First of all, welcome. PCOS is a scary disease at first, but once you realize how to treat it properly, it's okay.

Secondly, PLEASE do your research. I have a friend who educates folks online with PCOS. If you write me privately, I'll hook you up with her. You DO NOT NEED TO be on birth control to treat PCOS. PLEASE know that. A lot of docs who are not familiar with the newer ways of treating PCOS want to simply put a bandaid on, and send you on your way. BCP's are a bandaid with PCOS.

Now, some women CHOOSE to take BCP, for whatever reason, That is their right, of course. But it is NOT necessary.

Firstly, you'll have to know your blood levels. What are your FSH/LH ratio? What is your estrogen and testosterone levels? Etc. This is all available online. For instance, here is something that goes over the basics: http://pcos.about.com/od/callingyourdoctor/f/bloodtests.htm

I can find more. I personally have my own notes, but I'd have to type them up for you. Which is difficult with my hands at the moment. Just know it is all online. Soulcysters is a great site, with many PCOSers and many diet/exercise and nutrition links, and all sorts of info there. The PCOSA has a site, pcosupport.org. They are the national foundation for PCOS and they also have a ton of info. There are MANY books, which I have found some at the local library for free. Even being a RN, I knew little about PCOS at first. I've had it about 10 years now.

First line treatments for PCOS are usually metformin. There are whole sections of forums and tons of things online about that subject. Metformin, or "met" as we call it, has many GI side effects. If you can get it, it's best to start on the XL or extended release version of this drug, as it is known to have less GI side effects (nausea, stomach upset), etc. Aldactone or spiro, for short, is another drug common to PCOS. It works on the excess androgens (testosterone) in our bodies. Women normally have testosterone in their bodies, but PCOS women have excess normally, which is what gives us the acne, the hair loss, and on and on.

Let's see....besides drugs, the best thing to combat PCOS is diet and exercise. Fitcysters is a site that goes on that, and I am active there. It is solely for exercise support, and if you go there, there are TONS of info there about exercise and research that proves what types of exercise and how much is ideal for PCOS. Kat Carney is the one who runs that site, and she is AWESOME for knowledge and support.

Basically, most PCOS need to follow a low-glycemic index diet, or low-carb. I choose low-GI, a diet that I made to be more lean meats, fish, and poultry, along with a LOT of high-fiber veggies, some fruit (sticking lowGI is best), and laying off a lot of dairy and refined carbs (stuff like white sugar, white rice, white breads, etc). I choose a fairly strict version of a diet I got from JJ virgin, but...every woman with PCOS needs to choose her own way, and learn by trial and error. There are MANY books available about PCOS and diet, like the Insulin Resistance diet, which is very common among PCOSers. I have tried the IR diet and it is good. I just had some allergies that I needed to find another way to eat as well. PCOS is thought to be caused by insulin resistance, so while you research it, you will find many articles that talk about IR (insulin resistance). IR is basically your body not being able to effectively utilize glucose for energy, thus your body tends to have high glucose levels in the blood and also high insulin levels as your body spurts out more and more insulin to combat the high glucose. The cells in your body need glucose to function. Insulin is like a "key" that allows your cells to use glucose, but in PCOS, that system is off and not working right. This causes weight gain, especially in the middle (which is called "visceral" fat, and is very high-risk for heart disease), as well as a lot of the other symptoms of PCOS.

It was once thought that PCOS was just a "female" or menstrual disturbance, but it is MUCH more than that. You may want to seek out an endocrinologist to treat your PCOS, as PCOS is truly and endocrine disorder, much like diabetes. Women with PCOS are at high risk to develop diabetes if it's not treated correctly. So if you can't find a good OB/GYN knowledgeable in PCOS, you might want to seek out an endo to help you, or even a RE (reproductive endo) to help, if you are going to want children in your future. PCOS can cause infertility (but don't be scared, many of us go on to have children, I did).

You asked about blood clots. Truly, the verdict is still out on blood clots and why women with PCOS tend to have issues with this. It is especially common with women with PCOS trying to conceive. This can have issues with miscarriage due to placental clotting and other issues. This is a whole topic on it's own, and I'm sure I'm already overwhelming you. Many women need to take aspirin or heparin or Lovenox (a low-molecular weight heparin) during pregnancy to guard against clots. I had to do that as well.

