Are you a Woman with PCOS?

PCOS or Polycystic Ovarian Syndrome (also called Stein-Leventhal Syndrome) is thought to be the #1 infertility disorder in the world. Affecting between 6-10% of all women around the globe regardless of racial background. PCOS is an endocrine disorder that can (so far) only be treated with medication and not cured.

I'm writing this article because I have PCOS and it took me 10 years to get a definitive diagnosis. The problem is that PCOS affects women in different ways. That's right no 2 women share the same PCOS symptoms and due to lack of education and press I've found that women aren't even aware that PCOS exists and that they should be tested. If your a woman reading this, the chances are, that even if you don't have PCOS, you know a woman close to you who does. In many cases this PCOS will go undiagnosed or misdiagnosed and this can lead to many more serious complications later in life!

A little personal history:

The first time I went to the doctor because of missed periods I was 18. The doctor informed me that some women's systems were "just that way," and sent my packing. At 18 I hadn't had a period in almost 5 months... I just turned 30, so we're talking about a relatively recent period in time.

A year later I got a chin hair. No big deal, all women have erratic hairs that get plucked, waxed, or otherwise removed! Besides my mother had a chin hair so I figured it was genetic. Embarrassingly enough, within three months I started getting 10 (yes I counted) very thick chest hairs!

Now before you all start to think I'm just super vain, PCOS is not just cosmetic (as I will get in to in a minute).

But I don't want to overlook the cosmetic symptoms it can cause. If your a woman who has PCOS you know how damaging it can be to self image to suddenly start to have these things happen. It's not just unsightly hair growth in odd places. PCOS can cause male pattern baldness, severe acne breakouts, and weight gain that can be almost impossible to lose!

When I turned 21 I discovered how sever some of the cosmetic symptoms could be. I had never had acne as a teenager. My face was devoid of scars that plagued some of my left over high school friends. That all changed literally within the span of a week. I woke up one morning and for no apparent reason my face had erupted during the night in acne cysts. Not just bumps but deep painful lumps under my skin. The breakout was so violent I thought I was having an allergic reaction perhaps to a food or laundry detergent. A trip to my doctor proved me wrong and the diagnosis was cystic acne. The patch that had started on one cheek, despite antibiotics and trying every acne treatment available, within a week had spread to my whole face. It took 6 months for the breakout to clear up. There was little reason to celebrate when my face finally stopped erupting -the damage had been done and I was permanently scarred. At one time I wore makeup to enhance my own features. Now I wear it to conceal the scarring damage PCOS has done to my face. I share this experience with you because PCOS is a serious ailment and this is just one of the areas where it can effect and disrupt your life.

Is PCOS fatal? No. Rather the disease causes other potentially fatal complications and symptoms in addition to infertility. These include the following:

-Irregular or missed periods

-Numerous cysts on the ovaries (why this occurs in some women and not others is unknown)

-High Blood Pressure

-Elevated insulin levels, Insulin Resistance, or Diabetes

-Infertility (generally the result of chronic anovulation)

-Excess hair on the face or body (Hirsuitism)

-Acne (Seborrhea)

-Weight Problems or obesity that is centered around your mid section

-Thinning of the scalp hair (alopecia)

-Dark patches of skin, tan to dark brown or black (a sign of insulin resistance called Acanthosis Nigricans)

-Depression

The symptoms and severity in which you experience them is completely individual and (I can't stress this enough) is different for every woman. Ironically I was told that stress was making my PCOS symptoms worse and if I were less stressed they would get better. Being told not to "stress" when your face is erupting in cysts -this is irony at its best!

In addition to the symptoms that can occur with PCOS, the syndrome itself puts you at greater risk for the following:

-Endometrial hyperplasia and endometrial cancer

-Type II Diabetes

-High Blood Pressure

-Disorders of lipid metabolism

-Cardiovascular disease

-Stroke

-Miscarriage

-Weight gain

I was finally correctly diagnosed at 26 and I credit the internet for this. Before I went to yet another doctor I scoured search engines for disorders and diseases that matched this collection of symptoms I'd started having since the onset of puberty. Every once in a while I'd run across the Syndrome known as PCOS or Polycystic Ovarian Disease. I did more research on the subject and was even able to interview one of the leading researchers at the UCLA medical facility. He's researching the genetic component to PCOS and he believes it might be the oldest genetically transferred syndrome. He hypothesis that way back when, when people were primarily nomadic, women with PCOS experienced the highest quality of life. And he has a point. Just think the women who experienced the highest quality of life were the ones who had fewer children (less hardship to the body) and retained the most body weight (because they stored the most fat their bodies had more reserved sustenance when times got lean). Infertility and weight gain -two of the most presented symptoms of PCOS. Anyway its an interesting theory and I was happy to get his insight.

So packed with a notebook of information on PCOS I went to the doctor and disputed my than diagnosis of PMD (premenstrual disorder).

