Anyone else have PCOS here?

[bedillamouse]

Hi...I've had PCOS (polycystic ovary syndrome) for quite a while but am just now learning all there is to know about this stuff. I am very disappointed in the lack of information that all of my doctors seem to either know or share. I found a terrific book that explains so much and explains how PCOS isn't just about having difficulty getting pregnant or missed periods. I am struggling to find a doctor who either really knows about PCOS or will work with me on this. I get a lot of well you're done having kids so ???? Or no these symptoms can't be related to your hormones.

Just wondering if anyone else is having these issues with their doctors or if anyone has a great doctor that works with them. And also maybe just some fellow women out there who are dealing with this stuff and can understand what I am going through.

 

[Alphabetsoup]

I was dx with it years ago. I don't know where you are looking, but there is a TON of information on the internet about it. I have never had any problem researching the condition, treatments and more complex medical articles about it (academic journal articles).

Heck, when I was diagnosed with PCOS I was also diagnosed with a type of 'pre-cancer' -- and within 20 minutes I had my hands on 4 medical journal articles about the combined conditions.

If all you want is basic information, there are some good books. If you want support try: www.soulcysters.com - they have good information, links and a great discussion forum.

PCOS is not the end of the world. Hell, I was told by three gynos to go ahead and a have a hysterectomy due to the pre-cancer (not the PCOS) because I would "NEVER" be able to have kids without extensive medical intervention. UM...NOPE! I did a bit of research about supplements and we tried for ONE MONTH and I got pregnant (I'm due June 19th).

The biggest issues women with PCOS seem to have is hair in unwanted places (I *HATE* my beard! *sigh* Okay, it isn't quite that bad, but I have to wax my chin and under it every few days), it is very hard to lose weight (usually due to insulin resistance), high cholesteral, and higher chance of diabetes and heart disease. Also, if your periods are not coming regularly (I went for close to 12 months without a regular period once) you are at a greater chance for some types of endometrial cancers (that is what my pre-cancer was).

As to doctors...you are right, many don't know diddly squat about PCOS. Some don't believe the condition exists and others think it is something that only needs to be addressed if you are trying to get pregnant. When it comes to doctors, you'll just have to search around and do your homework in the academic journals so you can be an advocate for your own treatment.

Treatment is usually diet, exercise, insulin sensitizers (I take Metformin to help with my insulin issues and it does help me lose weight, but not like a diet drug), drugs for hair issues and excess testosterone. Sometimes they put women on hormonal birth control pills....but I can't take those due to blood pressure issues and my age.

 

[bedillamouse]

sorry if my post was vague...I appreciate the link to the support site. I did not know about that. I guess I was referring to the frustration of the doctors lack of knowledge. What I was unknowledgable about was the other stuff. Like migraines can be linked to PCOS...that depression issues or "mental health" should not be assumed until good hormone test are given first....that some anti depression meds if you have PCOS can cause an increase craving of carbs. That craving carbs is a normal side effect of PCOS and some others.

I knew that mising periods was "normal"....infertility is common...it's harder to loose weight...increased chance of diabetes is normal... and the hateful extra hair! ...etc.

I am frustrated that another doctor has told me I just need to exercise more and eat less. Heck I just had a doctor tell me if I really just put my mind to it I should just do a 1000 calorie diet to really loose some weight...the info I found on PCOS says trying to do a very low calorie diet will produce the opposite effect and your body will think it's starving and stop slow down the loosing process...I am frustrated my doctors are not listening to what I have found. I understand about self advocating but it just gets frustrating and when I find out more and more about other treatment options ...other than just metaform and the doctors just dismiss it because I am not medically trained is frustrating.

Thanks for posting and sharing. I will check out that website you gave me.

 

[momof3poohlovers]

I am 41 and was diagnosed with PCOS at about age 24 when I tried to get pregnant with my second child. I have also found it very frustrating with doctors along the way as well. There was no internet then or at least I wasn't on it and I had no clue what PCOS was except that I was having a hard time getting pregnant because of it. I had to take fertility drugs to get pregnant with my 2nd and 3rd children. I actually had a doctor tell me that he would not prescribe me Metformin (after I read online that it could help me so I asked him about it) because I was about 30 lbs. overweight and it can allow you to get pregnant easier and he wasn't going to help me get pregnant until I lost the 30 lbs. I finally found a doctor who listened to me. I ended up gaining about 50 lbs. after having DS and I explained to the doctor that despite trying to lose weight, I honestly couldn't get it off. He explained the insulin resistance to me and started me on Metformin. I lost 55 lbs. in less than a year doing nothing different than I had been doing before. The only thing I changed is the Metformin.

Thankfully we have the internet now and can be so much more informed so that we can hopefully advocate for ourselves more effectively. Try seeing a endocrinologist. I have heard that they are usually better at treating PCOS than family doctors or GYN's. Luckily my OB/GYN is pretty educated on it and has been very helpful. I agree with you, I don't think people who don't have PCOS really understand how hard it is to deal with the nasty facial hair and the weight issues. I really hope that in the future they can come up with something to help with these things. Good luck!

 

[davidsprincess]

I was diagnosed in my early 20's with PCOS after YEARS of having problems with my periods. Doctors had even told me that when I was 18 everything would even out and I would be "normal" Anyways, even after I was finally diagnosed I wasn't given any help until 26. By this point I was having hot flashes and very few periods. So much for the magic age of 18 theory. My Dsis-in-law then found a hormone doctor for herself and suggested I see her too. It was amazing how she was able to help. She first started a ton of blood work. I would go at different times of the month to have hormone work done to check levels. Low and behold I had none!! Except all of that good ol' testosterone! For years the othe doctors had said that all of my hormones were in the normal range! Imagine what going at the right times of the month will tell you. I did have to eventually go on a hormone replacement for a few days out of every month, but it did help with regularity and now I don't even need it. The side result of the hormone replacement therapy is a now 5 yr old little munchkin. She is a nice bonus considering I never went to the doctor because I wanted to get pregnant, I just wanted help with my hormones.
I still struggle with weight, but find that if I can do low carb than I feel lots better. It is just hard because those darn carbs can find me and then when I have them it is almost like a drug. I can't stop once I start. As far as the hair, well, I wish it would STOP growing in some places and START in others.