clk1972

Hello there,

I'm 36 and was diagnosed with PCOS in 1999 by an awesome Dr in Milwaukee. Then I moved to Madison that same year and had to reestablish care, where I went through a series of Dr's that undiagnosed me, re-diagnosed me, diagnosed me as a possible "maybe you have it, but you shouldn't really be that concerned if you do or don't" where after 7 years of complete and utter frustration, decided that I will just assume I don't have PCOS.

Currently however, after a very challenging (and rigorous) battle with losing weight (20lbs) and eating healthy this past year, I found out last week that ALL my good cholesterol went down and all my bad cholesterol WENT UP! So then my new Dr ordered a 2 hour glucose test and I am currently waiting on the results. I have since changed healthcare systems again (but for the better) and really trust my current Dr, and she knows my level of frustration regarding this issue, as I had made it QUITE clear. She said this time rather than revisit all the PCOS testing again, we'll start with the symptoms and go from there. Number one being my insulin levels. Then the cholesterol.

I'm not interested in having children which is another reason my previous Dr's told me "not to worry about it one way or another", though I was, and remain, about 60LBS overweight, have high blood pressure, acne, facial hair, depression and severe anxiety attacks, have had a history of irregular periods (along with incredibly painful ones).

But with all of that, I investigated acupuncture and Chinese medicine about 3 years ago, because I was seriously at my wits end. And to a large degree has helped a ton!

I was on the low carb diet for a while and then my cholesterol went up at that time, but Im not opposed to going on it again. Depending on how the insulin tests go, she is not opposed to putting me on Metformin (like my other Dr's were) which is cool.

I just needed a place to vent because Im so fed up with having to figure out which piece (or pieces) of information to give Dr's so that they will want to investigate further---in case this is something that is important. I already come from a long line of family members that have heart problems, and thought I was thwarting that same fate by substituting soy for redmeat and dairy, exercising, cutting calories and making other healthy choices. Its such a bummer to work really hard at it all, and end up getting worse, rather than better. Growl.

Thank you for reading. I have been reading so many similar stories here and though its sad to read that others are having a frustrating time with it all, its so wonderful that this community is here, knowing I am not alone.

Thank you so much!
~carol

OntarioCyster

Hi Carol,
You're definitely not alone! We've all got different stories but can definitely relate to each other!
I'm newly confirmed to have PCOS (although past test should have been enough, my doctor was clueless!!)
I'm sorry you've had such a frustrating time with your past doctors, I've been there and it sucks! I hope your new doctor is able to give you some relief from your symptoms.
Have you been given the typical PCOS blood tests and abdominal/transvaginal ultrasound?
A good link recommended by another poster helped me figure out which blood tests to ask my doctor for:
inciid dot org in the FAQ section (can't post the link here since I don't have 5 posts yet, hope this gets you to the right site! otherwise type in PSOC blood tests into Google search.)
It's a lot of info, but scroll through if you're interested!
An author I've seen mentioned a lot on this forum is Colette Harris, I recently ordered one of her books off the Chapters website, it's called The Ultimate PCOS handbook & has a lot of good general info in it.
I'm eating the low carb, really low sugar diet right now and it seems to be agreeing with my body. Lots of low fat dairy, organic eggs, almonds, some lentil and other complex cards here and there (like brown rice bread since I can't eat wheat). Lots of veggies and limiting my fruit since it has a lot of natural sugar in it.
One bit of advice I have about the soy you were eating, which may have explained how your body reacted to it, is soy contains natural estrogens. For some people this is ok, but for others (like myself) the phytoestrogens can cause a lot of problems (for me it really made my cystic breasts painful, so I only eat about 1 serving a week now).
A common trait some PCOS women have is called estrogen dominance, if you have that you certainly don't want to be eating a lot of foods (like soy) that are estrogenic. Estrogen dominance is usually accompanied by low progesterone, and that can cause A LOT of the common PCOS symptoms. Have your dr. run a full hormonal, blood glucose & cholesterol check on you, even if you've had them done before, it can't hurt to compare results! Ultrasound is so important too!

Best of luck with your health, hang in there!

-Sue

clk1972

I would sincerely like to thank you for taking the time to send such a lengthy and thoughtful reply with TONS of helpful tidbits! It was very encouraging to read that this morning. With this Dr, I have not "reopened" the full testing of PCOS yet, mainly because I am self employed and we pay for our own insurance, but depending on what the glucose tolerance test results bring, it will be something I plan on bringing up again.

The soy info was especially helpful, since this year was the year I switched to soy, and have seen the most problems. D*mned if you do d*mned if you don't it seems! But this, and the author you listed is incredibly helpful and I thank you!

~carol

OntarioCyster

Well, glad to be of help I'm certainly not an expert, but I've had various health issues since I was a teenager and have found the best way to deal with them is to read whatever I can and try to make sense of things! Knowledge is power, and when it feels like something (PCOS!!) is starting to take over, you really have to fight back and try to be as healthy as possible & reduce symptoms. Believe me there are many times during the day I feel discouraged (like when I lose a ton of hair in the shower!) but all I can really do is figure out what is working for other people with the same symptoms and see if I can apply any of it to myself. The hair loss is something so depressing to a lot of us with PCOS & it's something I've been researching a lot. I've switched to a biotin shampoo and I make sure to wash my hair everyday since I heard any oil on the scalp can actually make the hair-loss worse, and I'm trying to treat it from the inside out with 8000mg of biotin supplement a day along with a selenium (yeast free) supplement. I'm going to start taking saw palmetto and vitex too, but I'm waiting for blood tests later in the month (so I don't skew my results).
I'm further into that Colette Harris book I mentioned and it has some info about estrogen dominance too. I also did some more online reading about it and apparently coffee is also a no no. On the other hand mint tea and green tea are both supposed to be beneficial for hormone regulation.
The research area of this site has so many great articles to check out, they're really good about posting the latest studies, research and theories. It's nice to know people are working on the problem!
I hope your glucose test gives you some results you can work with. I'll be getting the same test next month (since my regular glucose fasting test didn't show anything, but why would it since in that test my body had no food sugar to deal with!) I've basically been eating like a diabetic these past couple of months & it's clearing up some of my skin issues. Acne was one of the first things to tip me off that something was up since I'd never been acne prone before. Changing my diet, using proactive solution (there is another similar and less expensive set of products in the states, I think it's called Acne Free? but they don't sell it here in Canada). Something inexpensive I use to heal pimples at night is Penaten Cream, it's the 18% zinc cream in the blue tins people put on baby butts for diaper rash! Kind of gooey but it works & also stops them from scarring.
Take care and stay hopeful

clk1972

Again, excellent insight and I really thank you for sharing it! I feel like a crazy woman lately....

My glucose test came back "normal" (90 fasting and 114 after they gave me the cola) and then no further word from my Dr about what to do about my current high cholesterol. Maybe that is to come. Dunno.

So, even though one would be "happy" for the good glucose news, I was a tad irritated, and called to locate a Dr within my system who specializes in PCOS (my current Dr is Internal Medicine, not an Endo or ObGyn)

I got through on Friday to a very good nurse who asked me all the right PCOS questions (FINALLY!) including if I have ever had an ultrasound to which I replied NO (even though I asked repeatedly for years at my old health care system) so I feel I will be getting one of those too.

I was assured this new Dr sees A LOT of PCOS patients. So I have an appointment with her in a couple weeks. So one way or another I am going to get to the bottom of: Do I have PCOS or don't I?

Thank you again for all your encouragement. It means so much!
-carol