Questioning new diagnosis...

Nimmie · 05-24-2009, 07:27 PM

My GYN recently diagnosed me with PCOS, and I'm rather confused and frankly unsure of the diagnosis.

I've had "unexplained" infertility for the past 7 years of my marriage (including a fertility workup about 5 years ago). I always cycle regularly, like clockwork. I'm quite thin (5'5", 108 lb). I don't have any of the outward physical symptoms (abnormal hair growth, acne, etc). I've had multiple ovarian ultrasounds and never been told they were polycystic.

Here's where the dr's diagnosis comes in. I recently had a lap surgery to remove an ovarian cyst. The dr said he saw "clubbing" on my ovaries and that the ovaries were polycystic. From what I've read, PCO does not necessarily mean PCOS. Can a diagnosis be made solely on the basis of visual inspection of the ovaries? Does anyone know about this? Could I be cycling without ovulating? I'm thinking I should probably be doing some insulin/blood sugar testing to see if I have some underlying issues...? Can anyone WITH PCOS identify with my lack of outward symptoms?

As a side question, I live in the upstate of SC. Can anyone recommend a good RE who really knows PCOS well?

Thanks for any input!!!

Goose00 · 05-24-2009, 10:41 PM

Many thin cysters (including myself) have healthy inslulin and blood sugar levels and and no indication of insulin resistance, so those tests won't diagnose or rule out PCOS. For me, the diagnosis came from a testosterone level of 78. At my dr.'s lab, anything over 76 is considered "elevated", and even levels at the high end of the "normal" range can indicate PCOS.

I didn't have my first ultrasound (or any other visual inspection) until long after I found out I had PCOS, so that wasn't used in my diagnosis.

Also, it is possible to cycle regularly without ovulating. I did for a long time. If your no doing so already, taking your basal temperature every morning can be helpful in determining whether or not you are ovulating. Its been extremely useful for me!

Good luck! I hope you can finally get an accurate diagnosis and proper treatment!

keohanel · 05-26-2009, 10:01 AM

as well as testosterone, have them test the ration of LH to FH - they should correspond 1:1 but in women with pcos it is off. have you charted or had progesterone tests to confirm that you are ovulating most cycles?

best of luck!

JMac30 · 05-26-2009, 01:34 PM

Welcome to the confusing world of PCOS....

. I was just diagnosed a month ago and have learned so much since. There are SO many different "types" and symptoms of PCOS, it really is a different condition for every woman.
I have learned that even the name "PCOS" is not exactly accurate, as it is possible to have this condition and not have cysts on your ovaries. At the heart of the condition appears to be some degree of insulin resistance, but in us "Thin cysters" our insulin/sugar levels can still be in a normal range, just our bodies are somehow more sensitive to this. Arising from the insulin weirdness can be elevated testosterone levels, and other hormonal imbalances. There really is SO many different symptoms.

I agree that you should see what your LH:FSH ratio is. ALL of my other tests came back normal except that my LH was elevated making my LH:FSH ratio be 2:1.
I also HIGHLY recommend charting your temperatures. You can use an online program like fertilityfriend.com. This will tell you if you are ovulating. Read the book "Taking Charge of Your Fertility". I read it when we were just beginning to ttc and it taught me SO much about my body, about how to tell if I was ovulating, when I was fertile, etc. It really helped me to get a diagnosis and know what to ask the doctors.

Good luck to you!