Saturday, March 17, 2018

Losing at the Genetic Lottery

Thursday was a rough day.

I was all excited about all the lovely progress that I felt like I'd made, and I had my Fatty Liver checkup appointment with my doctor. I was all ready to be like, "LOOK! Look at how great I'm doing at this losing weight thing!"

The scale had other plans.

I took off my sweater, my booties (I am now the sort of person who wears booties, which is weird), and I waited for the slidey thing to go LEFT. But it kept going RIGHT.

According to the evil doctor scale, I'd only lost ONE pound. ONE.

Now, I know it was afternoon and I typically weigh myself in my skivvies in the bathroom when I get up, after peeing. So that could account for something. Also, to get all TMI on you, I had to use the bathroom and I've been having issues with regularity, and so I could not vacate my colon before the appointment and so that had to account for some poundage, right? (Sorry, that's gross. But also I was like, COLON, why can't you be ON MY SIDE, just this once?)

It was beyond frustrating.

I let my doctor know that my scale told a different story (although truth be told I weighed myself the day before in my skivvies in the morning after peeing and it was up a couple pounds, making the number more like 4 pounds of success). Thankfully he is not a weight shamer. He was like, "This must be really frustrating."

Which is when I went into a bit of a tirade about PCOS. I said, "I've been doing some research and it appears that PCOS and Fatty Liver are buddies. They go together. And PCOS makes it really hard for me to lose weight, so I'm not really sure how this is going to work..."

He agreed. He said, "Yes. PCOS and Fatty Liver are definitely related, and it is a difficult thing because the thing that is making you in need of losing weight is the thing that makes that hard. Maybe we should shift the target, maybe 20 pounds is too much to aim for. Maybe 10-15 would be better."

And then he told me a whole bunch of information about how my body hates me and conspires against me that I REALLY COULD HAVE USED WHEN I WAS FIRST DIAGNOSED WITH PCOS.

Did you know: 
- Women with PCOS tend to carry their weight in their middle (knew that one).
- When you carry your weight in your middle, it's not just under the skin. You can also store it IN YOUR ORGANS, notably the liver, and around the intestines, causing all kinds of mayhem.
- PCOS in general makes you more prone to diabetes (knew that) but Fatty Liver is sort of the precursor there.
- I always thought I wasn't insulin resistant, but apparently I am.
- My PCOS plagued body takes carbs and converts them into harmful things for my body, exacerbating my Fatty Liver situation.
- Because I have celiac, I don't eat a lot of carbs, but when I do they are REALLY carb-y (gluten free bread products are notoriously high in carbs and low in fiber).
- If I was a woman of the same weight or even much higher who carried my fat in my hips, thighs, and ass, I would not have these issues. It's the middle fat that is the problem.
- If I can't get my weight under control, I will need to go on a diabetes management drug like Metformin to help me out with the insulin resistance piece.
- So many women I know who have PCOS were put on Metformin as part of their IVF protocols. I WAS NOT. IT WAS ALWAYS POOH-POOHed.

I started to feel both sadness and rage building up inside me.

And then, he said, "Well, one thing we could do to help you out is take you off your anxiety medication if you are feeling better and think you could regulate better on your own. People on SSRIs typically have a very, very difficult time losing weight. If anything, I see people who put on about 10 pounds each time I see them and then they've gained as much as 100 pounds in not much time at all."

This is about where my eyes started leaking and I couldn't stop my lip from trembling.

"I don't think that's a very good idea," I managed to get out without totally bawling. "This time of year is the worst. Because, you know, March-April-May last year were sort of a shitstorm of awfulness and I'm feeling all that pretty hard right now." And then more feelings ran down my face and he passed me tissues. 

I mean, WHAT THE HELL? I would love to not be on meds, but I sort of think that anxiety medication is my friend. Bryce said "It is SHOCKING to me that you weren't on anxiety medication before last year. SHOCKING." Which I had conflicting feelings about, but it's true.

This is when I detailed all the things in my Plan that I've been doing, and how frustrating it is to make so many changes and not see the change in the doctor's office, and how PCOS is just sucky and evil.

