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Old 02-28-2008, 04:56 PM   #1
sweetsunshine72
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So, What Is This Thing Called PCOS, Anyway?

While there is a bit of discussion about it, for most of us, PCOS is a hormonal imbalance caused by Insulin Resistance (IR). IR can be tricky to diagnose, as the blood work can be read as "normal" while there is still an issue in the "background", so to speak. IR can be diagnosed from symptoms alone, such as excessive hunger (especially when you feel that you "shouldn't" be hungry), dizziness, headache, nausea, irritability, mood swings, the "shakes", exhaustion, especially if you skip a meal. Also, if you look at your neck where it meets your body, and notice that the skin is thicker, creased, and perhaps looks "dirty" even after having a shower, it is highly likely that you do, in fact, have IR.

Other women seem to have a thyroid issue as the main factor for their PCOS. There are also "thin cysters" who do not have a weight issue, but still can benefit from IR treatment.

The other things to keep in mind about PCOS are that it is not "just a fertility issue". It is a whole-body endocrine imbalance that can cause an increased risk of heart disease, diabetes, and certain "female" cancers. This is why it is important to make sure you treat the PCOS beyond just symptoms control such as Birth Control Pills (BCP). Also, if you do not have a menstrual cycle (absence of AF or Aunt Flow), make sure that you get one induced at least every 3 months to reduce your risk of endometrial, uterine, or cervical cancers.


What Is Insulin Resistance (IR)?

Insulin Resistance (IR) occurs when the body's cells do not use insulin effectively. Insulin is the "key" that allows glucose from the blood to enter cells to be used for energy. Think of Insulin Resistance like a slow-running drain - the insulin does get through, it just takes longer to do so, and in the meantime, the body produces more because it thinks that you need more. This over-production can cause Reactive Hypoglycemia (low blood-sugar) in some people, and can eventually wear out the pancreas, leading to Adult Onset Diabetes. In the meantime, as insulin is a hormone, it affects the other hormones in the body, including the sex-hormones, which cause many of the PCOS symptoms such as high testosterone levels (responsible for acne/bacne, hair loss and facial/body hair to name some). IR also causes the body to become very efficient at storing glucose as fat, which leads to the excess body fat which many of us suffer from, as well as the inability to lose weight.

For those who like to know the details: With IR, you produce more insulin than you need. This insulin is not taken up by the cells, so "floats" around in your body. The extra insulin affects your hormone levels directly, but also makes it harder for your folicles to burst allowing ovulation. These folicles become ovarian cysts, and as there is then no corpus luteum (what the folicle becomes after ovulation) to produce progesterone, there is nothing to trigger a proper bleed to shed the endometrium lining. You may still get something resembling a period, as the lining can get thick enough that it can't support itself, and chunks can fall off, but it doesn't clear out properly.

The good news is that if you better manage the IR, you reduce the amount of insulin in your system, and things start to go back to normal. This is one reason why Metformin can work so well for some people.


I've Heard That Women With PCOS Aren't Able To Have Children. Is This True?

While it is true that untreated PCOS is a leading cause of infertility, once it is properly treated, many women go on to become pregnant. In fact, many women find that using Metformin, an insulin re-sensitizing medication, may be enough to stabilize their PCOS symptoms and can return their fertility quite suddenly! Other women require further levels of medication and intervention, but the main thing to keep in mind is that there IS hope!!! Also, if you are not planning to become pregnant currently, keep in mind that you will still need to practice a reliable method of birth control.

You can also track your fertility by tracking your Basal Body Temperature (BBT), Cervical Mucus (CM) and other fertility signs. www.fertilityfriend.com is a great resource, and can also chart it for you online.


So, What Now? What Can I Do?

Firstly, get a thorough check-up from your doctor, that includes hormone levels, cholesterol levels, thyroid, and see if your doctor will do a 2 or 3 hour Glucose Tolerance Test. You should also make sure they take a Fasting Insulin level and Sex Hormone Binding Globulin. These tests are necessary because with PCOS, you have a much higher risk of developing heart disease, bad cholesterol levels, and diabetes. The GTT can also (but not always) reveal Insulin Resistance, the most common cause of PCOS. Quite often, you will have an elevated insulin level, which is a better indicator of IR. Usually, you will also find a lower level of SHBG, which affects how much the testosterone will affect you.

