[vancouver]

Hi everyone,

I'm new at this whole forum thing...I've never really talked to anyone about my PCOS. I'm 22 years old, I was diagnosed when I was 16. The specialist basically told me and that's it..they didn't explain it to me at all, so I have gone off of my research. I kind of feel like I'm stranded on a deserted island, just completely alone. My symptoms have recently begun getting worse, the stress in my life has also gotten worse. I am by no means obese, I am considered "average". I'm a full-time student, I work 24 hours a week and I live on my own away from my family. I haven't had a regular period since August 2011, my doctor put me on progesterone for 10 days in January, I got my period then but haven't had it since. My bodily hair growth has gotten so much worse, it's heavy on me mentally..I feel like I'm turning into a man. I am not on any medication for PCOS, I am on minocycline for cystic acne on my chin.

I was just wondering what your thoughts and experiences have been with birth control? How has it affected your symptoms (negatively/positively)? (I have been on it in the past, but was getting terrible headaches and had to stop...but I am back to square one again because it's just getting out of control)

What other measures do you take to keep your PCOS symptoms to a minimum? Did you cut out/down on any foods?

What did you find most beneficial in weight loss? (what types of exercises, foods, cutting out of anything etc) I realize everyone has a different body that will react differently, but any tips are appreciated.

I come here with only kindness and openness, and hope you do the same. I am not looking for pity, just help and advice from one woman to another.

[lovemydoggiesx2]

Hi, and Welcome from a fellow girl with PCOS. I found out 10 years ago after I had a cyst rupture. I never took birth control to regulate my perios, but I did try Metformin for a few years. I hated it and it just made me sick. I also have cystic acne (Im 31 and HATE it!!) and hair growth where it shouldnt be. The hair growth can be solved easily by waxing. I wax my tummy, neck, chin and upper lip.

With our condition diet and exercise is the keep to keeping it under control. I like many others am insulin resistant, and I have to have a diet very low in carbs and sugar (our body turns those carbs into sugar and stores them making our problem worse). Following the low GI diet is what a lot of us do, and what a lot of doctors recommend.

I know you are young, but infertility is a big struggle with this also. I have been trying for almost 10 years with no luck, and have done everything under the moon. You should try to regulate your periods. I know it is nice to not get them, but you need to. I think at least every couple months. If you have no baby plans in your near future I think you should consider going to the pill, as it will regulate you by tricking your body. It is just healthier and can prevent cancer.

So good luck, I know there is so much to learn on how to manage this problem, and sometimes it is so frustrating and unfair. But, remember there is a really good support group here when you need people to talk to.

[Rana]

There are a ton of books out there that you can read that can give you an overall picture of what's going on in your body!

What kind of specialist are you going to? Usually reproductive endocrinologists tend to explain everything to you -- at least mine does and he makes me feel like I'm an idiot because he goes into so much detail that I already know! -- and even if it's not the case, then you should try to find one that does.

You need to be able to trust your doctor somewhat!

Anyway, back to the information you're looking for:

- Read! Read the articles here, read the posts here, and read the books like "A Patient's Guide to PCOS" or the "Savvy Woman's Guide to PCOS" as these types of books will explain what PCOS is, the different treatments for it, and where you should start

- If you have insulin resistance (and you may not!) eating low crappy carbs (i.e. cookies, cakes, white rice, candy, etc.) is probably the best way to go. What I find in my own case is that I have to be very clean in what I eat and on the lower side of calories in order to make it work for weight loss. I'm currently on a plateau because I don't want to eliminate more calories yet. I'm just playing around with the macros (40% carbs, 30% fats, 30% protein of my total calories per day -- 1650 set by my nutritionist).

- Exercise, it's always good, but you don't have to kill yourself.

- Food wise, the mistake I make all the time is that I eat within my calories, but I don't eat healthy. I have to be vigilant about getting enough vegetables and fruits. Don't worry about whether you're eating enough carbs, you always are! It's the fruits and vegetables that are tricky for me.

- BCP "masked" my PCOS symptoms. That's the first thing the doctors who diagnosed me gave me. But it doesn't cure PCOS. Yasmin/Yaz have an ingredient that can help you with the hair growth, but there is controversy over the usage of that BCP, because it's been linked to strokes in some women. Please note -- BCP may be the only option, for you, but to me, it wasn't. BCP can also increase your insulin resistant, give you gallbladder issues, and make it hard to lose weight. I stopped taking them because I wanted to deal with PCOS head-on, no masking of the hormones.

