Now I'm not PCOS? Confused.

mightyminx · 07-30-2008, 09:59 PM

I went for a follow-up sonogram/vaginal ultrasound after being diagnosed "likely PCOS" by my gynecologist after he noticed very high testosterone on my blood test as well as my PCOS-like symptoms (facial hair, obesity, killer PMS, acne).

The gyne wasn't in on the ultrasound today, but the woman who performed it said I wasn't technically PCOS, but multicystic, since I didn't have the typical string of pearls on my ovaries. I only had 5 on my left and 7 on my right, and she said that put me right in the middle of being multi, but not poly.

Do multicystic ovaries turn into PCOS or is this just something not at all related? I'm wondering why I would have the hormonal symptoms of it, but not have the actual reproductive symptoms (my periods are regular, although the cycle's lengthened from 25 days to about 32 in the past year)

The technician was very nice but didn't want to answer any of my "doctor questions" so I thought I'd check here in the meantime and see if anyone else had similar experiences. I thought I was so close to getting a definite DX, and now I'm a little bit disheartened to find this out.

Eva37 · 07-31-2008, 12:09 PM

welcome to sc

from what ive learnt here- you dont have to have cysts on the ovaries to have pcos. I used to have cysts but they've disappeared now.
eva

Stacie M · 07-31-2008, 12:58 PM

I am not sure what the tech/nurse was talking about... You do NOT have to have cysts on your ovaries to have PCOS (which is why I hate it being called that, would prefer Stein-Leventhal). But, apparently you DO have cysts, but she was saying it wasn't in the ring of pearl formation, which really doesn't mean anything as far as I know. At different times over the past ten years I have had u/s with no cysts, with a few cysts, and with many cysts. It just depends on how I am doing at the time.

If your doctor felt your blood work indicated PCOS, then I honestly don't think your u/s should make or break your diagnosis. But, the fact that they did it and saw some cysts should probably just reaffirm the diagnosis.

Good luck, and please keep us updated on what your doctor says. If he tells you that you don't have PCOS because you don't have enough cysts, I would RUN to another doctor for a second opinion. Many times diagnosis is made on blood work alone, which is a much better indicator of whether or not you have PCOS than an ultrasound is. Remember, PCOS (also called Stein-Leventhal) is a disorder of your endocrine (hormone) system. Ovarian cysts are just one of the many, many symptoms of it that you may or may not have. Just as one woman with PCOS might have skin tags and another might not, or one may have acne and another may not. You don't have to have all of the symptoms to have the disorder.

msrose · 07-31-2008, 03:50 PM

It also depends at what point in your cycle you are getting the US. When I was on birth control, I did not have any cysts at all. When I got the US done at one other time, there weren't many either. But then my endocrinologist asked me to do it around the time I would be ovulating and there was a string of pearl like cysts and was officially diagnosed. You don't need all of the symptoms though to have PCOS. For an example - I have the weight, the IR and the period symptoms (when not on MET), but do not have the acne or facial hair....if you have a few of the symptoms, thats all it takes.

Beane · 08-01-2008, 06:30 PM

I just recently got an ultrasound of my ovaries on Monday (7/21) and the doctor who performed the ultrasound told me "These look like ovaries that could have PCOS, but they could be the ovaries of a normal person too"

He seemed very non-committal to me, although I remember him making a "hmph" noise. He also suggested that I looked like I was going to have AF soon (I have not had AF in 1.8 years, but I go on Provera Tuesday after I re-take a pg test to make sure I am not pregnant, Dr insisted).

My GYN ran all the blood works and she believes I have PCOS, a confirmation from a diagnosis from when I was 16 about 10 years ago.

So I agree with Stacie M that is not just about having cysts on your ovaries. Besides, if we were to get technical, they're not cysts at all but follicals

lyssa326 · 08-03-2008, 02:08 AM

That's one thing I've come to learn from doing some research on here and some other places... the term "Polycystic Ovarian Syndrome" is actually slightly misleading as it makes it sound like cysts in the ovaries are the problem when in reality they are more of a symptom of an endocrine disorder (not a reproductive disorder as the term PCOS alludes.)

When my tech looked at my u/s I did have the "string-of-pearls" and she told me the same thing that Beane's doc said and that is that it looked like ovaries of someone with PCOS, however, it is also possible for a woman to ovaries that looked like that and still have perfectly normal functioning ovaries. She said that an u/s alone could not diagnose PCOS, it was my GYN that did (I guess based on my symptoms and some bloodwork.) Although, I will be going to a new doc to get more bloodwork that I feel should be done to actually make sure this is what it is, plus my GYN didn't offer me any solutions other than BCP because I'm currently not TTC, and I've come to think that's a bunch of bull crap, so I will be getting a second opinion (prob. with an endo. or rep. endo.)

So I said all that just to say that PCOS apparently affects us all completely differently and I have heard that you don't have to have cysts to have PCOS (which is why I said the term is very misleading.) If I were you I think I would definitely find another doc to give you a second opinion, that way you can be sure and find the best course of treatment.