You should start on a low-er/good carb diet with 3 main meals and 2 - 3 healthy snacks/day. Focus on high-fibre, low-starch veggies and protein. You should also get lots of good exercise!!! If you haven't exercised for quite some time, start where you are now, and increase a little more each day. Even walking will do wonders, and will "get the juices flowing"!!!

A good supplement schedule should include Chromium (good for insulin/blood sugar issues), Fish Oil (Omega3, and good for cholesterol, metabolism, heart health, mood swings, heart rate, and overall brain function), and a good multi-vitamin/mineral.

You should also look into taking an insulin re-sensitizer such as Metformin/Glucophage and/or Cinnamon (herbal alternative). Base levels that seem to work for those of us with PCOS are 1,500 - 2,000 mg/day for the Met, and 500 - 1,000 mg/day for the Cinnamon. With both of them, you will want to work your way up to those doses, and allow your body to gradually adjust.

An Endocrinologist (endo) or Reproductive Endocrinologist (RE) are more likely to know and understand PCOS, but as there is a definate issue with finding a doctor who has thorough knowledge of PCOS, ANY doctor who takes you seriously, and is at least willing to do the research is more than worth his (her) weight in gold!!!


So, How Do I Lose Weight And Change My Lifestyle?

There are many ways to make lifestyle changes, but there are some key elements you need to include.

1) You need to limit highly processed, sugars and starchy carbs. Change the carbs that you do eat to a healthier, higher-fiber version - so brown bread, brown rice, whole wheat pasta, etc. Also, try to pair a protein with your carbs - it helps to even out your blood sugar.

2) You NEED to include exercise of some kind. Ideally, it's a combination of both cardio and muscle-building, but as IR is based in the muscle cells, working the muscles helps to improve insulin sensitivity.

3) Take it one step at a time. Don't try to change everything overnight. Take baby steps, and tackle one thing at a time.

4) Track your progress. This means more than just the scales, as your body is made up of muscle (which weighs more than fat), water, fat, and all the other "stuff" (organs, bones, cartiledge, etc.). Learn how to take your measurements, and chart that as well as weight. Celebrate when you go down a size. Keep maybe only one pair of "fat pants" so you have something to compare to - and get rid of the rest!!! Sell them, burn them, give them away - just get rid of them!!!

www.sparkpeople.com has come up with a really good system put together by dieticians, doctors, fitness professionals, etc., and it's naturally geared towards preventing and controlling IR and Diabetes. It also has nutrition and fitness trackers, recipes and recipe calculators, and TONS of info and it's 100% FREE!!!!!!

When you sign up for Sparkpeople, you start out with what your current stats are, and then put in what you want your goals to be. They will go as far as setting up a daily menu/fitness routine for you, or you can do it independently and enter all your info in the nutrition/fitness logs yourself. It really is a great tool for seeing and understanding the way that nutrtion and fitness interact!!!

The Insulite System is also available. They take all of the same elements, but put it together for you in one package, including your supplements. This is a program that is a little bit more specific in treating IR and PCOS. It can get a little pricy, but it is a good system. You can check out their system at pcos.insulitelabs.com, or from the main page of the PCOSA website.


But I Don't Have All The Symptoms!!! Do I Still Have PCOS?

As PCOS is a syndrome, you can have some, all, or only a few of the many symptoms. Classically, it is diagnosed by having 2 out of the following:

1) a history of PCOS, Insulin Resistance, Diabetes or Hypoglycemia in your family, or having these issues yourself.

2) blood work which shows certain hormonal imbalances such as a reversed LH:FSH ratio or elevated testosterone levels.

3) "PCOS-type" symptoms such as: weight gain (especially around the middle) and inability to lose weight, acne/bacne, irregular/absent AF, hair loss, body/facial hair, skin tags, dark skin patches (may look "dirty"), mood swings, lack of energy, elevated cholesterol levels, and also ovarian cysts. By the way, in spite of it's name, not all PCOS women have ovarian cysts.


I Can't/Won't Take Metformin. What Else Can I Do?

