Thread: Maybe it's NOT PCOS!!??!!

Hey Cysters,

I was a wreck last week (just diagnosed), but now I'm back to "normal". I feel like a million bucks (aside from my bulging disc that flared up and caused me to think it was a reaction to my meds.)

I decided to get a 2nd opinion on this PCOS stuff. The only symptoms I have are:

• Cysts -research I've done says this is NOT a 100% indicator of PCOS
• PMS
• Slight weight gain in tummy-but I'm a "lean" PCOS (5' 3" a week ago, 118lbs-now 115 lbs- normally 110)
• FSH-7.1 LH-7.6 (NOT a 2:1 ratio which could indicate PCOS)
• Progesterone-yeah, it's low. 3.1 needs to be a 15

Everything else checks NORMAL-no irregular periods-nothing!

The 2nd Doc told me 1 in 10 women are now being diagnosed w/PCOS. About half are misdiagnosed due to the fact that scientists/docs still DO NOT know enough about this syndrome, cures and so forth.

I do feel better on my met, but most importantly the Folgard (vitamin). My doc said he wants to test me for Chrone's or Celiac-both "mimic" slightly PCOS/type 2 diabetes. If anyone feels misdiagnosed-get a 2nd opinion, check for other problems that could "mimic" symptoms. Granted, I didn't want to become prego and that's a whole other issue.

I honestly feel I had the horrible PMS (actually, PMDD) due to the way I process carbs. I just felt icky, irritable, cranky and now I fell great because of the Mets/Folgard. I've dropped 3 lbs in a week. I feel awake, alive, happy. I JUST started prometrium 2 days ago. I hope I continue to feel like this.

So do you or don't you have PCOS? I'm confused lol.

One Doc says yes, the other said he wants to run more tests because he wasn't 100% convinced. With very few symptoms, I questioned it as well. I was curious if anyone else out there felt the same as I do. If they felt they were "lumped" into PCOS but not convinced they truly have it.

I don't have the hair issues, acne or over weight. Granted, I've never tried to get prego so not sure of any infertility problems. My FSH/LH ratio was Not 2:1 or over. Yes, I've got cysts, but this isn't completely rare to just PCOS. It just seems a lot of women are being diagnosed with this that may not truly have it. And my 2nd Doc felt this way as well.

The weird thing is I do feel better/more energy on my MET, Spiro, Folgard and just started the Prometrium. So I'm confused too. I guess as long as I feel better, that's what counts. I just wish this syndrome had an actual 100% test. (blood or whatever)

Well with PCOS some women don't have any symptoms at all. I put on another post awhile abck that i read about a doctor who had PCOS an she never knew until she tried to have a baby and kept miscarrying. Some women get all the symptoms some slight an some none. If the doctor isn't completely 100% sure u have it he shouldn't have given u any of the medication.

Anna, my 1st Doc diagnosed me w/PCOS and gave me meds, the 2nd opinion Doc is the one who is not 100% sure.

And as far as what basis the 1st Doc diagnosed me I guess is that I wanted help for severe PMDD. I was fatigued, felt very aggressive, cramps and so forth. He then did an ultrasound and saw the "ring of pearls"/cysts.

I do weight lift/do cardio 4-5 days a week, but my waist line wasn't improving & was a bit of a struggle. So I told the Doc this but also I thought maybe it's just because I'm getting older (41) and just quit smoking in March. I figured my metabolism hasn't reach normal levels yet.

After blood work which was drawn 1 day before my AF, FSH 7.1/LH 7.6 ratio and progesterone was low 3.1 versus 15. Hopefully, if I do have this 100%, I am a more "mild" case. For woman who do not want children, it is a little difficult for true diagnosis because infertility is a big sign and I don't have that indicator to check.

I'm going in for more blood work soon, so hopefully I can get more answers. I wondered if anyone was in the same situation and actually found out their problem was not PCOS but something else. I do feel great right now so I'm probably better not to rock the boat.

Oh thats good well im glad its worked for you

Thanks Kat! I'm going to ask him about that during my next appt. I was also talking, yet again, to the DH about these symptoms that I don't have. He reminded me about my hair loss. I do have to swipe up off the bathroom floor what looks to be a small Chia Pet of my hair at least 2x/week. I guess it's easy to "ignore" these symptoms and trying to somehow will myself from not having PCOS.

I do not have bald spots, but my hair has gotten really thin. I guess I need to get out of the denial stage and just focus on living with this. Thanks to all of you here-it's really helped me to know I'm not alone.

MIA ~
I hope you don't have PCOS. Good luck.
JEN

I also went to the doc with severe PMDD, it's that or I am going nuts.
I have the Yaz that I start for PMDD this Sunday but I really think I have PCOS. I have SO many symptoms but I don't want to self-diagnose myself. I just don't have cysts or facial hair.

Has your doctor checked your thyroid? I am hypothyroid and many of the symptoms I have with it are the same as those with PCOS. Sometimes, I wonder if they go hand in hand. The hair loss is a big indicator of hypothyroidism. You may want to look into that.

I was diagnosed in 1999 when I was 22 and missed my period for 6 months- had other stuff like acne and lots of hair and my ovaries were full of follicles and swollen to double their size. No weight problems though- that came when they put me on the pill to regulate my periods- In the last six years I have gained almost 20 kilos, and tried three different pills.

I've been on Yasmin for 3 years and started having problems ( melasma and spotting) and they did a scan before changing my pill. Now turns out that I have just 7 or 8 follicles and so they can't make a conclusive diagnosis. My blood work has always been normal.

So do I have PCOS or don't I? I feel it is Yasmin that is hiding the symptoms and it will all blow up again as soon as I stop. But the gynaec didn't seem to think so- he looked so smug as he told me that my struggle to lose weight and my irregular periods were obviously something else. And that I should try to control my weight through my diet if exercise wasn't working.

Anyway, I am off all meds now waiting to see what happens- has anyone else been through this? Would appreciate any information.