Post # 1
I had some blood work done and the results came back today. My endocrinologist, who ordered the tests, said she thinks I have PCOS. Someone from her office delivered the news, the doctor is supposed to call me back, but not until Monday. I’m really surprised because I have never had irregular menstrual cycles and my periods have never been particularly painful. I have had issues putting on significant amounts of weight very quickly, but since starting an antidepressant last fall I have lost 20 lbs without effort and am within the healthy weight range. I’m really unsure why this is my diagnosis. Does anyone have any insight? Have you been diagnosed with pcos without typical symptoms? Do you have any idea which blood test may lead her to think I have pcos? I scheduled an appt with my primary care doctor for a second opinion before I start taking the medication she prescribed, would it be wiser to visit my gyn instead?
Super confused here. :-/ I hate when the people calling with results have no way of answering questions!
Post # 2
Hey girl! I was diagnosed with lupus and pcos when I was 17! I have very few symptoms of pcos, and when I was tested for it, it was only to rule it out as the cause of my hair loss. I haven’t made any moves to do anythint about it.. I’m mot TTC and won’t be for many years if I do plan on having children. I think there a specific test they use to look for pcos, but I’m not sure because ive had so many tests done. A lot of blood test test for a specific abnormality/range of numbers/dna marker that states you do or do not have it. Sorry I’m not much of a help, just wanted to let you know you’re not alone
Post # 3
Whitetoes: Thanks 🙂 I’m hoping it’s some sort of mistake, but who knows!
Post # 4
I also have PCOS and never had irregular periods. The way my Dr. explained it to me is that not everyone with PCOS exhibits ALL the symptoms of PCOS. My symptoms are weight gain (especially in the mid section, excess body hair, elevated levels of testosterone, and a few small ovarian cysts (she had to do 2 ultrasounds to find any)…this disease makes you feel so attractive, huh? lol
The only blood test that showed anything abnormal for me was slightly elevated levels of testosterone. I would ask your doctor if you are unsure. I’m working with a PCOS/Fertility specialist AND an endocrinolgist right now. Not TTC yet, but trying to get a jump on it before we are. My suggestion is to do a lot of research and have an open dialogue with your doctor. Not a TON is known about PCOS, so I try to stay as educated as possible.
Post # 5
twistaway: I know you don’t have to exhibit all of the symptoms but I thought you had to have 2 of the 3 sections? (Sections being irregular/painful menstrual cycles, cysts on ovaries, or other symptoms from high testosterone) She didn’t do an ultrasound or anything like that. We’re not ttc yet but this “diagnosis” is making me think we might want to consider trying sooner rather than later! Thanks for replying. I’ve been reading about it all weekend and I’m still not sure why she thinks I have it. Good luck to you!
Anyone misdiagnosed with pcos?
Post # 6
- Wedding: September 2014 - Turf Valley
ImaStarr: I was just “diagnosed” with PCOS the Wednesday before last. I put it in quotations because my OBGYN said I have it based on an U/S alone, and no blood work. So I have an appointment with a RE on Wednesday to get to the bottom of things.
I too have no real symptos of PCOS. I have no excess weight gain (or difficulty putting on weight), not terribly painful menstruation (I don’t need Midol or Tylenol), no irregular cycles (except this cycle!). No facial hair or acne. It’s bizarre, but I was told that it can demonstrate itself differently in everyone, so I may not show any outward symptoms, but can still have PCOS. I do have cysts all over my ovaries, so that’s about all I have.
I hope you get to talk to your doctor soon and get the opportunity to ask all of your questions. Best of luck to you!
Post # 7
SO glad I found this thread. BUMP for more insight?
I just got back from my pcp who referred me to an endo for possible PCOS…but I have very regular normal periods…I did gain 40lbs in the last 3 years…but I eat healthily (I cook everything) and do exercise I do have some extra hair but other than that I would have never suspected it…my aunt has a hormonal imbalance and gains weight.
Anyone else have similar symptoms that is officially diagnosed?
Post # 8
Im just completing my PhD thesis in neuroendocrinology. PCOS is a spectrum disorder, and while the official diagnosis tends to be given if you meet two out of three criteria, its still possible to feature on the spectrum if you dont meet this. My GP wanted to test me for PCOS because I have trouble losing weight and I have irregular periods. The tests didnt confirm PCOS – my androgens are perfectly normal, and I dont have polycystic ovaries. However the GP still thinks its possible I am affected by it to some degree based on my insulin responses, and how my periods tend to become more regular when I do manage to lose weight. The metabolic side of PCOS isnt really considered in the Rotterdam diagnostic criteria, despite this being a huge part of the disorder. I dont know what your endocrinologist tested for so I cant be sure, but I imagine it was your androgen levels, and possibly metabolic hormones also
Post # 9
What altaira said ^. It’s a spectrum disorder, so there’s nothing puzzing about the experiences in this thread
I was also told I was slightly on the spectrum – based on one of my ovaries looking a little polycystic on the ultrasound. Yet I have regular periods, normal testosterone levels, no excess body hair, and no real weight issues (except a bit of a gain recently due to the pill, but I’m still well within healthy weight range). My gyno basically told me that if I manage to stay at a healthy weight, no other symptoms should emerge.