Monday, January 28, 2008

What does it mean to have PCOS?

If you have PCOS, you might have some or all of the following signs and symptoms

* 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 gain 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

To me, I can summarise the impact of these symptoms very simply. They affect
1) How I look- if you look at the list, there is nothing which makes you feel more attractive. Anything which is related to appearance contributed to me looking more manly and uglier. Thin hair, hairy face makes you feel more like HIM. Being apple shaped means any weight put on makes one look terrible in clothes. Clothes simply don't fit well if you look permanently pregnant.
2) My chance of having a baby-unassisted: While my body refuses to slim down, my chance of having a baby is getting slimmer day by day. And if I do get pregnant, I am at a higher chance of miscarriage.
3) Increased chance of metabolic and cardiovascular problems- PCOS is essentially an endocrinologic problem related to insulin resistance. This increases my risk of diabetes and cardiovascular problems.
4) People may judge me:Yes, people may judge me based on how I look (fat= poor discipline?, acne= poor hygiene??). Employers may also judge me: fat = lazy, ill disciplined. PCOS? Uhh,, will she need time off when she wants to try for a baby?

Any woman with severe enough PCOS could tell you that PCOS would have impacted her in one way or another, and the impact was perhaps severe enough to cause loss of confidence or even relationship breakdown. While I listened to a talk on radio about over prescribing, I can't help but find that unfortunately, for women with PCOS, there is nothing out there which helps to control the problems as a whole. [28/12/11: Things have improved quite a lot in the 4 years since I last posted this, but it is still not easy to get prescriptions!]. Women may have to take multiple products which all only address the symptoms on the surface. When a fat ugly woman walk into a clinic and needs help, chances are she will be told to eat less and exercise more, since weight loss is supposed to help control the condition. [I speak from first hand experience, trying to get metformin or Xenical to help me shed some pounds]

It is time that PCOS is treated as a real condition, not just a cluster of symptoms affecting fat ugly and lazy women.

14 comments:

Anonymous said...

You described just how I feel. It's terrible to not feel feminine when you are a female. Every girl should be able to feel like she is actually a girl. Don't even get me started on hair growth! My doctor always says it's not the big of a deal but she isn't the one who has to go out in the world the way I do. Women with PCOS are probably some of the most disciplined there are when it comes to eating and exercise but people just think all fat people are in denial! Shows where heavy people just stuff there face don't help either. We need shows that portray PCOS! I understand how you feel and thanks for posting. Women without PCOS don't know how luck they are!!

Anonymous said...

I just found out a year ago that I have PCOS. People, especially the men can never relate to this at all. They look at an over weight woman and don't see the real person on the inside... People can be so judgemental and this is something that I just don't go around and tell. They would never understand. My niece and my great niece also have PCOS. It is what it is. I take two different kinds of meds twice a day for the rest of my life. Until, men and women have walked a mile in my shoes they have no right to judge me...

Woman said...

Hi both, thanks for leaving a comments here.

I know how it feels like. I tried to speak to my doctor about my concerns of hair growth, but she told me "you look fine to me, many women have more hair (on their face)". That didn't help of course. While it wasn't bad by her standard, it was a noticeable change for me, and people around me!

Losing weight if you have PCOS is a totally different story!

Hmmm... I find that men don't get it, but women can be worse. Just look at the long thread of comments left by people on my post here: http://thiefofwomanhood.blogspot.com/2008/02/who-are-celebrities-with-pcos.html

However, don't be too bother by them! We are who we are! Good luck to you both. I am trying a new diet, and it is the first time something seems to work for me!

Anonymous said...

I found out I had PCOS six months ago and last week I was hospitilized because I would not stop bleeding heavily. I periods went from non existing to real heavy and longer than week. I ended up getting a blood transfusion 6 units of blood and 1 plasma. The doctor that helped me acted like I was a waist of time that I could not get my act together meaning my weight. Just the way he talked and looked at me made me want to scream its not my fault my body doesn't respond the way it should. I hope someone out there can figure out how to help woman with PCOS. signs Lost in the PCOS world.

Anonymous said...

I found out i had PCOS 8 yrs ago, about 1 yr after my daughter was born we wanted another kid. We have three now. But i have facial hair, i weighed 184 wnen i gave birth to my last child 8 yrs ago. I lost some weight just in the last 8 months, i weigh 281 and it took me forever to do. I eat healthy, exercise and still hard. I hear you girls out there and all i do is cry when i look at myself and think why do women have to wax their face or chin? Men are suppose to shave not us girls. I hate looking at myself but then again i love the person i am just not the way i look.

Ashlea said...

I'm 28 yrs old and suffer from pcos.
i'm 5'6 114lbs, very thin and in good shape. I started seeing chin hairs at 19yrs of age. I didn't think anything of it, as I still had a normal period. I did however, experience (and still do) acne. It was actually my facialist that suggested I might have PCOS. I went to the PCOS clinic here in the LA area and was diagnosed. I've learned that diet is everything. I've completely eliminated most carbs ,processed foods and sugar from my diet. I work out an hour every day. Although I'm extremely thin, my endo dr says exercise really helps regulate this issue. As far a the hair, I have it slightly on my navel,bikini line and chin. I found a plastic surgeon in Santa Monica that works with a lot of pcos clients and provides incredibly affordable laser treatments. I get laser on my face, knuckles, underarm and navel every six week for about 150.00usd. I'm almost to my goal. Although I don't want any children, I was very sad to be diagnosed with this. The side effects are no joke. Glad this blog exists to help others. I've also learned that several women in my family suffered from this but never got it properly diagnosed.

Anonymous said...

