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Polycystic Ovarian Syndrome in an endocrine disorder that affects about 1 in every 10 women in the US. The three most identifying characteristics of PCOS are unusually high amounts of male hormones called androgens, irregular or infrequent menstrual cycles and small fluid filled cysts on the ovaries.
What are the symptoms of PCOS?Note that this is a complete list of symptoms you may experience if you have PCOS. It is unlikely you will have them ALL, and very possible that you may have just a few.
* Infrequent or no menstrual periods, heavy or prolonged and/or irregular bleeding
* Infertility or inability to get pregnant because of not ovulating
* Increased growth of hair on the face, chest, stomach, back, thumbs, or toes
* Acne, oily skin, or dandruff
* Pelvic pain
* Weight gain or obesity, usually carrying extra weight around the waist
*A history of blood sugar issues (hyper or hypoglycemia) and/or insulin resistance
* Type 2 diabetes
* High cholesterol
* High blood pressure
* Male-pattern baldness or thinning hair
* Patches of thickened and dark brown or black skin on the neck, arms, breasts, or thighs
* Skin tags, or tiny excess flaps of skin in the armpits or neck area
* Sleep apnea- excessive snoring and breathing stops at times while asleep
* Hyperandrogenism (increased male hormones)
What causes PCOS?
While the exact cause of PCOS is unknown it’s currently believed to have a genetic factor. Studies are now focusing on how a woman with PCOS uses insulin. Women with PCOS have higher insulin levels in the blood and many of them have some degree of insulin resistance. High insulin levels lead to higher androgens as the body tries to compensate. For some women, this state of constant high insulin levels causes the body to turn glucose into fat and it turns off the fat metabolizing enzyme. In essence, the body puts on fat but it doesn’t burn it. This is why many women with PCOS find it difficult to lose weight, even with diet and exercise.
Is there a cure?
There is no "cure" for PCOS, it can only be managed.
There is a hypothesis that the PCOS gene can be turned on or off by certain environmental factors. In other words, women don't “have” PCOS, they have some measure of insulin resistance and are PCOS sensitive. For many women, a low glucose diet and regular exercise alone have effectively eliminated their PCOS symptoms and led to healthy pregnancies. However, it can be extraordinarily difficult for women with PCOS to stick to such a strict diet. Insulin resistance leads to more cravings for sugar and carbohydrates. Think of insulin as needing to get to your cells to make your body function. Basically what it does is make you capable of metabolizing the sugars you eat (and carbs which turn to sugars in the blood). So you eat, and the insulin knocks on the door of your cells. In women who are insulin resistant, their cells don't answer. The doors are shut extra tight, and they need more insulin to basically knock the door down and keep your body working. Hence, YOU crave more/sugary food to create the insulin your body thinks it needs. This is why many women choose to go on the prescription drug Metformin. More on Metformin below.
When do I ovulate? How do I know if I've ovulated? I've had fertile signs (EWCM, high/open CP, increased sex drive, etc.), does this confirm ovulation?
If you have been diagnosed with PCOS it can be very difficult to predict ovulation. You may not be ovulating at all, or your ovulation may be very sporadic and unpredictable. You may ovulate earlier than the day 14 average, or more typically, much later. It is also important to note that many women will experience fertile signs as their body attempts to get into gear to ovulate... but unfortunately with PCOS, these signs do not necessarily mean ovulation has actually occurred. So how CAN you know?
You can try using ovulation predictors kits (OPKs) available at any drug store, dollar store, or online- but these don't work for many women with PCOS, giving false positives OR not giving a positive result before you do in fact ovulate. Other women with PCOS have no problems with them.
The very best way to confirm ovulation is to get in the habit of charting your basal body temperature (BBT). To chart your BBT, simply take your temperature immediately upon waking up each morning, after at least 3 hours of sleep and at the same time each day. If you want to sleep in on weekends, I've found setting my alarm to take my temp and going back to sleep has been pretty easy to do. Record your results daily on your chart. Ovulation is confirmed by a thermal shift- meaning your BBT rises and stays up consistently. An excellent site to record your temperatures and help you interpret you information is Ovulation Calendar and Ovulation Chart - Fertility Charting ... you will notice many ladies on JM have Fertility Friend tickers tracking their cycle days and days past ovulation. This is what we are referring to when we mention "chart stalking" others.
Another excellent benefit to charting is the additional information it may give your doctor. By looking at your charts, average temperatures, and ovulation patterns (or lack thereof) your doctor may be better able to pinpoint exactly what tests and treatments will help you to acheive and sustain a healthy pregnancy.
How do I get pregnant if I have PCOS? Will I have a miscarriage?
First of all, it IS possible for a woman with PCOS to get pregnant with no medical assistance at all. Unfortunately, there is strong evidence that the miscarriage rate among untreated PCOS patients is much higher than 'normal'. Depending where you look, miscarriage rates are often listed in the 45-65% range. Thus, it is advisable to consult a doctor before trying to conceive if you suspect PCOS. A simple blood test will help your doctor confirm a diagnosis and start your treatment. Miscarriage rates are reduced to about the same as 'normal' women when a proper diagnosis and appropriate treatment is given.
