Thin cyster

OK, now I know where I fall on the PCOS spectrum: I'm a thin cyster.

I can appreciate the pun here (for community support purposes). I can also appreciate that I found a virtual community of women with PCOS who are also thin here at the PCOS Support site.

Even though the following message below cut-and-pasted from the site may look bad, it gives me some questions to ask my doctor (also, this woman below just sounds a lot like me).

This is kind of negative, but this is what my RE said to me today:

Saw my RE today and this is what he said:
"About 33% of women have thin PCOS. Since you are thin, there is no environmental factor to it. You can't just lose 50 lbs and increase your chances of pregnancy like the other 66% of women with PCOS that have that environmental factors (weight, diet, etc.). So with thin PCOS, your infertility is all genetic. Therefore, it is a strong genetic factor against you vs. environment. Environment you can change, Genetics you can't. Most women with thin PCOS require more than fertility drugs."

I thought it was advantage being thin. I thought that automatically gave us that increased chance of getting pregnant that the overweight PCOSers get when they lose weight and that it was one less thing to worry about and one more thing on our side. Guess I was wrong!

So, even though I haven't reached any decisions yet about the next course of action to take, here is my list of questions I'm formulating to ask my doctor:

• What is my insulin level? Am I insulin resistant? If we don't know, if there a way to know based on blood work?
• Is my glucose high?
• If I am insulin resistant and/or have high glucose, can I control either of these factors by changing my diet, such as pursuing a gluten-free diet? Or is it better for me to go on a drug like Metformin? Or will changing my diet not really affect my chances of getting pregnant because I don't need to lose weight?
• What are the differences between Clomid and Letrozele/Femara (another ovulation-stimulating drug) for thin women? Is there any evidence that Femara is better at inducing ovulation in thin women than Clomid is?
• Is extended Clomid (an 8-10 day dose as opposed to 5-day) a possibility for someone like me, or is it necessary to start with a regular Clomid dose?

There is so much to learn, and I wound up getting two books yesterday at the library and ordering another book on Amazon. I want to be fully informed before I make any decisions, but at times like this I am grateful for the fact that I can email my doctor and she will respond to me quickly.

Where do I fall in the PCOS spectrum?

Seeing as it's 6 a.m. on a Saturday and I've been awake since 3:45, I obviously am preoccupied with this week's PCOS diagnosis. I am now in the hard-core researching stage, and I'm loving the fact that today I can go to my local library to pick up A Patient's Guide to PCOS: Understanding -- and Reversing -- PCOS. Because all the branches of my extensive local library system only carry three books about PCOS -- this one and then two other books that look rather out-dated -- I'm also considering purchasing PCOS and Your Fertility from Amazon. This book may be a nice complement to the book I'll check out at the library because this one combines anecdotes from patients and the author's personal experience to supplement the story.

I have been enjoying the fact that I can preview so much of each book I've been finding on Amazon -- I absolutely love this site feature. While scanning through about 20 books so far online, I've started to formulate a few observations, but there is one that stands out most particularly in my mind: I do not sound like the typical woman suffering from PCOS.

But before I go there, here are the things that make me typical:
1) I have the most tell-tale sign, irregular cycles.
2) I have high levels of testosterone (I still hate saying that).
3) I have been battling acne ever since I went off the pill.

And then there are the differences:
1) The first most obvious difference between me and the majority of PCOS sufferers is that they are overweight. Approximately 50 percent of women with PCOS are even labeled obese. My entire life I have been fortunate to have normal weight/I've watched myself to help maintain a healthy weight. (I give these two distinctions because while I may be genetically predisposed to be on the thin side, I am not just "lucky" in this regard -- I've also worked for it with careful eating habits and exercise through most of my life [until when I thought exercise could hinder my ability to conceive and I took a 5-month hiatus].)

2) Women with PCOS also write about how their diagnosis helped them finally understand their lack of energy. In previews I've read from PCOS and Your Fertility, the author asks you to check your energy level by asking if you are tired after a brisk 10-minute walk or if you're out of breath after walking up a flight of stairs. If we're using this as the measurement tool, then I can say I have plenty of energy. Even if the measurement was more rigorous, I guess I've always felt like I have more energy than the average woman I know.

3) A lot of women with PCOS report being incredibly moody and having severe mood swings. Maybe I'm giving myself too much credit, but I think I'm about as un-moody as they come. Yes, I have my moments like we all do, but I don't face extreme emotional ups and downs (except for, you know, the week I find out I have a serious medical condition).