While Metformin is the most common insulin resensitizer, there are other options out there. Certainly, if the intestinal side effects (nausea, diarrhea, etc.) are too intense to realistically deal with, you can try the extended version. That helps many women. Always take with a meal, and be aware that eating starchy/sugary/fatty foods tend to make the side effects worse. Lettuce seems to be a bad idea, too, for some reason. Also, there is Cinnamon (an herbal alternative) which, while they are only just beginning to do studies about it, shows some strong promise in terms of treating Insulin Resistance! It has also been successfully used for thousands of years in Traditional Chinese Medicine to treat endocrine issues. Avandia is another medication that will improve insulin sensitivity. It can be used by itself, or in combination with Metformin or Cinnamon. Actose has just come on the market as a Metformin replacement that has fewer side effects. And don't knock the effects of diet and exercise!!!


I Want To Try Cinnamon. What Do I Get, And How Do I Take It?

The Cinnamon you get is powdered Cinnamon bark, like what you buy at the grocery store. The variety is called Caissia Cinnamon. Some people prefer capsules, as it is easier to measure and you don't have to have Cinnamon with everything. If you do get capsules, be sure that it is the powdered bark, or at the very least, a water-soluble product. You want to be careful NOT to use Cinnamon Oil, as it is difficult to process and flush from your body, and it does not have the insulin-sensitizing effect. If you are using regular Cinnamon from the store, a teaspoon is about equivalent to 500 mg. You can take it sprinkled on cereal, in tea, on desserts, mixed in applesauce, and so on. While previously, dosages were recommended up to 4,500 mg/day, due to the discovery of Cumarin (a powerful blood thinner) in Cassia Cinnamon, we no longer recommend this. Now, dosages of 500 - 1,000 mg/day are recommended. It may take a little longer to be effective, but some studies show that a lesser dosage can be just as effective long-term. This also reduces the need to gradually work up to your dosage.

Cinnamon can bring your blood sugar down when first getting used to it, so if at any time you get hypoglycemic symptoms (the "shakes", dizziness, headache, nausea/hunger, confusion, the sweats, irritability), treat it with a sweet drink followed by a healthy snack that is high in fibre and protein. You may need to either reduce your dosage for a week, or adjust your eating/exercise routine to better adjust to it.

Remember to take your Cinnamon with an adequate amount of liquid, as you can get "Cinnamon burps". Some women have even burped up a cloud of Cinnamon!!! While funny, it can burn, so it's a good idea to avoid it!


I'm Interested In Herbal Remedies. What Can I Take?

One important thing to keep in mind is that HERBAL REMEDIES ARE MEDICATIONS, TOO!!! Not all of them are safe to self-medicate with, and not all of them are OK to use while TTC. Some things are fairly simple to use and have few side-effects, such as Cinnamon which is designated as "Generally Considered To Be Safe", while others can be harmful if too much is taken, or if combined with other medications. Always run your supplements list through your doc, and if you can see a licensed Naturopath or herbalist, please do so before taking something new. Also, beware of adds which promise a "miracle cure" or "instant fertility". Many of them are "snake oil", and are not based on science or true herbal knowledge. It's definitely "Buyer Beware" out there!!!

This has recently been reinforced with the discovery of Cumarin (a powerful blood thinner) in Cassia Cinnamon, something that could have caused serious issues in some people. Always get your herbals checked out and approved by someone with appropriate knowledge (NOT the lady at the health-food store!!).


Is There A "Quick List" Of Meds And What They're For?

Things Taken To Control Blood Sugar/IR
Metformin - a medication that reduces IR and directs the liver to not produce as much glycogen.
Cinnamon - an herbal medication used to improve IR. Also has a pseudo-insulin effect and can lower blood sugar suddenly if not used to current dosage.
Chromium - a mineral used to improve IR. Chromium can also lower blood sugar when first taking it.
Alpha Lipoic Acid - very promising supplement to aid in reducing IR.

Others
Fish Oil - heart health, mood, IR, & cholesterol
B-Complex - energy and to combat anemia occasionally caused by metformin
Pre Natal - taken by those Trying To Conceive (TTC) because of the extra folic acid. Can also contain a multivitamin/mineral
Multivitamin/mineral - to fill in nutritional gaps

Fertility Drugs
Clomid - used to induce folicle maturation and growth. Can cause thining of uterine lining with prolonged use
Femara - used to induce folicle maturation and growth. Does not cause thining of uterine lining. Has shorter half-life than Clomid.
Gonal F - injection of Folicle Stimulating Hormone used to induce folicle maturation and growth
(Trigger Shot) - injection used to trigger ovulation

Hormonal Controls
Yaz, Yasmin - are birth control (BC) with aniti androgens
Spiro (Spironolactone) - is an anti-androgen that requires you be on BC
Provera/Prometrium - Progesterone supplements used to trigger a proper bleed. Prometrium is natural, so it can also be used to help support an early pregnancy.