For those of us trying to conceive with PCOS, the likely protocol will be to start with Metformin therapy. Fertility drugs such as Clomid or Femara may be added if your doctor decides it is necessary to induce ovulation/ create a stronger ovulation. “Stronger” ovulation basically means the formation of a stronger follicle which will hypothetically result in a healthier egg, earlier ovulation, and higher levels of progesterone post-ovulation. Not all women with PCOS are annovulatory, but for whatever reason their ovulation is not strong enough to result in a healthy pregnancy. If you and your doctor choose to use fertility drugs, you should expect to be monitored via internal exam and/or trans-vaginal ultrasound throughout the cycle. Your doctor will be looking for cysts that are dangerously large, follicle growth, and changes in uterine lining. For women who continue to not respond to treatment, more invasive treatments such as ovarian drilling, injectible fertility drugs, IUI, and/or IVF may be recommended. The good news? The vast majority of women with PCOS who want children can ultimately have them. Read more about this here: Can a Woman With PCOS Get Pregnant?
Isn't Metformin a diabetic drug? I don't have diabetes.
Metformin was originally prescribed to Diabetes patients, but is widely used to treat PCOS. This is because Diabetes is a result of severe insulin resistance- eventually the pancreas is 'exhausted' by constantly being in overdrive. When it stops working altogether, Diabetes is the diagnosis. Diabetes patients use Metformin to help sensitize themselves to insulin therapy.
PCOS patients are at higher risk for developing Diabetes, due to the insulin resistance factor discussed above. Metformin provides the benefit of reducing insulin resistance before full blown Diabetes occurs. There is minimal evidence that women who continue Metformin throughout pregnancy also have lower rates of gestational diabetes. Read more here: Polycystic Ovary Syndrome and Pregnancy: Is Metformin the Magic Bullet? ? Diabetes Spectrum (thanks DawnN!)
NOTE: If you are prescribed Metformin, it's a very good idea to start taking a B-Complex vitamin along with your daily Prenatal (which everyone who is TTC should be taking). Over time, Met can deplete your stores of B-12 and folate, and we all know how essential folate is to a healthy pregnancy! It can also put you at higher risk for bone and brain cell loss and heart disease as a result of lowered homocysteine. B-Complex supplements reduce these side effects. See more on this concern here: PCOS News: Take B-Vitamins with Metformin for Better Results
So am I definitely insulin resistant if I have PCOS?
This is a topic of debate. Some doctors will do a blood glucose test and decide you are not insulin resistant, even if you do have a PCOS diagnosis. Some may then not prescribe Metformin, but many will still prescribe it. And for most women with PCOS, it will make a difference in some measure. Given the purpose of the drug, this leads to questions about “insulin resistance” (IR) and how it's diagnosed. One theory is that the level of IR found in women with PCOS varies greatly. Some may have a strong resistance, whereas in others it is very mild. Even a mild IR can still create hormonal problems, and Metformin is effective in treating these.
I'm uncomfortable with the idea of prescription drugs at this point. Can PCOS be treated naturally?
Yes! In fact, personally, I'd say it SHOULD be treated naturally before resorting to prescription drugs and expensive medical assistance. MANY women find their miracle "cure" is all-natural. Along with low-glucose diet and exercise, there are many supplements out there worth researching that are reported to ease PCOS symptoms. A natural alternative to Metformin, for example, might be Cinnamon supplements.
Other common natural treatments include: Chaste Tree Berry (Vitex), Fish Oil capsules, Red Raspberry leaf, B Vitamins, and even soy isoflavones in place of Clomid to induce ovulation. It is best to consult with a certified naturalist to find the correct balance of supplements for you individually. You can read more about the various natural supplements for PCOS and their effects here: Quality Supplements for PCOS (Polycystic Ovarian Syndrome) and Infertility
Many naturalists suggest limiting or eliminating animal products from the diet. You will find conflicting information about this, but building up stores of phytochemicals in the body is proven to have a positive impact on PCOS, so plant-based protein sources may be superior to animal protein. If you do consume animal protein, it should be absolutely "clean"--that is organic, pasture raised ("free range" is a meaningless marketing phrase) and ALWAYS hormone and antibiotic free! Absolutely NO processed animal foods should be consumed.
VITAMINS ARE VITAL! And it is VITAL to get a full blood panel to check for vitamin deficiencies, particularly D and B12. Metformin, lower animal consumption and hormonal birth control can all deplete your B12 stores, so be sure to take a high quality, preferably sublingual, METHYLCOBALAMIN (NOT the more common CYANCOBALAMIN) supplement. Jarrow Formulas makes one that is very affordable. Injections of methylcobalamin may be very beneficial if you are deficient, so ask your doctor for a blood test. http://pcosdiva.com/2012/08/a-vitami...ithout/http://
If you are comfortable with looking into alternative/Eastern medicine, it is worthwhile to research the benefits of yoga and/or acupuncture/acupressure. Regular practice/treatment may make a significant impact on your symptoms.
