[knobhdy]

My doctor decided this winter that I have PCOS. She based her opinion on my really wonky period schedule, (often ever two months, occasionally once a month, and once twice a month), and the hair growing on my face and back (icky!)
But I keep getting tested for hormones imbalances (none) and blood sugar levels (fine).
I kinda feel like my doctor is just making things up. She proscribed birth control, which I can't take cause it makes me nauseous and also kills my amousous intentions towards the BF, so to speak.
So basically I have a disease I can't be tested for and a treatment I can't take.
I feel deeply frustrated...

[junebug41]

I have pcos. My glucose and hormones are totally normal if I keep my weight down. My only symptom after that are the "string of pearl" cysts and irregular periods.

There's a whole list of symptoms associated with pcos and you can some, all, or barely any. It's very finicky in its diagnosis.

Did she give you any other indication as to how she came to the diagnosis?

[knobhdy]

Originally Posted by junebug41

Did she give you any other indication as to how she came to the diagnosis?

She seemed to decide based on the periods. I haven't had two normal cycles in a row in several years.

Do you have any suggestions for other treatment methods I can ask my doctor about?

[junebug41]

I think the treatment depends on the symptoms, and in your case that's irregular periods. The standard rx for that is birth control and weightloss. Some doctors will also prescribe Metformin (a diabetes med because there is a strong link between insulin resistance and pcos).

Some people do not react well to birth control, but I loved it. I went off of it in October and I miss it terribly. You could try a bcp that has a lower dose of hormones. That may not affect you so negatively.

[Gelene]

knobhdy, I also have PCOS. I found this site Soul Cysters years ago and it has helped me to find and get answers for a lot of my concerns and worries. Here is the link if you want to check it out.
http://www.soulcysters.com/

[beerab]

There are so many more symptoms of PCOS than the few you have mentioned.

http://www.womenshealth.gov/faq/poly...y-syndrome.cfm

-infrequent menstrual periods, no menstrual periods, and/or irregular bleeding
-infertility (not able to get pregnant) because of not ovulating
increased hair growth on the face, chest, stomach, back, thumbs, or toes—a condition called hirsutism (HER-suh-tiz-um)
-ovarian cysts
-acne, oily skin, or dandruff
-weight gain or obesity, usually carrying extra weight around the waist
insulin resistance or type 2 diabetes
-high cholesterol
-high blood pressure
-male-pattern baldness or thinning hair
-patches of thickened and dark brown or black skin on the neck, arms, breasts, or thighs
-skin tags, or tiny excess flaps of skin in the armpits or neck area
-pelvic pain
-anxiety or depression due to appearance and/or infertility
-sleep apnea—excessive snoring and times when breathing stops while asleep

I have many of these symptoms and am pretty sure if I tried to get pregnant it wouldn't happen.

That being said my glucose levels are always normal at fasting but my testosterone is high. My friend who has PCOS has insanely high glucose levels at fasting (like 130+) but hormone levels are fine.

The thing also with hormone levels the tests are NOT that great- I remember reading a study once where samples were taken from a patient at one time- sent to different labs, and they all got different readings... go figure.

Do any of the above apply to you?

As for the birth control don't just try one, change birth control pills, I take Aviane and it's worked for me- this is like my third set before I found one that didn't make me feel bad. And also if you JUST started on the pill a lot of times the first 1-3 months as you adjust you can feel nauseous and/or lack of sex drive. The first pill I took made me so sick I thought I was pregnant!

What about metformin and spironolactone? Has she discussed these options with you? Does she work with a lot of PCOS patients? You might need to find a specialist because many doctors don't even KNOW what they are doing when it comes to PCOS. My first doctor who diagnosed me didn't know much and I basically was left untreated for years- after I blew up over 40 lbs with no help but "lose weight" I changed doctors.

While there is no specific test for PCOS- there is a process of elimination, I was tested for thyroid and other things before I was given a diagnosis of PCOS.

Sadly the best thing for PCOS is to lose weight- pretty much all research I have done points to a lower carb diet- and it's the only thing that has worked for me.

[Gelene]

Me again. I also had to go through about 6-8 different birth controls till I found the one for me. Also my Dr. told me to take it at bedtime and this totally took away the "morning sickness" thing.

[knobhdy]

Thanks for the advice ladies. I will definitely check out those links.

I have been on just about every birth control method available (high dose pills, low dose pills, shots, etc.) over the last 15 years, as I tried to find a good way to prevent pregnancy. I had negative reactions to all of them, including ending some relationships because he couldn't deal with me not wanting to be touched.

I am trying to lose weight already (why else would I be here ), so maybe this will all work itself out on its own. I definitely have the excess weight around the waist thing, and it really bites. Fortunately, blood pressure, cholesterol, and blood sugar levels are all low.

I live in a very small town and I go to the only doctor around. I suspect she doesn't see too many of these cases. Perhaps I will go see a specialist....

[beerab]

I agree- find a specialist and if the BC doesn't work for you then I suggest asking to at LEAST get on metformin and spironolactone. I wasted years on a doctor who had no clue what to do but instead of being honest and admitting it she kept "treating" me when she should have referred me to someone else.

Definitely read around online- I learned so much that way- which is why I finally decided to go the low carb route.

[kuchick]

Hi. I'm new here, too. I have been diagnosed with PCOS, but not because of ovarian cysts as the name implies (I think that's why some are calling it Syndrome X because not all will get the cysts that this was initially named for). I am insulin resistant though and had a hard time getting pregnant initially also. The insulin resistance doesn't show up in a simple blood glucose test though. My blood sugar levels are always normal in a fasting test. What happens is that the amount of insulin required to keep my blood sugar levels normal is a lot more than in "normal" people. I had to take the 3-hour test where I drank the sugar drink and had my blood drawn every hour to monitor blood sugar and insulin levels. Anyway, my point is that having normal hormone levels and fasting glucose doesn't really mean that you don't have PCOS. You should probably see an endocrinologist to have more testing done. Plus, he/she would know treatments that could help you.

As for the BCP problems, I'm sorry that you're having that problem. I know that I read long ago that women with PCOS shouldn't take certain BCPs, but I can't remember exactly why. It said that women with PCOS should only take monophasic birth control (estrogen progestin stays the same in all the pills vs increasing halfway through the month). I don't know if that is still true or if it has been disproven though.

[MandiAltman]

I'm a little late on this, just thought I'd put in my 2 cents...
I know the menstal issues can be super frusterating. If you're not trying to get pregnant, birth control is the best option to regulate periods. There are so many diffrent kinds out there, you just need to find the right one for you. Best of luck!

[knobhdy]

So I have an appointment with an endocrinologist on Monday. I am pretty excited to see if a difference can be made with my symptoms.
I have lost 28 pounds in the last year, and the acne and hair growth are getting worse!!

Thanks for all the support ladies; Wish me luck.