A little background here... I was diagnosed with PCOS 12 years ago when I was 14 by a gynecologist. I have been on birth control since there which has managed to keep my cycles regular for the most part. I never took my PCOS seriously till I gained about 20lbs overnight have no been able to lose it for the past 4 years.

So I went to an endocrinologist a few weeks ago and he ordered some tests. He wanted to check my insulin response & thyroid levels, and they both came out normal. So now he claims that I do not have PCOS and refused to prescribe metfromin.

Now I am really confused. Do I or do I not have PCOS? Should I go to a different doctor have them run different set of tests on me?

I was diagnosed as having PCOS at age 17, when I too gained about 20 pounds or so fairly quickly and had experienced excessive facial hair growth. I was on birth control pills for about a decade, over which time I gradually lost the excess weight, getting down to around 150 pounds. I was concerned about being on The Pill for that long, and stopped taking it 4 years ago (I am now 33). With a pretty strict regimen of exercise and calorie restriction, I have managed to break through what I had always thought was a "set point" weight for me and now weigh under 140.
I believe my hormones have sort of regulated themselves over the course of time, and my weight loss definitely aided me in this. PCOS is frustrating for many reasons, not the least of which is that it often causes weight gain, yet losing weight helps diminish the symptoms!
Clinically, is your PCOS resolved? One can't ever tell, as there's not a definitive test for it. Can PCOS become so "in check" that it's no longer noticeable? For me, yes.
I hope this helps...

Well, I need to stay on birth control right now because my husband & I are not ready to have kids yet. And the doctor said that he can't test my hormone levels as long as I am on the birth control. He also said that my period might be irregular because my hypothalamus might be out of whack, and this might either end up regulating itself or I might just have irregular cycles for the rest of my life.

I am just so confused right now because I believed that I had pcos for almost half my life.

Fatburner, what do you mean by "Clinically, is your PCOS resolved?" How can the doctors test it?

2nd opinion wouldn't hurt. PCOS manifests in at least 5 different ways.

• traditional PCOS -- anovulatory, increased androgens, no insulin resistance
  
• endocrine syndrome X -- anovulatory, increased androgens, insulin resistance or type 2 diabetes
  
• non-traditional PCOS --anovulatory, normal androgens, obese, insulin resistant or type 2 diabetes
  
• non-traditional PCOS -- ovulatory, increased androgens, mild insulin resistance
  
• idiopathic hirsutism -- ovulatory, increased androgens, no insulin resistance

Might check the teen guide too. Basic info nicely presented so I still like pointing adults there.

http://www.youngwomenshealth.org/pcosinfo.html

And the inciid faq is good for explaining tests.

http://www.inciid.org/faq.php?cat=infertility101&id=2

GL!
A.

Ah - sorry, I had been posing a rhetorical question when I asked, "Clinically, is your PCOS resolved?" because there is no true means of being able to tell. I, too, thought I had PCOS for much of my life. My main point here is that I've been successful in reducing (through diet, exercise, and hormone regulation) the symptoms greatly, to the point where I don't "appear" to have it any more (although, because I've never attempted to conceive, I don't know if I'll encounter any problems in that aspect).
In my previous post, I alluded to the fact that I had been interested in getting put on metformin when I weighed ~165. I just felt I was doing everything right and not losing weight. It took some time, but I realized I was fooling myself. Now, I'm not saying this is what you're doing at all -- but I can relate to the feeling of rapid weight gain and feeling as if it was out of my control. I used my diagnosis as a crutch, and for several years just figured I'd always look pudgy and bloated.
It wasn't until I took up running a few years ago that I started seeing a difference. I also limited my caloric intake to about 1250 per day, and took a 3-mile run 6 days per week. This worked tremendously! It's as if my body chemistry began to change, and I've turned into something of an athlete. To this day I don't consume much more than 1500 calories per day.
At any rate, go and get a second opinion. It can't hurt.

Thanks for the post fatburner, it really helped me a lot because I am pretty much in the same situation.

I am not really sure about my fertility too because I am not interested in having kids right now or in the near future. I do restrict my calories to around 1200-1400 and workout everyday, I usually end up plateauing around 140 at which point I give up and put all the weight back on. I guess I will just up my excercise routine and see if it helps me any.

Again, thanks for taking the time to post.

PCOS is a tricky syndrom to diagnose and treat effectively. This is because PCOS affects every woman differently.

As an example, my testosterone levels are three times what they should be, but my glucose and thyroid levels are normal. My cycles are still normal, too. That doesn't mean I don't have PCOS. I also gained 20 pounds (more like 50) overnight. I struggle with unwanted hair and painful cyst ruptures.

