PCOS...seriously?!

I've seen a lot of PCOS sufferers on the various forums, so I thought I'd write and get everyone's opinion.  I'm a 32 yo F, never had any female issues, was on the pill from 18 years old to about a year and a half ago.  From about April of 07 to April of 08 I lost 40 lbs the slow, healthy way, going from slightly overweight to BMI 22.  I also exercise at least 6 days a week, either 60 minutes of pretty strenuous elliptical (8+ miles) or full upper and lower body heavy weights. 

I missed one period this summer and it came back, and now I've missed 3 in a row again.  So I go to my Dr. yesterday and she tells me that I have PCOS.  Without ANY symptoms except some missed periods.  Blood test shows hormone levels, insulin level all normal.  No hair loss, hair growth, acne, not overweight.  I asked if she thought I needed an ultrasound to confirm, and she said that PCOS people don't even necessarily have cysts, and if they do, that doesn't prove anything because non-PCOS people also have cysts.  This is sounding to me like a catch-all when they can't diagnose you!  I even asked her if the weight loss and/or exercise could be causing it, and she said no.  Any opinions?

Congrats on losing 40 lbs!  I'm really impressed with your exercise routine... 

My doctor told me I have PCOS last year...  and sometimes I feel as it was a catch-all diagnosis too.  She did do a blood test and said my hormone levels were not irregular but in an odd ratio, but I don't have any cysts or other symptoms.  I was on birth control for about two years, went off it summer of 2007, and my period didn't come back until they gave me some medicine that made it.  I have been on birth control since, except for a little over a month ago when I stopped taking it -- but this time my period came back like normal. 

Maybe my issue is that I'm not really sure what PCOS is...  I've tried to read up on it, but it seems so broad. 

Thanks chellefraggle, it's good to know that there's someone else out there in the same boat as me.  Almost everyone I read about has some other symptoms.  My hormones were all perfectly normal- not even in an odd ratio.  I don't want to go back on birth control because of my family history of breast cancer.  But I too am taking the medicine to get my periods back- some form of progestin.  I have 10 pills to take, one down...still no period.  How long did it take to come back when you started taking them?

pcos is diagnosed through blood tests.  If your LH/FSH ratio doesn't have the typical pattern, it isn't PCOS.

I would see another doctor.

My sister is a skinny little vegan and when she was diagnosed with PCOS we were shocked. We thought more than anything her missed periods should be due to her diet, although she was very careful to eat a large variety of things to supplement her lack of meat and dairy. But, it turns out, two years later she did develop some cysts on her ovaries, so I guess the doctor was right.

My father is also a type I diabetic, though, so in some ways it did seem feasible although she has no insulin issues.

If your blood work is normal, though, I'd definitely get a second opinion. But at the same time, your doctor might be right.

Hormonal blood tests aren't the catch all diagnosis either.  I gained weight, fought with my clueless doctor for the results, stopped all periods for months and lost all my energy, and was covered in acne on my face, back and neck. I am also a triathlete so gaining 21 lbs for no reason and being so unhealthy was a little strange. ( i was originally 135 lbs  i grew to 156 in 6 months....not in the official obese range...but not healthy when i changed nothing in my lifestyle!!)

My hormone levels came back as completely normal 3 times.  They still are "normal"  my blood sugar came back at the top of the "normal" fasting range.  My ultrasound then showed multiple cysts. 

You apparently need to have at least two symptoms from a list of about 6 to have PCOS.  Due to my extreme exercise regime and healthy eating patterns I was told eventually my blood sugar was not normal in the slightest, and that combined with the outer physical symptoms (acne/weight gain) and inner physical (cysts/exhuastion/lack of periods/high blood sugar)  was PCOS. my hormones never changed!!

I was put on metformin, and now I am healthy as a horse, lost 20 lbs feel great etc etc etc  oh and I have periods, and I got my acne taken care of.

so thats my story for PCOS.  hope it helps.

I have PCOS, but I was diagnosed after some pretty extensive testing (blood & urine teasting, ultrasounds, pelvic exams, lots of medical history questioning) and I have never had a regular period (while not on the pill), since I first menstrated, at 16 (a little late, I'd say), and have always had a very difficult time losing weight...so I'm pretty sure I was diagnosed properly.  But it does sound like your doctor is using this as a catch-all, did they put you on any meds for it, or was it just "you have PCOS, deal with it"?? 

Having PCOS puts you at a much higher risk of type 2 diabetes (50% of women with PCOS are diagnosed with type 2 before the age of 40), so you need to make sure you know what's going on here so that if you do have PCOS, you can do something to reduce your risk of diabetes.  I would see another doctor and demand proper testing.

Edit:  As the above poster, I was put on metformin, but I haven't been in for any testing since (it's only been 4 months on the drug).  My doctor said that this drug can reduce the additional risk of diabetes to 0, help in weight loss, and reduce cysts.

i've had an ultrasound since...(hospitalized for stomach pains..they thought it was the cysts..it was appendicitis!)

the ultrasound showed the largest cyst wasn't there anymore..and less smaller ones.. also my blood sugar was average in the hospital, not high normal anymore.  that and the weight loss and the returned periods.. i think it worked :-)

to the original poster:  get another doctor!  mine was a really good OB/GYN

Original Post by emmamstewart:

i've had an ultrasound since...(hospitalized for stomach pains..they thought it was the cysts..it was appendicitis!)

My husband's a medic and he was so sure I had appendicitis when I was diagnosed with PCOS because of where the pain was and the intensity.  My doctor said that the pain symptomes of the two are very similar...it's a good thing they caught the appendicitis before your appendix ruptured!! 

As an OB/Gyn I can say that the biggest problem with PCOS is that it is underdiagnosed.  Blood tests are NOT testing for PCOS they are testing for the presence of more serious conditions.  Ultrasounds are NOT necessary for the diagnosis of PCOS except in the UK.  Currently there is no consensus however most physicians make the diagnosis  by the presence of two of three criteria.  Either irregular/abnormal menses, U/S ovary irregularities, evidence of hyperandrogenism.  Be careful of pronouncements if you don't know the material

yeah..i had ran 6 miles a few days before and nearly collapsed with the pain... then just ignored it.. dumb yes  but id had the pains before and survived.. then i woke up with a horrific temperature, and realized it was something different..went to the er and was out (minus an appendix) 23 hours later! 

to the above poster - its a discussion board i'm just passing on what I was told, and not claiming to be anything im not.  i've been told different things by different doctors...