Warning--This is longggggg.....
I'm putting this here because I've read so many stories from all of you. Maybe this can help someone.
When I was 18 the DR's told me that I had a "hormonal Imbalance" and that I would never have kids. My periods were always super wonky. Sometimes I wouldn't get them for 3 months or I would bleed for 6 weeks straight. When I was in my early 20's my husband (at the time) and I tried for 3 and 1/2 years to get pregnant. Nothing worked and my periods were just as wonky. The Dr's wanted me to do all sorts of invasive things and I just couldn't bring myself to do it, plus we didn't really have the money. I felt like maybe I wasn't supposed to be a mom or I didn't really want it bad enough. Meanwhile everyone I knew started having babies. EVERYONE!
Fast forward 6 years...divorced and wandering I met another man. I told him from the beginning that I couldn't have kids and I just thought he should be forwarned. He said he didn't think it was true. Typical man. I shrugged and said believe whatever you want, but it's true. Fast forward another 2 years and we're living in SF. Periods still wacked. Never predictable never "normal". I end up diagnossing myself with PCOS. A DR confirms and wants to start me on meds immediately (clomid and metformin). I refuse. I find an acupuncturist who is also a nutrionist and she says it's all fixable. I didn't believe any of it. I had had my heart broken too many times. She puts me on a low carb, low processed food diet and some herbal suppliments. Within a month my cycle was "normal" and in 5 months I was pregnant "by accident". I lost that baby at 35 weeks (a whole other story and another LONG post
, but 3 months later I was pregnant again and now I have a wild, crazy, wonderful 2 year old. It only took me 13 years to get here.
Here's my blurb about PCOS/Insulin Resistance---
Polycystic Ovarian Syndrome (PCOS) is a badly named advanced form of insulin resistance. It is now said to be the leading cause of infertility in women and is finally being addressed as a serious health concern in the United States. Some estimates say that 10-20% of women in the US have some level of PCOS. For many years PCOS was described, diagnosed and treated as simply a case of cysts that were evident on a woman’s ovaries caused by eggs that had matured enough to be released during a monthly cycle, but had failed to burst through the ovaries in order to travel down the fallopian tubes to be fertilized or discarded (in a menstrual cycle). There was no known cause for this syndrome (which also included symptoms of irregular or absent periods, moodiness similar to PMS and infertility). It was treated by prescribing the birth control pill in order to regulate the cycles. Other symptoms that women reported such as excessive hair growth and an inability to lose weight regardless of exercise and diet were largely written off by doctors who said to “go to the gym and go get waxed.”
In the past 8-10 years the medical establishment has slowly but surely been discovering more and more about this condition. Endocrinologists began to find a link between PCOS symptoms and insulin resistance. Some forms of diabetic medication (glucophages) were found to be helpful in treating the symptoms. Symptoms can be mild or severe, and can vary widely from woman to woman. This is part of the reason doctors often miss the diagnosis. Someone with PCOS may have one or all of the following symptoms in varying degrees:
-irregular periods: abnormal, irregular, heavy or scanty (oligomenorrhea)
-absent periods (amenorrhea)
-hirsutism (excess facial and/or body hair)
-alopecia (male-pattern hair loss)
-acanthosis nigricans (brown skin patches, often found on the nape of the neck)
-high cholesterol levels
-high blood pressure
-exhaustion and/or lack of mental alertness
-decreased sex drive
-excess "male" hormones, such as androgens, DHEAS, or testosterone
-decreased breast size or increased breast size
-enlarged clitoris (rare)
Symptoms can worsen over time or with weight gain.