So, I'm sure I really just gave you a whole LOT of info to digest. I hope I touched on all of your questions and gave a tiny bit of info as to what PCOS is all about. It is a life-long disease, but it can be successfully managed with a good team of docs and lifestyle modifications. Finding those correct modifications is key, and is a different journey for each of us. PCOS has different symptoms in all of us, and effects us all differently even though it's the same disease. It is really a fascinating subject, to me. Once I beat this cancer, I am hoping to finish my Nurse Practitioner degree and help women with PCOS. That is my life's dream after struggling with miscarriages and infertility without a proper diagnosis.

Anyway, I know you will have lots of questions. I am new to this site, but...I know there are other women here who know all about PCOS and have their own stories and advice. I will tell you now, to get a notebook, or start typing out a document on your computer to keep track of things. Write down your questions for your docs, and write their answers. Keep track of your blood work (ask for a copy of whatever you get, and keep it with your notebook). Basically, keep your own medical chart. You are your best advocate with this disease. You will find many bad reports of docs who think "this is all in our head" or that we are "exaggerating" things, and you may also find a gem who believes you and treats you like a human. It's rough out there. PCOS is still being researched to find better treatments, and such all the time. You will definitely want to keep track of your periods, how long they last. I have found that BBT (basal body temps) help me track my cycle, even though I am not trying to conceive. I use fertility friend to do this for me, but I also keep a paper diary. Many woman with PCOS have irregular and erratic cycles, heavy bleeding, and bad cramps. This is due to our hormonal imbalance. So keeping track of ALL of these things is important. I also track my diet, my foods I eat, my blood sugars, and all my daily symptoms. This has come in handy MANY times, especially when I see a specialist. They can see the human side of this, and it's too easy to forget that maybe 3 months ago I had a particularly bad cycle, or an unusual symptom, or whatever. With the cancer, I lost my memory. Seriously. So, I need to write it all down. I do think that is a good thing for anyone with this type of disease to do, however. It has come in handy many times. You don't need anything special, just a notebook. Start writing things down. Questions, answers you find from docs or your own research, etc.

One last thing, supplements are also a big thing with most PCOSers. Things like cinnamon (which helps control glucose), a good multivitamin, chromium, etc are common ones. I also actually used the Insulite System, which is a special blend of a LOT of herbs and supplements. It got me my periods back, which met didn't do for me. It's expensive though, at 100 bucks a month, but it's not meant for life-long use, just 6 months they recommend. I took it for 4. I loved it. However, that's a whole OTHER topic. Like I said, you could talk about all these aspects forever, really. And I know I have already overloaded this post!!!!!

Let me give you a hug now, and tell you you CAN beat this, and you will get the hand of it all. It's a lot to learn and figure out, but you can do it. The internet has MANY sources of info, so keep researching and learning. Perhaps get a book, from the library if money is a concern. Find support groups online. There are literally TONS of them now. When I first started out with this, there was little out there on this subject. Now it's exploded with the range from traditional treatment (BCP's, etc) which most don't like, all the way to natural/alternative type treatments for PCOS. Most women use a combination of all of these treatments to find what works for them. :)

Feel free to ask me a question if you want, and I'll do my best to answer. I am by no means an expert on this topic, but I do have a bit of knowledge on it from my own.

Start researching, and welcome to the boards! Lots of good people here to learn from and hear from. I love it here so far. Take care and a great big ((((((((((((hug)))))))))))) from me to you!

You do NOT have to be on the BC to treat PCOS. BC helps to control your hormones and the effects of PCOS but you can do this by diet and exercise (weather you are over weight or not...insulin resistance is something many cysters have and exercise is the only found way to reverse the problem) , Metformin, using a progesterone creme, and or other natural treatments. I have problems with blood clots when I am on BC so I don't take it. I use the above that I mentioned and my blood work is great, I am losing weight finally, and I feel great for the first time in a very long time. Researchers are learning more about PCOS all of the time but what you need to do is find a doctor who knows a little more about PCOS and is willing to try other options. There are some docs who know a lot about PCOS and many who know little to nothing about it. It is something that hasn't been studied much until the last 20 years so many paitents know more about it than their doctors. Also, PCOS effects all of us a little different so what works for one woman may not work for you. Like I said before what you need to do is to call around and find a doctor (a reproductive endocrinologist is a way to go even if you aren't looking to start a family) that has worked with PCOS patients and is willing to work with you to find the best treatment plan.
Hope this helps...good luck.