I Want To Research And Get More Information On PCOS. Do You Know Of Some Good Resources?

Books:
- The Savvy Women's Guide to PCOS by Dr. Elizabeth Vliet
- Fertility for Dummies
- New Glucose Revolution Guide to Living Well with PCOS
- The PCOS Diet Book: How You Can Use the Nutritional Approach to Deal with Polycystic Ovary Syndrome
- A Patient's Guide to PCOS, Understanding and Reversing Polycystic Ovary Syndrome by Walter Futterweit
- PCOS: The Hidden Epidemic, by Samuel Thatcher
- PCOS: A Woman's Guide to Dealing with PCOS, by Colette Harris, Dr. Adam Carey

Websites:
- www.pcosupport.org
- www.fertilityfriend.com
- www.tcoyf.com
- www.inciid.org/faq.php?cat=infertility101&id=2
- http://www.nichd.nih.gov/news/releas...l_diabetes.cfm
- www.sparkpeople.com
- www.pcos.insulitelabs.com
- http://www.aace.com/pub/pdf/guidelin...nstatement.pdf
(Position Statement by the American Association of Clinical Endocrinologists)
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Also:
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Diagnosed PCOS 1994
Cannot tolerate BCP
No treatment for 12 years
Now, Metformin 1,500 mg/day, Fish Oil, D3, good multi
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Old 07-13-2008, 07:07 PM   #2
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Wow, that was a great synopsis of everything.

I just got diagnosed with PCOS and am finding it really hard to come up with a consensus from my doctors as to what course to take. The fertility specialist wants to go right to femara. He says that the clomid is unlikely to work and he doesn't believe in metformin. I am a relatively "thin cyster", ~5 '10 amd 160 pounds. I have heard of so many women on metformin and i am wondering if I am missing out?? Also does it matter how many cysts they see on u/s? Apparently I have 30 on one side and about 35 on the other. The fertility specialist was very clinical and vague, but was optimistic about my chances. I feel as though I am going through some crazy science experiment. All very shocking when you first hear about it.

Any advice would be appreciated!

Thanks,
Anna
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Old 07-14-2008, 01:21 PM   #3
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Thanks for being such a great source of information! I have had the symptoms of PCOS for several years...I would say since my early 20's. I have sooo many questions and I am a Registered Nurse, so go figure! I found one of my local docs that is willing to start me on Metformin, but the only test he did was a C-Peptide. I would really like to know my levels on all the recommended tests, so I am going to approach him with the info obtained here and see if he would be willling.

I am quickly approaching my 42nd birthday and I feel like I am falling apart! My symptoms seem to be worsening (hirsuitism, weight gain, skin tags, anxiety, irritability, exhaustion..etc.) I feel like I could be a poster child for PCOS.

This site has given me a glimmer of hope! I am anxious to browse the site and see what resources are available. I really need a strong support group. I am hoping to find it here. I would like to know what messenger the masses here prefer so I can download it.

Thanks...

Donna
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Old 07-14-2008, 10:26 PM   #4
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You basically have 2 choices - to jump right into baby-making and pretty much go with what the fertility doc says - or to seek out an endocrinologist and get to the bottom of things, which is likely to restore much of your fertility on it's own (may take a little longer, though).

Femara is probably about the same "level" of fertility med as clomid. It seems to do a pretty good job, so I don't see a problem there.

Even though you are a "thin cyster", you may still have Insulin Resistance (some Thin Cysters are thin because they eat like birds and work their heine's off in order to keep a "normal" weight). The second-most-likely cause of your PCOS is hypothyriodism (sometimes technically still "normal"), and you can have both at the same time. You should also be evaluated for other concerns like Graves' Disease (a form of hyperthyriodism) and other PCOS "mimics".

