Hello ladies,
I started having PCOS symptoms at puberty but even with the detailed family history I gave to doctors, I was not diagnosed until age 23 when I finally decided to see an endocrinologist who specializes in PCOS. She was the second endocrinologist I saw. I also went through about four gynos who said birth control pills would solve everything and several other general practitioners. My mother was diagnosed with Stein-Leventhal in the 70s (after nearly dying from a ruptured ovary) and still not one of those doctors even thought about a connection with me. I even had one doctor tell me I couldn't have PCOS because I was not overweight.

My symptoms were varied: low blood sugar, excessive body hair, terrible and irregular periods and pms, and by the time I reached 23, slight balding. My blood sugar issues began in high school when I would feel faint every day before lunch. Then in the late afternoons, I would only want to sleep. In college it got so bad that I finally saw a doctor and was misdiagnosed with hyperglycemia instead of reactive hypoglycemia as part of PCOS.

With the wonderful endocrinologist I found, I was put on Glucophage and Aldactone. There isn't a symptom that hasn't been lessened by this drug combination. The last cure for me is going on a low-carb diet to completely regulate my blood sugar (which up until going lc still had mild swings if too many carbohydrates).

I would like to read other stories of how and when you were finally diagnosed. I'm curious because of my experience and that of my mother. Why is this disorder so neglected by doctors?

Hi Shazzer,

Unfortunately I have almost the exact same story as you. Almost 6 years and way too many dr's to count before I got a diagnosis and any help. It has astounded me how many women there are out there with the same story too.

I spent a lot of time being angry at the ignorant dr's - but have decided to not waste any more energy on them. I know I am not crazy now.

I would love to see a national compaign for PCOS awareness. That I would put my energy into.

I'm 23 and just got diagnosed 6 months ago. I've had symptoms for many years now and most doctors dismissed my concerns. I finally saw an OB/GYN who diagnosed me immediately (and I was there for just an annual exam!).

I was diagnosed just this past April, I am 22 years old. I kept going to different doctors but they all just kept putting me on a different pill. Im glad to finally know and understand whats wrong, but I just fear that I wont be able to have children or something like that. My doctor told me that even if I get to my goal weight I would still need to remain low-carb in order to keep the symptoms away. It was hard at first but Ive gotten used to the idea of it and also this WOE. Few slip ups here and there, but I gotta remain a Lcer for my health and just for me.

Ladies, thank you for your stories. I wish others did not have to go through such turmoil with diagnosis. But I'm glad also that all of us have been properly diagnosed and can now treat our symptoms. I can't imagine what women must have felt ten, twenty or more years ago. I've been frustrated for a while, but like you Meljean, I would certainly put energy into a campaign for awareness of this disorder.

Deeray, one of the first things my doctor told me when I was diagnosed is that you can have children with PCOS. If you do have difficulty getting pregnant, there are several solutions. Don't give up hope!

Lastly, here is a story to make you cringe.
A friend of mine is currently finishing medical school and wants to be an OB/GYN. When I told her of PCOS, she said, "Yeah, that is where your ovaries get cysts on them." I said it was so much more than that, and she was surprised. She was not taught anything about it except the cystic ovaries. It just baffles me.

I am happy to hear that some of you were diagnosised in your 20's! I was recently diagnosised for PCOS last year at the age of 33! I have been going to doctor after doctor trying to get this sorted out. Telling them my symptoms and basically what I wanted done for it. All the previous doctors put me on BC and told me we'd worry about the problem when I wanted children. As if...weight gain, hair growth and acne were not enough reason for concern! Finally one doctor did the whole series of tests and I was placed on Yasmin. Which was working fine. Then we moved. Now I am in the process of trying to find a new doctor that deals specifically with this issue. Especially since NOW we are trying to get pregnant.
In fact, I went to a doctor today, and told him that I have not had a mens. cycle since coming of the pill. Told him I wanted to have children and try and get my PCOS under control (of some sort). He never even acknowledged my statements.
BACK to the list of Dr's.
Anyway...I have been irregular since my teens. Having always been active in sports, most dr's said the irregularrity was part of growing up.
But I was always of normal weight. In my late twenties I noticed additional hair and additional weight gain. One doctor told me I should be walking/running 5 miles a day to lose the weight. (of course this is one doctor that refused to do blood work to find out what was wrong!)
Needless to say, it would have been nice to find a pro-active dr that would have diagnosised me younger. And then today to top it off with a dr that basically ignored my statement. AHHH---Frustration!
If anyone has a name of a Dr in South Florida that specializes in PCOS, please post it!
Thanks.