Blood work is only one in a series of non-intrusive tests. I would highly recommend after reading your post to look for another doctor. I don't mean to sound cruel, or to suggest that this doctor hasn't any idea what s/he is doing, but a diagnoses is not present with only a blood test.

I would highly recommend you get a transvaginal ultrasound to look for the presence of cycts. They form around the ovary like 'a chain of pearls." A simple pelvic ultrasound is not effective enough.

Also, even though I do not have IR (insulin resistance) I take Metformin (500mg/ twice a day). Metformin is very effective for women with PCOS. It stimulates ovulation, regulates ones menstrual cycles (to some point), is beneficial (from what I have been told) in preventing IR.

I am sorry you've sought medical attention and was left feeling confused. The only real suggestion I hope to leave you with is: If it doesn't feel right, seek a second opinion. That never hurts matters.

Thanks astrophe, I am not sure how I missed your post. Mine sounds more llike traditional PCOS. Other than facial hair growth, irregular periods and 20lbs gain overnight, I have no other pcos symptoms. Thanks for the links.

dreilly, I am looking for a doctor for a 2nd opinion. Most of the PCOS experts here in my city work at IVF and fertility clinics and I am really not interested in fertility issues right now. Does the metformin help you even though you dont have IR?

Definitely. Metformin is great for me in reducing unnecessary bloating. I know that sounds really strange, but I hold a lot of water retention around my tummy, and more so when I'm due for my period. Metformin has also been good in regulating my period because it does stimulate ovulation (but unlike Clomid, not multiple ovulations per month). Using Metformin with a proper workout routine and proper meals, has been a great benefit for me.

UPDATE!!!

My obgyn pressured me into switching from otheo-evra (the patch) to the nuvaring a few months ago, since nuvaring has a lower dose of hormones and so it is safer than the patch.

• Since Jan, my pcos symptoms came back full on. I had gone down to 142 lbs and managed to get up to 150lbs within 2 weeks on a 1200 calorie diet.
• Oily face with enlarged pores on my face. Acne on my butt and it was so bad that I have trouble sitting down some days. For some reason, I never get acne on my face, but get it on my back and butt instead.
• New facial hair growth, even though I get them lasered.
• Hair loss

I came to the conclusion that the nuvaring is not masking my symptoms as well as the orthoevra because of the lower dose of hormones. So last week, I went and saw a reproductive endocrinologist. He seemed very knowledgeable about PCOS and explained that being on BC for PCOS is like drinking cough syrup for a cold.

He checked my thyroid and said that it was way too enlarged and ordered my a blood test to check my tsh levels again. He also told me to stop using the nuvaring and chart my basal body temp to see if I ovulate naturally without BC this month.

I have my next appointment with him in a month and he wanted to check my estrogen & androgen levels once the BC hormones subside.

Ladies, do you have an suggestions on questions that I should be asking him?

Yes. How to manage menses then? Because if not on something BC-like... is it going to be Provera every so often to bring it on? Metformin? What?

We need to shed that lining. If you are like me and NEVER get a period on your own, something has to happen to make it be so. The uterus is supposed to be self cleaning in that regard and if we are not menstruating, what's the risk for cancel cells?

As well as the Birth control plan for...well birth control. What are the best options/solution in your case?

What's your long term management plan to be? For instance, I see my endoc every 3 to 4 mos for new labs to see how my hypothyroid/PCOS stuff is doing.

I'm sure there's other questions.

GL!
A.

Nina,

I would be the asking the following:

- I don't want to mask my PCOS symptoms, how can I treat them? (If your hormones are out of whack, then what can he prescribe or suggest that you do to manage the imbalance)

- How often will I be getting bloodwork/tests done?

- What are the possible long-term effects of the drugs/treatment that you are suggesting?

- How will diet/exercise affect my symptoms?

I hope that helps.

Thanks Astrophe & Rana. My next appointment is in 3 weeks, I will keep you guys updated and come back with more questions.

I have another update..

My endocrinologist suggested I go a dexamethasone supression test to see if my androgens were being produced by my adrenal gland or ovaries. It turns out that my excess DHEA-S is produced from my adrenal gland and testostrone produced by my ovaries.

The endo claims that you can "train" your adrenal gland to produce less DHEA-S, and so he has me on a very low dose of dexamethasone for the next 6 weeks, and then I have to go back for another panel of blood tests. If this is successful, then he will put me on birth control to supress the testostrone from the ovaries.

My insulin sensitivity was 0.34 with 0.35 being the limit. Also, my liver enzymes tested to be very high. Needless to say, I am very worried about this.

What are the implications of this? I know it's not healthy, but I don't know what it means for you.

I didn't know BCP suppressed testosterone, I thought it simply balanced out the levels of estrogen/progesterone in comparison to testosterone.