My own personal perspective (and suggestion) is, if you can take the time to dig down and find out what's causing the whole thing in the first place, then you can treat the cause and put yourself in a much healthier physical state, which leads to a much better outcome (fewer miscarriages, healthier pregnancy, etc.). I totally understand if the "bio clock is ticking", though! Just make an informed decision about what you want to do.

As for your doc's bedside manner, I would ask very pointed questions, and demand some answers! You should NOT be feeling like a guinnea pig!!!!! That alone may be enough to seek out someone else!

Take care, and HTH! (((HUGS)))
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Cannot tolerate BCP
No treatment for 12 years
Now, Metformin 1,500 mg/day, Fish Oil, D3, good multi
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Old 07-14-2008, 10:33 PM   #5
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Hey Donna,

First of all, WELCOME!!!!

I'm glad we can help shed some light on what's been happening with you! You should start seeing some improvements within a few weeks of making the lifestyle changes and getting on the Metformin. Just remember to start small with the Met, and gradually ramp up to your theraputic dosage (1,500 mg/day). There's one brave soul who just jumped head-first into it, and she lived on the toilet for more than 2 weeks, I think! I DON'T recommend that!!!!! lol

As for common messengers - really, there isn't one that everyone uses, or at least, not that I've noticed. Feel free to post in any of the boards, though! General Discussion and Fertility seem to be the busiest and most-frequented, with the Lifestyle another busy one. Sundays seem to slow down quite a bit, but we do try to keep up with what's happening! I'm sure you'll soon find a couple of "online buddies" who you can then message back and forth with.

Take care, and welcome once again! PCOS is most definately a pain in the butt, but the silver lining is that it forces you to take excellent care of yourself - something that all of us should be doing anyways!

(((HUGS)))
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Also:
DS (1992)
Diagnosed PCOS 1994
Cannot tolerate BCP
No treatment for 12 years
Now, Metformin 1,500 mg/day, Fish Oil, D3, good multi
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Old 08-05-2008, 03:06 PM   #6
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Default Just diagnosed yesterday!

Thanks for this thread. The information is really helpful. The nurse who called to tell me my lab results said "Everything looks great. Well there was a small thing, the was issue with the ratio of FSH and LH which means you have PCOS, but Glucophage will treat it." I asked some questions and she barely anwered any of them then said "so what pharmacy do want that called to"

All I knew was that two of my friends have been diagnosed and have told me that they have a 1% chance of ever getting pregnant so I freaked out a bit. I called them both and they both breifly took Met and quit shortly after but have never looked into anything else. I am so glad that there is something that could help with fertility but also that there are some lifestyle and more natural options if I choose not to take the Met.

I have a few questions. Do they know why or is there a test to find out why I am IR/PCOS? I would like to work on the root of the problem as well as the symptoms. I do want to try to get pregnant next summer. I have an IUD in now but I guess I am probably not ovulating anyway. If I wait to try Met will fertility issues get worse? I have a 1 1/2 year old I know I ovulated at least once then, maybe I just got lucky. When I asked the nurse on the phone she said that although she could say 100% guaranteed the Met would restore my fertility. Is that true or do some woman with PCOS still struggle to get pregnant even on the Met?

As far as lifestyle changes goes it sounds like diet and exercise may not be enough because I have an insatiable appetite and I have gain ALOT of weight in the last year.

Thanks for the suppor, Lauren
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Old 09-10-2008, 11:10 PM   #7
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Default met dose