*A long-time JM sister who suffered with PCOS and PCOS related losses discovered her own unique brand of PCOS "magic" treatment...it worked for her when all MA failed. Several of our cysters have joyfully reported that it worked for them as well. I watched all of their painful journeys, pregnancies, and now I see their baby photos on Facebook or I wouldn't be endorsing this. It's as simple as a bottle of Geritol and a few lemons, so it can't hurt to try! Read her full blog post here. http://icanmakeangels.blogspot.com/2...-post-for.html
I haven't had AF in awhile and I'm anxious to start a new cycle. Is there anything I can do?
You may want to ask your doctor about getting a prescription for progesterone to bring on a period. Especially if you are TTC and charting your BBT, if there is no sign of ovulation after CD21 your doctor may recommend this route. There is some evidence that later ovulation decreases the chance of a healthy egg, though this is not always true. You will typically take the progesterone for 10-12 days, and a period should start fairly quickly thereafter. The two major types of prescribed progesterone are Prometrium and Provera. Prometrium mimics the hormone made by your body, and will not hurt a developing fetus if you are indeed pregnant. Provera is a harsher, chemical progesterone and may be dangerous if you are pregnant and don't know it. Your doctor will probably prescribe Prometrium for this reason, but make sure to confirm that is the type of progesterone you are getting.
If you prefer to try to induce AF naturally, there are a variety of 'home remedies' you can try. As always you should consult with a naturalist before adding any herbal supplement to your routine. Information on all of the following options is available more in depth with a quick Google search: accupressure/accupuncture, ginger/ginger tea, parsley tea, red raspberry leaf tea, exercise, orgasm/unprotected sex (a chemical in semen may help induce uterine contractions), high doses of Vitamin C, spending time with other women with regular cycles (it's proven that women who live together/spend a lot of time together often end up with sychronized cycles).
Where can I find the medical studies and hard evidence to bring to my doctor to discuss my worries?
Google is a great resource for this, and there are some good studies to be found. Many are linked in this sticky. However, it should be noted that PCOS is still highly UNDER-studied. In many ways, we are on our own to be our own advocates, listen to our bodies, and follow our intuition. No two women with PCOS are exactly alike; all have different causes, different symptoms, different levels of insulin resistance, and different treatments that will ultimately lead them to a healthy pregnancy and healthier life. Remember most doctors, despite what we pay them, are NOT PCOS experts, and unless you are working with a Reproductive Endocrinologist it is likely you will know more than they do. Regardless of who your doctor is or what their background is, it is ALWAYS a good idea to take charge of your own health and never take anything at face value. Do your own research, ask questions, reach out to other women with PCOS, and suggest things to your doctor. A good doctor will be grateful and impressed that you care enough for your own health to put in the time. A doctor who gets annoyed or offended is a sign that it's time to find a new doctor who will work with you, not just their ego.
Mandy, thanks for updating and expanding this!! All of this info. is great for newbies to know! I am actually looking into the Vitex right now, to try out before I get my treatment in June. I'm debating the cinnamon, as well. I would be SHOCKED if it made a difference...do you, personally, know of anyone who has tried it on the board or otherwise?
I really don't like the diagnosis PCOS because when I spoke to my doctor the first time it was like she was reading down a list and if I had more than 2 items checked, I had PCOS. It seems so general. Thanks for the info. This all gets so confusing.
Wow! Thank you so much for all the information! I haven't been formally diagnosed, but that will probably be the outcome of my next doctor's appointment and I want to have all the facts I can. Thank you!
I see that you've listed "pelvic pain" as a symptom of PCOS. I haven't heard that before! I have been diagnosed with PCOS and several pelvic pain conditions (vulvar vestibulitis, vaginismus/vulvodynia). Could these conditions be related? Any info is much appreciated!
Thanks a lot for the info. I just joined this site tonight but I've been snooping for a little while.
I have had PCOS for about 8 years now (or my current OB/GYN doc thinks so anyway based on history of symptoms) but unfortunately it was just diagnosed about 3 years ago. Prior to that I had severe menorrhagia and my previous doc told me that I pretty much needed a total hysterectomy. As a then 24 year old, I was horrified and deeply deeply saddened by that suggestion.
Thankfully I began doing my own research on PCOS and symptoms, and realized that I had a lot of them, and started seeking a new GYN doc for a second-opinion. I was already on a low-carb/low-glucose diet (due to another condition i have where my body does not properly digest carbohydrates- especially the processed ones) and now, three years later, (and as of 6 months ago) I am off of BC pills, and for the past 3 months, have had pretty regular "like clockwork" periods.
Now I'm just trying to drop some more of this weight (I've lost about 10 lbs in the past week or so, since committing back to my low-carb lifestyle) and after three months of NO hits on the OPKs... I'm hoping I get some different results this month.
PCOS is a tough and rough road... because of PCOS, my best friend had to have all but one-quarter of ONE of her ovaries removed at the age of 22. With a quarter of an ovary left, she conceived her ONE miracle baby boy... a month later she found out that the remaining part of her ovary had a cyst on it that was larger than the ovary itself, and that she would have to have the ovary removed. I just keep thinking that if she could conceive with only 1/4 of an ovary, while also being severely overweight, that there is hope for all of us fat and thin alike with PCOS.