- Your acne is probably from an imbalance of male hormones. If you get the rest of your stuff in place, you can find that it begins to get better because your body begins to response better to the treatment (exercise, diet, and other drugs)

- Excess hair growth is a sign of the above too. There are medications that can treat it, like spirolactone, but they carry some side-effects for fetus/newborns, so make sure you're not going to get pregnant if you use it!

- Also, consider alternative supplements and vitamins. A lot of women who have PCOS have a deficiency in B vitamins (some think because of the Metformin usage, others because it's part of the family of metabolic syndrome), Vitamin D (which is so important for so many things), and magnesium.

Mary's PCOS FAQ is a great resource of what can work/not work for you.

Finally, it's just going to be a process of trial and error. Some things will work for you, others won't, but don't ever get discouraged!

[turboturtle80]

Hi. One thing I'd say is stay far from BCP if you ever plan to have kids. I'd research it heavily. PCOS is a hormone imbalance as well and when you start suppressing those hormones for long periods of time you can risk your fertility. I took the depo shot for years and now that I read about it, it may have been a huge part in my fertility issues.

The best thing you can do is stick to a low gi diet and exercise regularly. I've gone as far a only eating a completely organic diet and using only organic products around me. I know being a student its expensive to do all that, but maybe it can be one of your goals. Good luck sweetie.

[Raven132]

Whatever you do, don't get the depo shot! It screwed with my body and mind so bad I thought I might go crazy.

Paleo is the only thing that works for me. No dairy, grains, sugar or legumes. Lots of meat and veggies, unprocessed, whole foods. Deviating results in weight gain, acne, more body hair, and irregular periods.

[astrophe]

I was just wondering what your thoughts and experiences have been with birth control? How has it affected your symptoms (negatively/positively)?

I got a partial dx at 16 of ammennorhea. I started BCP then.

For me it was helpful for moodiness, period UGH (when I actually would get it it was somethin' FIERCE).

I took breaks here and there over my life. Most notably to have my kid. I did not get the full blown dx of PCOS/IR/hypothyroid til then. I had conceived her within a year of TTC despite 60 day cycles being the best Metformin could get me too.

My experience was positive, but on MONOphasic. Triphasics made me feel horrible -- I already had bopping around hormones. I needed steady not more bopping. I've been on lots of brands over the years but my fav is ortho-cylcen BRAND name. I tried the sprintec, which was ok, but some packs were iffy to me because I had weird break thru bleeding. My doc suggested brandname only and that solved the prob. Bummer because generic is cheaper! But it's the same with my thyroid -- I need brand name on that too.

I am currently on a break from BCP to get a "clean" blood panel to see where my androgens and things are at now. I am feeling it -- a lot more PMS and moody. I'd like to get off it now since I'm 36 and 20 years mostly on it is a long time. But I have to see with my endoc what turns out best.

Check out the BCP article. With PCOS, if this is an option you want to exercise, you want to pick the right type for you. Some are not so hot on the IR and androgen fronts.

What other measures do you take to keep your PCOS symptoms to a minimum? Did you cut out/down on any foods?

I run the gamut between vegan and flexitarian depending on my most pressing need according to labs. Initially I made the move to the veg end of things because I did not have a dx and I reasoned that something was up and reducing my chemical/pesticide/hormone load from foods couldn't hurt. I also kept/keep as green/chemical free a home as possible to reduce my chemical exposure to that. It doesn't have to be hard or expensive, but you do need to think it out some. I rarely see that mentioned in terms of PCOS but I know it matters. Before my full dx I made those changes and it helped.

But veg or not, I go for low-GI whole foods.

Exercise is important -- at my fittest I was vegetarian and exercising 45-60 min 4 days a week.

I also like Mary's PCOS treatment faq -- note that lower carb and exercise are FREE to do and rate 5 stars.

What did you find most beneficial in weight loss? (what types of exercises, foods, cutting out of anything etc)

I know where I need to be for exercise. (See above) And it is a mix of cardio and weight training. I've not been there since my kid was born and it's been years.

I struggle a lot as a family person to keep it all in balance. It was MUCH easier for me as a single student person! The kid reaching school years is a big help -- then I have that time to do it in freely. So I'm working on getting that fitness level back.

Do you know we present in at least 5 types? That and what your current life goals are may shape what you want to explore for treatment options.

HTH!
A.

[vancouver]

Thank you all SO much for the advice and support.

I will look into everything you have all suggested. I really appreciate it.