Dear sweetsunshine, thank you very much for your clear and very useful information. I am concerned about the dose the RE has prescribed to my 17 year old daughter. She is doing fine generally, but she is taking 3000mg of metformin per day. Are there any side effects to look for? She started in July with 500 for 2 weeks, and gradually adding them up until she got to two three times per day.
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Old 09-11-2008, 12:56 AM   #8
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I haven't had a period since mid-July and have taken 3 negative pregnancy tests. I was just diagnosed following blood work, and had a vaginal ultrasound 9/10/08 that showed no "string of pearls", but one 22mm cyst on the right ovary. I am wondering if anyone else has had a similar experience? And I also need to know where to go from here. I am 32 and interested in starting a family soon. My doc can't fit me in his schedule until 10/01/08. The nurse actually had the audacity to tell me that they can only work patients in if they are bleeding. That's my problem...I'm not bleeding! Then they told me to use an ovulation kit to get pregnant. I bought one, and it says that the results can be off if you have PCOS or ovarian cysts. I think I need a new doctor. Help!
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Old 09-11-2008, 06:40 AM   #9
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3,000 mg/day IS VERY high! I've heard of dosages up to 2,550 mg/day (850 3X/day), but that's it. Even on the product information put out by the company, 2,550 mg is as high as they recommend. My own endo doesn't like going beyond 2,000 mg/day as he feels that the marginal increase in benefits of that high of a dosage doesn't make up for the increased level of side effects. The main side effects of Metformin (aside from the stomach issues you get when first getting used to Met) are an issue with absorbing B12 (a good supplement helps that - I take 1,000 mcg B12 daily), possible liver issues (you really need to get a blood test for that every 6 months), and Lactic Acidosis (this is rare, but serious. Basically, if she gets REALLY sick suddenly, take her to the doctor or emergency, and tell them that she's on Met. They will do a blood test for it, and if she does have it, they will give her an IV of sodium bicarbonate and she will not be able to take Met again.) Metformin IS one of the mildest of the diabetic/Insulin Resistance medications in terms of serious side effects, but it does have them.

I would talk to your doctor's office, and tell them that you have read more about Met and are a bit anxious about the level she's on. Ask if you can reduce it to 2,000 mg/day and keep it there for a while (3 - 6 months) to see of that's a good enough dosage to "do the job". If it's not, then you can always look at raising it again. I think that's a fair request.

Take care, and HTH!!!
__________________
Registered Massage Therapist
2200-hour program in Canada
Focus on women's health and managing chronic health issues
www.massageforlifenb.com

Also:
DS (1992)
Diagnosed PCOS 1994
Cannot tolerate BCP
No treatment for 12 years
Now, Metformin 1,500 mg/day, Fish Oil, D3, good multi
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Old 09-11-2008, 07:00 AM   #10
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There's a few things here. First of all, you need to get a period! Secondly, you need to get that cyst to resolve. While I'm NOT a big fan of BCP, in this case it's probably a good idea for a few months as it will help with both.

Once the cyst is resolved, you can start using either an ovulation kit (many of us won't get a negative due to the hormone imbalances, but if you do, then it should be OK to use), or you can start taking your Basal Body Temperature (BBT) first thing in the morning and chart it. That will actually give you a lot more information to go on besides just if/when you ovulate, and many of us here prefer it. www.fertilityfriend.com is a great website that can help you with that and can chart it for you online for free, too.

The main thing to realize is that PCOS is really a hormonal reaction caused by Insulin Resistance, so if you don't tackle the metabolic issue, you're really just covering up the symptoms but not getting any better. Treatment for PCOS starts with a low-GI-type diet and exercise, and most of us also take Metformin, too, to resensitize our bodies to insulin so that we can lose weight and get onto a good track and out of the bad one!

Personally, I would see if you can get in to see an endocrinologist, but if this doctor will see you before then, then go ahead and see him. He's probably going to want to put you on BCP at first, which is fine short-term. In the meantime, see the endo for a good long-term plan. As for using BCP while TTC (Trying To Conceive), many women with PCOS find that the first months off of BCP are their most fertile as the BCP "forces" your body into a more "normal" hormone balance and it takes a few months for your body to revert back to the imbalance of PCOS. Keep working on the nutrition part of things. You won't want to be doing vigourous exercise until that cyst resolves (it can twist and that's NOT a good thing!!!), but walking should be fine, and see if this doc will give you Metformin to help with the underlying Insulin Resistance that almost all of us have.

One last thing - once you treat the IR and get yourself ovulating again, then we have almost the same chance of getting pregnant as the "average" woman! With Met, sometimes within the first few months, even! Even if you still require fertility treatment, using the diet, exercise, and Met will make treatments work more effectively. This is good timing, actually, as it takes a few months for a cyst to resolve, and it also takes about 3 months for the diet/exercise/Met to work it's best.

HTH!
__________________
Registered Massage Therapist
2200-hour program in Canada
Focus on women's health and managing chronic health issues
www.massageforlifenb.com

Also:
DS (1992)
Diagnosed PCOS 1994
Cannot tolerate BCP
No treatment for 12 years
Now, Metformin 1,500 mg/day, Fish Oil, D3, good multi
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