Noelle, maybe this thread will help?

http://www.soulcysters.net/showthre...&threadid=44376

My sister is really lucky about her diagnosis. After I was diagnosed at age 23, my mother decided to have my sister go through all sorts of tests. My sister is 12 years younger than me and was showing signs of PCOS like rapid weight gain. Anyway, sister got positive diagnosis, but doctor won't medicate her until she is 16. The doctor told her to limit her carbohydrates, track her periods, etc. Poor kid. She is active in sports at school and for snacks for games, people bring in Gatorade and bagels. Thus she is always tempted and the other kids just don't get it.

I haven't been officially diagnosed yet... Have an appointment at Endrocrinologist this week... However, I have just read a book that might be interesting to some.... It's called It's My Ovaries Stupid! It is a terrific book and gives a lot of insight as to what affect ovaries and hormones can have on your body... It can even cause heart attacks...geez... Depression, dry eyes, psychotic disorders, obesity, hair growth on body, thinning of hair, fatigute, and lots of other problems.....

She goes through each symptom and tests to use to diagnose...Excellent!

I think it is all to common to hear that people are not treated properly for PCOS....I began having problems at 19 that were obvious and continued forever it seems to get help....more doctors, both western and alternative...you name it...ugh...finally in a fluke I was given a clear diagnosis of PCOS at age 31! Now, at 32 I am still trying to figure out what is the best for me and am working on it...it seems to take up a portion of everyday...either the weight, lack of periods, hair issues ...you name it...I no longer think I am crazy or a hypochondriac...I know that my body is not normal but I am trying to figure it out and hopefully those of you that are younger will not go through all the same stress or at least for not as long....

Hi, I was diagnosed at the age of 23 by my gyn and put on BCP. I steadily gained weight on the BCP and was on them for almost 20 years. I hated them and what they made me feel like. I learned several years ago about the insulin connection via and article in Women's Day and decided to pursue treatment from an endocrinologist up on the latest treatments (glucophage). After some testing he put me on glucophage 1500 daily. I am now also on aldactone (which has had a dramatic effect on the body hair - almost none now) and actos. My endo wanted me to do low carb but I fought it for a while because I was convinced I couldn't stand it. I have now been on it for almost 4 weeks and although my weighloss has not been stellar, I am doing just fine. I miss my diet drinks though!!! I just have to keep remembering that they don't taste nearly as good as losing the weight feels!!!

I'm SO ANGRY!!!! I have been going through this since April of 2001 and STILL HAVEN"T been diagnosed!! My doctor has run pelvic exams, blood tests, sonograms, I've been on Provera (which was the worst thing ever, it made me have a period for 58 days). I'm back on Yasmin until I could loose weight, but my god what does it take to say THIS IS WHAT IS WRoNG WITH YOU AND THIS IS WHAT WE ARE GOING TO DO???? I have an appoinment with a specialist in October to see if I'm fixed, and I'm so scared. I've lost 30 pounds, but am scared of disappointment. This is has been the worst for me, b/c I can't have kids and my gyno has blown me off so much!

You mean you have not been diagnosed with PCOS? It sounds like you've had some rough times and that must be very frustrating. Are you just going to gyno? Have you thought about going to an endocrinologist? You can find an endo or gyno who actively treats PCOS patients at pcosupport.org.

Yes, I have been going to my gyno to see what is wrong... and she just insists on NOT diagnosing me with PCOS even though I know that is what is wrong. I do have an appt. with a specialist October 15 to find out if that is what it is, and to see if I'm fixed since I've lost 30 pounds. It's just been very depressing, and very expensive. I think that is why she hasn't diagnosed me b/c then I wouldn't keep paying her to run more "tests". I just don't know...

Swirl,
Your gyno seems to be the problem. You know something is wrong and she refuses to help you out by doing the most important thing a doctor can do LISTENING and then EVALUATING. I hope the specialist does hear you and tries to understand your perceptions of your body.

There is nothing like an understanding and reasoning physician to treat your problems. Unfortunately, sometimes it is so difficult (not to mention expensive) to find the right doctor.

Shazzer