Wow, thanks SO much for all the great info I really appreciate it.

I'm still learning about this whole pcos thing and I don't even have the official diagnosis yet as we are waiting on the blood work to come back and the ultrsound next week. I do find it really scary mostly because of my history of blood clots. I'm glad to know that i don't HAVE to be on birth control to treat it as my doctor told me. The bad thing is that I don't have health insurance so I'm stuck going to the local free/cheap health clinic so my choice of doctors there is very limited.


I do have a question though....can PCOS cause nausea and vomiting? I mean is it a symptom of PCOS? I ask because I've had a lot of neusea and vomiting since I was 4 years old....as in I get sick and vomit about once a month for several days in a row. And it's normally around the time I'm supposed to have my period but most time I have no period show up.

Anyway, I'm still learning about all this so I'm sure I'll have more questions as I learn and when my test results come back. I really appreciate all of your help! Thanks SO very much!

Yes, PCOS can cause nausea/vomiting. it's not a very common symptom, but it can be one. I have it, I know. It's horrid.

I apoligize in advance for my typing, I have my splints on and shouldn't be typing but i had to reply again. :)

have you ever been tested for gluten intolerance or any food allergies? i ask cause there's so many gastrointestinal issues/allergies/food intolerances that can have the symptom of nausea/vomiting. The hormones being all out of whack can cause a bit of nausea.

I know my daughter has nausea a lot (she's had it since she was 4 or 5), and it's frustrating trying to find an answer. The best results I've had it a gluten free diet. I've tried EVERYTHING. She did not show postiive for celiac (gluten intol) but going off does help. Gluten is not a nutrient we need, but it's in so much stuff. Just trying a gluten free diet, or even a reduced gluten might help you.

Also, just having sugars all out of whack can cause nausea. Especially low blood sugar (hypoglycemia). I know you are not certain with PCOS, but it sounds like you do have it. Are you following a special diet for it yet? Like a low glycemic index or low carb, etc? Just trying to increase the protein and limit the refined carbs may help the nausea. I know I get nausea horribly if I don't eat every 4 hours, and I then get a horrible rebound migraine. I feel awful for the whole day.

Also, I would def check into getting food allergy tested. I had my daughter (she's 10 now) get that, and it helped.

One more thing, a lot of folks are sensitive to diary or eggs, so you might want to trial a bit without one (or both) of those items. I went on a gluten-free, soy-free, dairy-free, and and no egg diet....basically lots of salads with good fats (olive oil/avocado), lean meats, good fatty acids (DHA's, omega's), and lots of veggies and some fruits. It did wonders for my nausea and my PCOS. I am nauseated most days before, now I'm down to once a week at most. I feel better, but still need to lose some more weight. It takes a LONG time to lose with PCOS.

I hope you feel better. I know, when I trialed the pill again, my nausea got worse....just FYI you might want to try to go without if your nausea is so bad. I hope you find your answers. Good luck to you. Feel free to ask me anything.

Just wanted to update here....I had a vaginal ultrasound and a regular ultrasound done yesterday and today I got a phone call from my doctor with the results.....I DO indeed have cysts on my ovaries, one of which is fairly large. I have to have another ultrasound in 6 to 8 weeks to make sure it's not growing. I'm getting closer to the official diagnosis of PCOS. I'm still waiting on the results for the blood work and the pap smear. but we are on a path now to a diagnosis at least. I'm a bit freaked out about the cysts though.

I have had pcos since age 13 and every symptom in the book. I have a severe case and it's in both ovaries. Until recently birth control helped manage my pain and even before I only got my period maybe once a year but recently I got a pulmanary embolism (2 small clots in my right lung) and needed to be put on blood thinners (xarelto) the day after I stopped birth control and took xarelto I've had a heavy heavy flow and blood clots in my period, I have to change my tampons and pads frequently, almost hourly, and I'm dizzy and weak and sleepy. I'm also starving 24/7. I know I can't keep losing this much blood and I'm terrified of needles for the record, how do I stop my period or lessen it? Help!