So far I can relate to all PCOS sufferers when it comes to irregular periods. Even then, at this point, I'm glad to know that I am not like some women who go from 6 to 12 months or more without getting a period. I cannot relate to the weight control issues, lack of energy or moodiness. A lot of what I'm reading in book excerpts has to do with regaining normal menstruation by changing your diet. The main issue here is that I already abide by the general PCOS diet directions. There are, though, some people with PCOS who go so far as to follow a completely gluten-free diet. I definitely am not gluten-free, so that's something else I'll continue to investigate. Before I can really consider a gluten-free diet, though, I really want to know if I have insulin resistance. Some but not all women with PCOS are insulin resistant, so if I'm normal in this regard then going gluten-free probably won't help me restore regular ovulation. Looks like I have my first post-diagnosis question for my doctor.

Diagnosis

Today my doctor told me what I was about 90 percent sure I'd hear: I have PCOS (polycystic ovarian syndrome).

For a while now I've feared this is what I have and what's keeping me from getting pregnant. With anywhere from 5-10 percent of women of child-bearing age being diagnosed with this condition, it is the leading cause of female infertility. If you read message boards on sites like The Bump or Baby Center you quickly discover all these women talking about their PCOS diagnosis and how many rounds of Clomid their doctor has prescribed.

The thing that tipped me off to the fact that I probably have PCOS is the fact that I have such horribly irregular periods. Even though my periods were fairly regular before going on birth control, there is no known link between PCOS and the pill or any other type of birth control. PCOS can develop at any time for inexplicable reasons, and there's nothing you can do to prevent it. Irregular periods are a tell-tale sign of PCOS. Another sign of PCOS is elevated testosterone levels. Well, guess what: I have really high testosterone levels. This is not the kind of thing you want to find out about yourself at 5 a.m. It makes you feel, well, ugly and unfeminine. So, add high testosterone to infertility and you feel rather man-ish. (Also, women with high testosterone and PCOS tend to have trouble with adult acne -- which is true for me -- and tend to be confident, Type A characters -- which is painfully true for me.)

As I was going through almost all the stages of grief during my 15-minute phone conversation with my doctor and I was in my denial/bargaining stage, I asked her if my elevated testosterone levels could still be a sign of the birth control hormones exiting my body. She said that I am officially past the point of being affected by my birth control pills (which also contradicts the point about birth control maybe taking one year to exit my body). So, as much as I would now like to say that my body is still adjusting to being off birth control, it really does seem that I have PCOS.

There is no way to cure or even really treatment for PCOS. My doctor told me that her goal for me is to get a period once every three months, and if I don't get that, then I could face even more serious health issues. I have two main choices at this moment: I can do nothing and continue on with my irregular but not medically concerning long cycles, or I can start taking a medication called Clomid.

Clomid is a drug that increases ovulation. You take it five days in a row at a certain time in your cycle to stimulate ovulation. My doctor told me that I could try it for three cycles, and if the medicine didn't help me get pregnant in three cycles, then she would have me visit a reproductive endocrinologist. After that she mentioned scary acronyms like IUI and IVF which just made me break down and cry while talking to her. But, my doctor added that the chances of conceiving on Clomid are quite good -- and I've read reports that say anywhere from 50 to 75 percent of women with PCOS achieve pregnancy on Clomid -- but maybe she just wanted me to stop crying.

As with any other drug, though, Clomid does not come without costs. Besides the monetary costs, which wouldn't be that substantial (yet), there is a 5 percent increased chance of having multiples conceived while on Clomid. Additionally, because women on Clomid often do what my doctor referred to as "super ovulate" it can actually increase your risk of developing uterine cancer. It also sounds like -- through some anecdotal accounts I've read on message boards -- that many women who are on Clomid also face extreme mood swings and hot flashes, though obviously everyone reacts differently.

At this moment, I am just trying to process this information. I don't know if I want to take Clomid quite yet. My doctor told me that I can still get pregnant without Clomid, but with PCOS the chances of conceiving on your own are really, really low. For people with normal fertility, the chances of conceiving on any given cycle are only 20 percent, so when you ovulate as irregularly as I do, that just means I get about as third as many chances to conceive as the average woman. I also want to research insulin resistance, because that is a side effect of PCOS and some doctors prescribe drugs to decrease insulin resistance which can also assist in restoring ovulation.

Obviously, I need to sleep on this information (for probably more than just a night) and figure out what's right for me. My husband is totally supportive of whatever I decide; he's truly a great man, and I'm so fortunate to have him.