In the end I turned out to be right and after a blood test and ultrasound (I am one of the women who has cystic ovaries) my diagnosis was confirmed.

A diagnosis of PCOS takes some work. First the collection of symptoms you exhibit must be evaluated. A blood test to identify your various estrogen and progesterone levels, and a pelvic ultrasound should follow. Family history and past menstrual patterns also play a role in diagnosing PCOS.

Knowing what is going on with your body is always a relief. It gives you a place to start from. You know what your dealing with. Unfortunately with PCOS sometimes this is all the comfort you get. At this time it is incurable. The best of treatments (like the ailment itself) is individual and depends largely on the patients goals. Do you want to have a baby? Lose weight? Manage acne? Lower insulin resistance to help stave off diabetes?

Oh yes... As with many areas of PCOS, even the treatment is a fuzzy grey and there is still much debate as to the "optimal treatment." And if you're wondering why something that effects 10% of the female population worldwide and has existed for such a long time is so misunderstood? Well this is largely do to the lack of large scale clinical trials. I guess the medical community has been too busy solving male hair loss and erectile disfunction...

There are treatments available though so don't lose hope. Meteformin is prescribed to help with insulin resistance. Antibiotics can be prescribed to heal acne infections and for those wanting children the cysts can be removed from the ovaries (temporarily -they do grow back) by surgery. Dietary modifications can result in weight loss which seems to reduce a multitude of symptoms (this in particular worked for me).

The important thing is this: If you feel there is something just not right with your body and you have experienced any combination of the above mentioned symptoms GO to your doctor! Don't give up if discouraged. Remember YOU know yourself best. It's important if you have PCOS to get a diagnosis as soon as possible. The longer you go without a diagnosis the more serious your symptoms and their resulting ailments can become. Cardiovascular disease is the number 1 killer of women and diabetes is at an all time epidemic. PCOS increases your chances of contracting both of these diseases.

Your health is THAT important! So if you think you might have PCOS or know someone who does check out the information I've listed below and get help.

Comments 17 comments

Stephanie... 8 years ago

This is a wonderful post, you summed up so much, without getting lost with so much of what I like to call "PCOS Medical Jargon".

I have spent 17 years trying to hide my hirsutism, and finally reached out, and a reporter has written about my story. I'm hoping that I will finally get the help I need.

I've never publicly written about my PCOS, but I think its time.

http://www.torontosun.com/News/Columnists/Blizzard...


Gene Keeper 8 years ago

Such an important article!


Alice 8 years ago

The doctor said my ultrasound indicated possible mild symptoms of PCOS. I have mild acne and menstruate once every 5 weeks (or is normally irregular when i'm under stress), which aren't the most evident symptoms of this disorder.

If i go back to my exercise routine on a regular basis and take in low GI foods, can PCOS be completely cured? Please reply, I'm very concerned and upset!


Adries World profile image

Adries World 8 years ago from California Author

Alice-

Currently there is no cure for PCOS, but with diet, excersise and (at times) medication, PCOS can be controlled and the symptoms lessened.


Pamela 8 years ago

Great post... I am so upset to hear others have had the same horrible treatment and misdiagnosis that I had. Its just wrong. We count on these doctors to take care of us, and instead they let us down. I too basically went to my doctor and said, look, I have this, test me for it. THey finally diagnosed me after years of fighting with them.

I'm glad you were finally diagnosed, but terribly sorry for what you went through. Keep up the great posts, we need to educate as many women as possible about this condition.

Pamela


the Cyster Connection 8 years ago

come check out our pcos message forum!!! Almost 500 members strong!


Insulin Hub 7 years ago from Colorado

This is truly a great article. I so appreciate the details you gave. I am so proud to be a woman and see how willing we are to share with each other!

You mentioned that you were able to learn about PCOS because of the internet, and that is so true! The medical community is in many ways still in the dark about PCOS, so being able to find information on the internet has changed countless lives and empowered women to take charge of their own health. All hail the Web!


Tricia 6 years ago

Hi, my name is Tricia, I'm getting ready to turn 17 and I was diagnosed with PCOS when I was 13. I had to go to 15 different doctors before they would even discuss putting me on a combo of Metphormin and Ovcon(birthcontrol). I started having problems when I was just 12 years old, but where I was so young no one wanted to help me they'd say you're too young like I could help that. Finally a day or two after I turned 13 I had a blood test and an ultrasound which showed that I had PCOS and very very big cyst it was the size of a basketball (i have pics) and weighed over 6 pounds. Needless to say i had surgery to remove it but my symptoms still got worse. I've been anemick ever since I can remember... as you read above nobody has the same symptoms. Mine are really sever I've been on and off homebound since i was in the 6th grade and I haven't got to go a full year of highschool, don't even think i've made a full semster. IT IS VERY VERY VERY IMPORTANT THAT YOU GET TESTED FOR THIS IF YOU HAVE THE LEAST LITTLE SYPTOM BECAUSE IT WILL GET WORSE!!!! Don't wait until it's to late. With the medicines and ongoing research you don't have to suffer as much, they don't cure it but they do help. Don't give up!!! If you haven't found help keep trying the right doctor and the right combo of meds is out there. I promise.