Recently more and more research has been done. The latest news from the endocrinologists is that PCOS is caused by insulin resistance. Insulin is a hormone produced by the pancreas. Insulin picks up glucose from the blood stream, carries it to cells and knocks on the cell door. The cell opens up for the insulin and takes the glucose from the insulin. The cell uses the glucose for fuel. In people with PCOS or any other form of insulin resistance, the cell refuses to open up for the insulin. The result is that every time you eat anything with glucose the glucose builds up in the blood stream. Your body then realizes that there is way too much glucose in the blood and triggers the pancreas to make more insulin to lower the glucose load. The pancreas sends out more insulin which tries to deliver the glucose to the cells who won’t answer the door. This cycle continues every time you eat any glucose. Eventually the glucose builds and your body stores the excess directly into fat cells. Also, insulin is floating around in the blood stream in enormous amounts. While all this is going on, your cells are starving in the midst of plenty. They cannot take in the glucose that is in almost toxic levels in your blood stream. The cells then send out a message saying that they are hungry and tired from lack of food so your brain sends out the message that you need food. In “normal” bodies glucose is the fastest energy source so your brain tells you to eat anything with glucose in it and FAST. This is a sugar/carb craving. You eat the sugar/carb and your brain registers the glucose intake and shut down the alarm for a little while. But the energy is still not available to the cells and they are still tired and hungry and all you have done is raise the insulin levels in your body even further.
Insulin affects many other hormones in your body including the “sex” hormones. Specifically, it raises the levels of the androgen hormones, including testosterone. This also reduces the relative levels of progesterone. The net effect is the above list of symptoms and longer term health risks. PCOS, if left untreated, causes the following health problems: Adult Onset Diabetes (usually by age 40), heart disease, liver failure, endometrial cancer and cervical cancer. Diabetes is the most common and is almost a certainty if the PCOS is untreated. It is caused when your pancreas, which has been creating overloads of insulin for an extended period of time, finally fails and no longer produces any insulin at all. Now you have a double problem: a body that isn’t as reactive to insulin as it should be and now doesn’t produce any insulin. You then have to take synthetic insulin and make your body respond to the insulin it does get.
Although most medical practitioners will say that the only treatment of PCOS is some form of a glucophage (usually Metformin) there are significant studies that say that long term use of these drugs cause more problems than they solve. If taken long term glucophages can destroy your liver and kidneys, often requiring transplants after 20 years. That can be a scary prospect if you start taking them in your 20’s and need a double transplant by your 40’s.
The only lasting, safe and effective treatment so far is a lifestyle change. All carbs break down into glucose (aka sugar), and your body cannot process sugar, therefore you cannot eat anything that is or becomes sugar. If you do your body will release more insulin. The solution is really quite simple, yet incredibly difficult. This is not a quick fix diet; it is the rest of your life. The low-carb diet is the single most effective treatment of this syndrome. Any of the Low-Carb diets should work. The carb levels that you should be eating often depend on how severe the PCOS is and what your activity level is. In severe cases as little as 30 grams of carbs a day is recommended. Coupled with exercise, the insulin can be controlled and the symptoms disappear. The weight that most women have had trouble with since puberty finally goes away, periods become regular, the extra hair falls out and most importantly many women find that for the first time that they can remember they feel good! Supplements can also be very helpful. Bio-Gyn is a nutritional supplement that helps your body to produce more progesterone and is helpful in regulating menstrual cycles and ovulation. Potassium-magnesium citrate helps your body break down carbs and Omega 3 oils help maintain a proper hormone balance. A good multi vitamin is also useful.
There are some websites now that can be useful; however most of them still suggest using medication to regulate the insulin resistance. They are quickly coming out with more and more drugs, but their safety is still in question and I feel that if a diet change can fix the problem, why resort to the drugs.
I would suggest that if you think you have PCOS that you should find an endocrinologist who can run the PCOS blood panel on you and then try to find someone who understands what PCOS really is and can help you treat it without the use of the medications. If you have any further questions please feel free to contact me. I hope that this can help.
Hugs to you all who are trying and hoping and searching!
Mom to Emmy 1/13/03
and Isabel (stillborn at 35 weeks) 1/15/02