I recently went to the doctors for absent periods my last period was 2 months ago and was asked to take a blood test nothing came of it except i was told my hormone levels were high and may have PCOS i am now being asked to do a scan.. im very nervous im 21 and have always looked to have kids if i do have PCOS is this whats going to happen to me am i not going to be able to conceive normally? can someone tell me how this is going to effect my life will i be at the doctors regularly?

nygurl said...

The weight doesnt" just come off" with every person. My Endo and gyno said some may have a very hard time taking the weight off depending on the individual. We are not all the same! Some have other issues too like hypothyroidism. I worked out and ate a high protein diet and lost 20 lbs! I was so excited, but thats all i could lose. I hit a plateau and that was it. At any other time I tried to lise, it would always just be 10-20 lbs. Very frustrating. Not all of us will be able to lose lots of weight or be regular with our periods. So for someone to say you can do it and stop complaining we cant, it's just not that easy. No two people are alike! Niw on a positive note.... we should use this site to support each other, not bash each other. Shame on you Christine for talking down to us here like we're babies, or we're lazy! You have no idea what we do all day. SOME of us have a handicapped child at home to take care of, or no money or medical insurance to pay for treatment. Let us discuss our own situations and knowledge - not compare and judge.

nygurl said...

There are ways to help you conceive children and to keep your pregnancy. You're young and have that on your side. First thing is see an Endocrinologist. He will tell you what to do or if you need medication, :and then go see a good registered Dietician. He/she will give you a good idea of what your diet should consist of. I have 3 boys that made it to full term & my periods were not always regular.Walk a little even a half mile or more 3 days a week! That helped my periods get more regular, and vitamin D too. See if you are Vit D deficient. PCOS women usually are. Do research on Inositol. It seems to help me with my insulin resistance. I will try to post an article on here about it. Good luck ;)

nygurl said...

VERY interesting article!!!
Here is this week's Health Byte from the PCOSA.

Could Inositol Supplements Help Your PCOS?

New research is producing increased evidence that the B-vitamin inositol has special benefits for women with PCOS.

The European Journal of Endocrinology has just published an article showing that supplemental inositol reduces "oxidative stress" in women who have polycystic overian syndrome.

Oxidative stress is a form of inflammation and chronic versions of inflammation has been identified as a major cause of PCOS. It can damage every organ and cell in your body and make your symptoms worse. Areas that are particularly vulnerable to oxidative stress are ovaries, liver and pancreas.

Women with PCOS have higher levels of oxidative stress, partly the classic result of insulin resistance and partly due to poor diet and environmental factors such as chemical pollution.

In the latest study, 26 women with PCOS were given 1,200 mg of inositol for 12 weeks. The women experienced reduced insulin resistance, lower testosterone and reduced oxidative stress.

Inositol has also been shown to improve PCOS symptoms like skin problems, such as acne, and unwanted hair growth (hirsutism). It can also improve mood. Inositol is quite safe. You would have to take a huge amount - about 12,000 milligrams per day - before any discomfort might be felt.

Several previous studies have suggested that women with PCOS do not metabolize and utilize inositol the same way as females without the condition. That could perhaps explain why inositol supplementation has had such promising results with those suffering from polycystic ovarian syndrome.
Sincerely,

Christine DeZarn
Polycystic Ovarian Syndrome Association, Inc. (PCOSA)
Here`s the link to the website I get my information...you can sign up for newsletters, this has helped me tremendously!--

http://www.pcosupport.org/

Anonymous said...

Not being nose but i have pcos too i was just wondering whar meds you take

Woman said...

Had not been anything for a long time, was only offered oc.

Was on metformin briefly before I fell off the cliff a few months ago. I found that helped.

Anonymous said...

I found out that I have PCOS in 2009. My dr, a female, noticed the excessive hair on my neck. I was kind of embarrassed but when she explained why she asked it made more sense. I looked it up online for more information. Apparently, I also have insulin resistance (sp?). Sure, I didn't eat like I was supposed to and wasn't doing any kind of exercise. My dr. put me on metformin for the insulin resistance. It has helped with regulating the cycle (which was nice for a change; not as heavy either). I don't care about the difficulties in having kids because I don't want them. I started losing weight in January 2011 and going to the gym in August 2011. Since Jan. 2011, I have lost ~27 lbs. I am now within 15 lbs of being within the "normal" weight range and 23 lbs. to my goal weight. I don't know what kind of people you are hanging around that make you feel bad about your weight. My friends know that I want to lose weight and are glad that I am doing something to reach my goal. Of course, there are only a handful of people that know that I have PCOS. Yes, my diet is still not perfect but it is better than it used to be. I don't care if people think I stuff my face with food. I like food but I am also a picky eater.

Anonymous said...

i'm 17,i've been suspecting some kinda hormonal imbalance ever since,well i've hit puberty,my weight fluctulates,my hair is thin as fuck,i'm a hairy beast,i get body hair since i'm middle eastern,but not to my extent,because my sisters aren't as hairy as i am,my periods are too irregular,i put on weight really quickly & can't lose it easily.but i never understood,until last month i read up about it,i knew Jillian Micheals had it,so when i came across it,it seemed to fit everything happening to me,even though all these years i kept telling my mom something was wrong,but she assured me it was normal,but i knew it wasn't,so i got an ultrasound this morning,turns out my ovary is abnormally enlarged,it's 4.5 cm,radiologist asked me about excessive body hair,i told him i had it,he told the biggest possibility is that i'm suffering from PCOS,but they won't be sure till i get a blood test,i'm pretty sure this is the issue.this makes your self esteem lower,you feel ugly as fuck,like a freak of nature,like you belong in cony island,i stopped swimming because of the body hair,because if i shave it grows back the next day.i don't have facial hair like a dude though,but i do have chin hair that whisker like.