sheena 5 years ago

i was detected with pcos few days back.i am 26 years old and married for the past 8 months.i went to the doctor regarding my irregular periods as i was planning to have a baby.i had not taken even a single contraceptive method.it was then when i came to know about my disorder.the most amazing thing is that i am extraordinarily thin.i am under medication and very optimistic that i'll conceive in nearby future.


amymarie_5 profile image

amymarie_5 5 years ago from Chicago IL

Thank you for sharing your experience with PCOS. I was not diagnosed until I turned 30. With the exception of balding and obesity, I have all of the symptoms. I got my first period when I was 13 and did not have another period until almost a year later. That's how it always was with me. Doctors told me it was normal. I went to so many doctors. I started getting dark facial and body hair while going through puberty. Everyone told me it was because I'm Italian. I had severe acne. I was insecure. Boys and even my family members used to tease me. In my teens and 20s I had a lot of insecurites and suffered from severe depression. Now that I was finally diagnosed a few years ago and am on medication, most of the symptoms are gone. I don't have access hair on my body or face anymore except for maybe a few strays here and there. I am also on anti-depressants. It irritates me that there isn't much study done on PCOS. Even when it comes up in conversation I have to always explain what it is. You are absolutely right about how women need to start being screened for PCOS. I would not want another young girl to ever go through what I went through. Thanks again for writing this hub. I voted it up.


Dbbb8 5 years ago

Very nice article.my periods were irregular from very begining and my doctor said it was due to puberty.i consulted many docters and reason was same,i was having sever acne problemand more hairs on my body.finally ayear ago i was diagnosed with endometrosis and pcod both.i am taking regurly medicine and now i have clear skin n my body hairs have decreased than before. i am 19 yrs old and i am very positive toward my future and i wont let my disease influence my life.i think more teenager girl should be known about pcod becoz before i was diagnosed i didn't know about pcod


hiit 4 years ago

Very interesting topic, thank you for posting. Great hub!

Ron from Fitness http://www.intervalstraining.net


missymoo195 4 years ago

I am 31 years old, since i was a teenager i have suffered from terrible mood swings and depression. When i was 14 i went through a traumatic time, with my a death in immediate family followed by abuse and my parents divorce, so i was referred to psychologists etc...

i also had the type of acne you described but on my back and chest, occasionally on my face, was told it was due to hormones and given cream to "clear it up and dry it out" and that was the end of that. I have always had irregular periods and was like you told some women are like that.

5 years ago, i miscarried twins, 1 naturally and 1 was unseen and infected my womb! i was told then my ovary may be scarred by it, but was just left with more anti depressants and told as i have had depression for years i should just do CBT. i did that for years... have now been on anti depressants for 10 years and in the past 2 years have gained weight and gained...

my partner and me are on verge of seperation due to the violent mood swings i have had even on meds, like yourself, 1 symptom above all else had me trawling the internet, my normal monthly cycle includes sore breast tissue for a week to 10 days BEFORE my period, and eases by day 2 of period. however 6 weeks ago i went to docs as it was 2 weeks AFTER my periods and my breasts were AGONY, i demanded i had m,y progesterone tested.

so glad i did!! my tests came back today with 2 hormones ellivated, so they now are getting me scanned and re doing tests after my ovulation time ... to confirm what it is.

My symptoms are, depression, extreme anxiety, muscle pains, cramps throughout month in abdomen, break outs of acne back chest and chin every month, sever mood swings, now i haven't had a period in 7 weeks. nail quality terrible, hair condition awful, tiredness, with insomnia though.

i agree with you, if you think there is something wrong.. do your research and FIGHT! am so glad i did, the relief of being able to explain to my partner, i am not a nut case, lol there is an issue. i have been trying to lose weight (middle section) and have had to do a lot of exercise a week to only lose 1 lb at end of it. though i am able to think a lot clearer and cope easier after doing it!!!


fmzqoecmxg 3 years ago

Oh, thank you so much for providing this article. i was searching for this info.


Nicole S profile image

Nicole S 3 years ago from Minnesota

Hubpages needs a button for 'helpful' because I don't feel like 'useful' describes this well enough! This was very helpful and insightful. Thank you for sharing!


Ruby 2 years ago

I would like to thank you for this article, it has opened me up to what PCOS actually is and this does it perfectly. It has helped me understand my assignment 10x more and i can feel like i can thoroughly debate why i think PCOS should have a cure.


Alka 2 years ago

Is there really any cure for baldness in teenage girls due to PCOS

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