Overlooked PCOS because I'm Thin

dicey_blonde · 02-15-2004, 05:00 AM

I am new to this site and I probably should be posting this message in the newby forum but I don't feel I am a newby to PCOS.

My doctor had a very hard time diagnosing me with PCOS since I was not overweight. Even with all my complaints which eventually turned out to be symptoms she still did not feel confident that I had this condition. Upon reviewing my ultrasound, she was astonished to find I had polycystic ovaries. She promptly scheduled me for more tests then eventually put me on meds. I have done a lot of reading since I was diagnosed and found that many of the articles talk about obesity. I hate to think there are others who may not get the proper diagnoses just because they aren't overweight.

lots_of_dots · 02-15-2004, 05:45 AM

Although I'm not a thin cyster, I can relate to your story. I wasn't diagnosed with pcos until I was 28 because my af had always come on a fairly regular basis. If only these drs would realize that since pcos is a syndrome, we don't have to have all the "classic" symptoms in order to be diagnosed with it. After years of complaints, it turns out that even though af visited every 24-40 days, I didn't always O. Thank goodness for my pcp - she's the only one that was able to think outside the box and send me for the proper testing. Thank you Dr. Weld!!

PS Welcome to SC!! You will LOVE it here!!

Anne1978 · 02-16-2004, 07:23 AM

Welcome to SC! I have been told by a number of doctors that my polycystic ovaries would basically go away if I just gained weight! I finally found a great MD who understands that not all thin girls are anorexic and that if I eat well, then there is clearly something wrong with me other than my weight!

I think there are lots of ladies here on the thin cysters board who have had similar troubles getting diagnosed.

Best wishes,
anne

pooker · 02-16-2004, 09:09 AM

Hi!
I am considered to be a thin cyster. I had the same problem getting diagnosed, too. I even had a nurse, who has pcos, tell me I didn't have it simply b/c I wasn't overweight. Dr's basically ignored me, until I saw an RE, who ran a slew of tests, and confirmed that I DID have it!
Dr's...!!!

lissadell · 02-17-2004, 03:09 PM

Hi dicey_blonde,

Welcome to SoulCysters!

Unfortunately, it seems like your experience is relatively common for thin cysters. It took me a while to get diagnosed (technically, I've never been diagnosed!) and getting medication was also a bit of a challenge. It pains me too to know that there are probably a lot of women like us who are not appropriately diagnosed/treated because they do not fit doctors' stereotypes about PCOS. And, although I am so happy to not have the weight issues associated with PCOS, it is frustrating to read articles and studies that center on obese/overweight women and wonder if any of the information really applies to me.

I am so happy you have found us. This is a terrific site, with a lot of wonderful supportive women!

Best of luck,

Lissa (fellow thin cyster and fellow blonde!

)

BeetleGirl · 02-17-2004, 08:31 PM

I was never fat until the last and a half year when I put on over 100 lbs. Nobody acknowledged the fact that I had pcos one doctor hinted I had cysts on my ovaries and knew of my abnormal periods and facial hair and still couldn't figure out that I had PCOS. I had to tell my doctor I had pcos after reading an article in a teen magazine in a waiting room of a doctors office for an entirely different problem.
Some doctors are just dumb! I think they get their degrees from the back of a cereal box with 2 proofs purchase.

dicey_blonde · 02-17-2004, 11:35 PM

Wow - Thank you all for the replies and welcomes!!!

How many different doctors did you see before you were diagnosed? I had visited a dermatologist regarding my hair loss and skin problems, I have visited my PCP numerous times for the same problems, my gyn for cramps, pain and what she called dry periods (no O). I had multiple ultrasounds which detailed numerous cysts on my ovaries some of which would grow very large then burst - those would take me out of commission for days with fever and pain. I had dark patches of skin - I had thought was cancer and was biopsied by the dr as they weren't sure what it was either. I never got a true diagnoses of what thoses were until I read about acanthosis nigricans - tadaa!

I found my diagnoses before all those drs. I had been searching the web trying to find herbal remedies to thinning hair when I happened upon PCOS. I could not believe that everything I was going through (including hair loss) was a symptom of PCOS. I promptly went to my doctor and had a heart to heart talk. After getting back the results of my ultrasound I started crying and I am not sure if it was for joy that I found what was wrong with me or saddness as I could not think of a more devastating thing to have happened to me....

zelda · 02-18-2004, 02:43 PM

i think we could sing a song about that! i can totally relate.

mini-rant:::
since i'm not overweight, no doctor that i had seen thought to look for it. i visited about a million dermatologists from age 13 onwards, but no one made the connection. even when my periods started disappearing. and when my pcos was finally diagnosed (oopsie, no periods again!), my then-gyn didn't think it was important enough to inform me about what i had - she believed the only implications for me were ttc-related ones - and put me on the pill and told me not to worry about it.

grr!

i guess that it's really important to be agressive about getting treatment and informing yourself because the doctors -at least in my experience- sure as heck aren't doing it. in my case, i think that there are also some cultural issues. by this i mean that -again, in my experience- doctors here are not up-to-date on the latest treatments, which in america are seen as standards.

the big difference for me came last year when i visited an endocrinologist who was active in academic research - he had just coincidentally returned from a conference where someone had presented on pcos. he tested me for everything you can imagine - diabetes, heart problems, etc. and drew blood like there was no tomorrow. so far, he's been the only one willing to 'experiment' on me with metformin and to see my symptoms as being related to pcos. my angel!

pfunk · 03-12-2004, 07:25 PM

It's not only syndromes in which you don't have to have all the symptoms to be diagnosed with the ailment. This is true of every medical condition that has ever existed throughout time. As a doctor one told me, when was the last time you saw a child with all eighteen of the classic symptoms of measles? Indeed, there probably never has been a single child with all the symptoms.

Allopathic medicine fails to make the diagnosis most of the time because they fail to see a connection. They see a myriad of seemingly unrelated symptoms and try to treat each one individually. In fact, even when they diagnose you with PCOS they still only attempt to treat the symptoms of the condition and not the cause. The cause of PCOS is not that you are synthetic hormone deficient or deficient of organ damaging insulin sensitizing pharmaceuticals.

Every Woman's Book by Paavo Airola and Saving Yourself from the Disease Care Crisis by W. Stoll are interesting books related to these very problems with conventional medicine and have offered the only information as to the resolution of these symptoms by treating the underlying cause which is related to the stored stress response within the hypothalmus which stimulates the release of excess chemical messengers to tell other chemical messengers to be released and tissues to respond by carrying out physiological processes. Indeed, this is the definition of PCOS hormone imbalance and improper physiological activity (formation of cysts rather than ovulation).