Is PCOS Even Real?

I went to my gynecological appointment on Wednesday. I'd had an ultrasound earlier in the day. My ovaries are fine. Squeaky clean! They're normal size (not enlarged, as often is the case with PCOS) and there are no cysts on them. My doctor's response was, "well, despite that, I still think you have PCOS." WHAT!?!

I've been reading up on PCOS, and I read an interesting point of commentary this morning in What Nurses Know...PCOS by Karen Roush. She said that elevated angrogens and insulin resistance, in the absence of any other identifiable cause, typically gets a PCOS diagnosis. How can that be when the syndrome's name is "poly-cystic." My ovaries are acystic. When I add that to the fact that I had no problems getting pregnant with either of my children, my waist is still significantly smaller than my hips (not the large waist-large hips body type common with PCOS), and a lack of male-pattern body hair, I don't see *how* I could qualify for a PCOS diagnosis.

I was prepared to hear that I had cysts on my ovaries and for that to confirm my doctors' (yes, multiple doctors) suspicions, but I'm just not able to accept that 2 symptoms means I have a disorder that we don't understand at all.

In other news, my doctor did find multiple masses in my uterus when she did the endometrial biopsy. She took samples of 2 of the masses and a sample of the endometrial lining. I'm a bit scared that I have cancer, though again, one of the primary symptoms of uterine cancer or fibroids is heavy or irregular bleeding between periods, which I don't have.

The metformin also is working. I've lost 7 pounds since I started taking it 9 days ago. Seven pounds in 9 days really seems like an unhealthy amount of weight loss, though in some ways it confirms some of the thoughts I've had about nutrition & my body. I have to think more about the connections to write something coherent, but it does make me feel better to know that despite all of my eating the "right" foods and getting more exercise that I didn't lose weight. At all. None. Nada. In fact, until 4 months ago, I was still GAINING weight, even while I was training for (and competing in!) a foot race.

So, this week is another waiting game. Let's see what the biopsy shows and then...what? Say I have PCOS even if I lack the symptoms?

Telling Others About PCOS

I sent an email to 2 friends today about the potential PCOS diagnosis. I suppose the "official" word will come tomorrow after my gynecologist visit. I didn't tell them because I want sympathy or to talk about the diagnosis. I don't want to. At all. Except here, of course.

I had to tell them because I could tell one of them was getting upset with me. The three of us coordinate a monthly arts exhibition, and it's a monumental task. To be honest, it's expanded more than I'd intended this first year, and it's a lot of unpaid work. While I love the project, I'm just not going to have the time to commit to the volunteer organizations of which I'm part right now.

I'm limiting my work with another organization to the scope required by the organizational by-laws, though I've been doing far more. My board term is up in December, and I am not running for the board again. I need time to work on me. My family deserves time to process this diagnosis and what it means and how our lives have to change without the added stress of our many volunteer commitments.

Plus we know that medical bills are going to begin piling up. They already are, and they're not going to get better, which means I need to be spending more time on contract work and less time on unpaid stuff. I'm normally Susie Volunteer, so I hate it, but my health has to come first right now. I'm still not completely sold on that idea because I'm just deflated thinking about working out and working out and cutting every small pleasure from my diet and knowing there's still the possibility I won't see any difference.

Food & PCOS

Yesterday I started a food journal. Unfortunately I think my husband closed the document without saving it, so I have to re-create from memory. My meals were as follows:

Breakfast: 2 boiled eggs, 2 cups of coffee (yeah, I know) w/ creamer & Sun Crystals

Lunch: open-faced sandwich - 1 slice whole wheat bread, 1/4 cup cheddar cheese, 2 slices deli turkey, 1/2 cup spinach; pear; small tomato

Dinner: spaghetti carbonara (MFS*) - whole wheat pasta, turkey bacon, onion, garlic, eggs, vegan Parmesan

For snacks, I had 2 walnuts (really just grabbed them while I made my husband's granola) and a Special K protein bar.

So, what does that mean?

I did drink 3 Pepsis yesterday and about 40 ounces of water.

I know I should cut out the Pepsi, and I will. Still I think overall I did okay. I'm not sure about the pasta & bread; even if it's whole wheat, I think I still may to cut the glycemic load (which I'll discuss more in depth later, I'm sure). They're both classified as "moderate to high GI," so I may have to focus more on barley as a grain. What about quinoa? We use it on occasion, but I'm not as versed on how to cook it and have it turn out well.

The food information I've been reading about insulin resistance just isn't consistent at all. I'm hoping I can see a nutritionist who will use my current diet as a basis for making improvements, rather than giving me her plan for how I should eat. I don't want a different diet than the rest of my family. Small accommodations are acceptable, but I really want to work with what we already do.

*I'm sure I'll post other food journal entries, so let's just get this out of the way. MFS means "made from scratch." Almost all of our meals are MFS, but I want it to be clear that we're not talking about restaurant or frozen meals.

PCOS: Diagnosis Incomplete

My primary care physician said yesterday that he feels "all signs are pointing" to a PCOS diagnosis. PCOS, poly-cystic ovarian syndrome, is the leading cause of infertility in the United States. Official estimates suggest 4 to 10 percent of women of child-bearing age have PCOS. That's a lot of women. Yet what we know about PCOS is limited. We don't know the cause or how to prevent it. We don't know the full scope of the effects. We don't have a cure. It's not even really "manageable" because you cannot manage something you don't understand.

To be perfectly clear, even the diagnosis is a bit of a mystery. A number of symptoms + abnormal test results = diagnosis.

In my case, I'm not trying to get pregnant. I have 2 children, and I got pregnant with each of them in the first month my husband and I had decided to conceive. I don't have an overabundance of body hair in weird places - chest, toes, feet, back, face. Well, okay, I have 3 stray hairs on my chin, which have prompted many a "not by the hair on my chin-y chin chin" comments from my husband. One swipe of the razor, and they're gone.

I have not had a period in 11 months, however. Before that, I had a 4-month gap and before that a 6-month gap. Since I turned 30 this past May, it's unlikely I'm hitting menopause. Plus I have gained 60 pounds over the past 2 years for reasons no one understands. I get more sleep. I eat better and less. I exercise more. Nothing moves the scale toward zero. It just keeps creeping up, and one of the inexplicable things about PCOS is that there appears to be some relationship to weight. Does obesity cause PCOS? Does PCOS cause obesity? Are they intertwined parts of the same bit of genetic code? We just don't know.

My gynecologist ordered a plethora of tests 2 weeks ago and then said I needed to see our family doctor because my A1C was 6.4. For those of you unfamiliar with diabetes, an A1C test is a composite of your blood sugar rates over the course of two to three months. Normal is somewhere between 4.5 and 6, depending on the scale one consults. My doctor said he doesn't even think I qualify as "prediabetic," but I'm supposed to try to lose some weight. At least 25 pounds. Because that's easy.

I've made changes over the past 18 months to my life, and none has helped. My weight continues to increase, so my initial reaction was along the lines of "yeah, this will work."

Then last night I thought about it, and I decided that I'm going to find a way to manage the unmanageable. I'm going to determine how to live a full life with PCOS and not the sad, chubby existence that the literature all says is what I should anticipate.