further damage.

If you have some of these signs and symptoms and planning to see a doctor, please read on to my post about seeing your doctor-what you must know (Will post as soon) I would like to share with you important information which I think you must know. These are from my own experience as a PCOS patient, through my research in PCOS with other PCOS patients and the medical literature, and with the insight of someone from the health care background. I sincerely hope the information will help you to get diagnosed and help sooner rather than later. Many PCOS patients run in circles before getting any diagnosis, and a diagnosis is no guarantee of any practical help.

Please also see the Video where Ashley (a PCOS patient) related her experience of the "mysterious diagnosis"

Please feel free to email me or leave a comment if you have any questions or need further help. I will try my best!

Petition for PCOS

Here is an extract of an online petition:
"Online Petition Is Looking To Bring Awareness To A Vital Women's Health "

What PCOS is, and what it does to women who have it, is complicated to explain as symptoms and severity of the syndrome can vary from person to person. Some of the classic symptoms are drastic weight gain, hair loss, depression, fatigue, thyroid problems, high cholesterol, panic attacks, headaches, dizzy spells, poor memory or muddled mind, sleeping disorders, constant thirst, extreme cravings, insulin resistance, cystic acne, cystic ovaries, menstrual cycles without ovulation, irregular cycles, severe mood swings, high testosterone levels, infertility problems, excess facial and body hair, not to mention a seven times greater risk than an average woman for four major health concerns affecting women in the United States today including heart disease, diabetes, endometrial cancer and stroke.

Now women who have spent their lives trying to come to terms with living with and understanding PCOS are asking for change, awareness and support by signing on to The PCOS Treatment and Awareness Petition which has recently been added to petitiononline.com
http://www.petitiononline.com/pcosweb1/petition.html

I strongly suggest that we all do our part in this. Unseen by most of us, "recognition" of a disease is fraught with political and economical agenda, with lobbyist, and $$$ from the pharma industry to support these activities. Unfortunately, there is no "pipeline" in sight for PCOS, and therefore, no money to be made directly from this condition yet. Does it now make sense that PCOS sufferers continue to be depicted as fat, lazy women who are infertile and turning into men?

As patients, our future lies in our own hands. Those of us who are able, and could, should try to find ways to join petitions, lobby for it. We are on our own, Cysters.

PCOS may be linked to liver problem

If you have PCOS, you may also be at increased risk for a liver disease called NAFLD (non-alcoholic fatty liver disease). NAFLD is also linked to insulin resistant and metabolic syndrome.

This is something that all women with PCOS has to take note of because:

1. Most medical professionals are still not aware of the link between PCOS and NAFLD, and therefore may not be looking out for it
2. Most of the time, NAFLD has little signs are symptoms! Ie, you may not be even aware of if even if you have it! Symptoms to look out for are fatigue, pain at the upper right side of teh abdominal or vague and widespread abdominal discomfort. As you are probably thinking, these symptoms are not specific at all, and are things that many women attribute to their PCOS.
3. You might even be prescribed drugs which are contraindicated (ie, should not be used) in NAFLD. Quite a number of treatment commonly used in PCOS has a contra-indication for more severe NAFLD!!!
4. NAFLD may progress to NASH---> cirrhosis---> liver damage & transplant

What is the implications of having NAFLD?
NAFLD could progress to NASH (non-alcoholic steatohepatitis), which is a more serious condition (NASH). In NASH, fat accumulation is associated with liver cell inflammation and different degrees of scarring. In severe NASH, there will lots of scar liver tissues, leading to cirrhosis. Cirrhosis occurs when the liver sustains substantial damage, and the liver cells are gradually replaced by scar tissue (see figure), which results in the inability of the liver to work properly. Some patients who develop cirrhosis may eventually require a liver transplant (surgery to remove the damaged liver and replace it with a “new” liver).The researchers of the mentioned study had recommended that all women with PCOS be screened for NAFLD.

What is the risk of having NAFLD if you have PCOS??
A study by University of California, SanDiego which was reported in 2005 in the Fertility and Sterility journal found that that 30% of the 73 PCOS patients in their study had high levels of an enzyme strongly linked NAFLD. This does not mean you have a 30% of having it too, as PCOS is a very heterogenous syndrome, and the women in the study may not share similar characteristics as you.

Please visit the ACG website for more information on NAFLD

Excellent video on PCOS -"mystery diagnosis"

If you have PCOS, or someone you know have PCOS, this is really a good video to watch.
Things might sound really really familiar...

I am glad Ashley did this!
Part 1 on You tube:


Part 2 on You-Tube


Part 3 oon You tube

PCOS information and support blog

I have PCOS.

I have been diagnosed with it for more than one year, and my symptoms were there since many years ago. I cant remember when it exactly started. Mine is a common experience for women for PCOS. Many were not diagnosed despite years of exhibiting the signs and symptoms of this syndrome.

I am lucky. I am lucky because of my background in healthcare. Lucky because I recognised my own symptoms when all the doctors around me did not. Lucky, because my friend, another healthcare professional also has it, and encouraged me to push for more investigations and the diagnosis. Lucky, because there are people around me who support me by telling me that many doctors dont know much about it, and I have got to push for it.































But until today-I have no treatment for it.

Nope. Nothing!

My scan more than one year ago showed HUGE ovaries. Classic string of pearls.

Nope, those photos were not my ovaries. I wished they were. Mine is much much worse. My little cysts are more gigantic! And that was more than one year ago. Since then I had TWO periods. And one was induced.

But I know it bothers lots of other women. Lots of women. Studies have shown that 5-9% of women has it. How many millions of people are we talking about here?

I hope that this blog will eventually contain information of use to other women with PCOS, and by openly sharing my experience, you know that you are not alone when you read this blog.

My wish.. not only women visit this. Men too!! For women with PCOS, their partners' understanding is CRUCIAL!!! If you are man reading this, I give you my hugs! (One big, hairly hug). Support your woman. She is a woman alright. Hairs, fats, acne and all. She is a woman deep down at heart, no matter what she looks like. Whether she bleeds every month or not. That PCOS thief is trying to steal away her womanhood, her identity, her life. Stay with her, help her to get it back or prevent it from slipping away.