And then he said, "Your genetics are really working against you here. PCOS is going to impact you your whole life. You will need to be very conscious about losing weight and maintaining a lower weight, because you are at a higher risk not only for diabetes but for cardiovascular disease, particularly blocked arteries. But it also makes it so much harder for you to do what you need to to be healthy. I mean, I'd call you pretty healthy -- your vitals are good [although my blood pressure was up, probably from the moment I saw the disappointing scale report] and you have healthy habits. Keep going and see me in 3 months, when the weather is nice you'll probably have better results."

That was when I couldn't stop crying. I mean, PCOS is one of many pieces that robbed me of having children, but it couldn't stop there, apparently. And I received very little counseling about how it would affect me longterm. Only how it affected my reproductive life. And when that ended, I didn't think much about it other than the face fur and the pudgy middle and the thinning hair. I wasn't like, "hmmmm, gotta watch for the diabetes and blocked arteries!" Because I didn't think that I was heavy enough to worry about that. I guess I was wrong. And I feel just a tad failed by traditional medicine. I mean, my doctor is great and he was very compassionate and gave me a bunch of information, but it's irritating to me that it took me developing a complication related to my PCOS for it to come up as an issue.

Also, in doing all my PCOS research, I wonder why I didn't do more of that when we were TTC, and wonder if some of the things I'm trying might have made a difference. The answer is no, because it's totally unproductive to think that way, and we had WAYYYY more than PCOS against us. BUT. It is interesting to find out so much about how my body works NOW.

It sucks to find that your infertility diagnosis is sort of trying to kill you. That you've known for sure about it since 2009, but not known just how awful it could be to the rest of your body until now. That looking back it was totally obvious that you had this from the time you had your period, and it was totally missed. That going on the Pill helped with the irregularity, but masked what was truly an endocrine disorder that is so much more than weird periods and infertility.

Grrrr. I went home and did my school work and started to cry. I was listening to sappy instrumental music while I worked, which didn't help, but the crying just wouldn't stop. It was gut-wrenching, grief-stricken crying that I haven't done in a very, very long time. My eyes were puffy and my voice was raw. I talked to Bryce on his layover as he was coming back from his business trip, and he was lovely, but I was just SO SAD. I did buck up and get myself off to the first half of the high school's production of "Hello, Dolly" before picking Bryce up at the airport, but in the morning I had to do creative eye makeup because I totally had frog eyes.

It is so frustrating to find that things totally not within my control or doing are influencing my life in such pervasive ways. I didn't ask for freaking PCOS. Are there worse things you could have? Sure. But right now I definitely feel like I'm losing the genetic lottery, and everything is just going to continue to be more difficult than it has to be.

PS - weighed myself this morning in my skivvies after peeing and my scale was back down... SEVEN pounds down from the starting point. So WTF? Is it just the morning versus the afternoon? I don't get it. And I don't fully trust it. 


  1. I swear, I weigh myself at home and it says one thing. And then I get weighed at the doctor's office and it says something totally different! Maybe the difference is a few pounds between the different scales and then a few more pounds difference between morning and afternoon, but it is still annoying. I am sorry for your frustrations. If you want to, stick with your plan. I think you have a good thing going.

    1. Thanks so much... it was so very frustrating! I am definitely sticking to the plan, and upping the exercise part. Because cheese. :)

  2. So.. when I was attempting to lose weight, I'd weigh myself several times a day and look for the trend (min/max/average - it doesn't really matter). Because there's some inter-day variation and intra-day variation. And it's helpful not to get stuck on a single number. Ofc then I become this data obsessive crazy person so there's that.

    PCOS is like some double/triple whammy because the same things for which it helps to lose weight also make it suuper hard to lose that weight. I'm sorry, its just a hard shitty process.

    I'm not sure if this will help but based on personal observations from the last few weeks, I think for me to lose weight, one way that ought to work is to go low carb (not like keto- level but lower than usual). My guess is that it has something to do with the insulin resistance that comes with PCOS?

    1. Thank you so much -- yeah, there's definitely fluctuations depending on the time of day, the day, the clothes, the I think I'm going to just trust my scale at home since the starting point was the same. And hopefully the next time it will be way lower at the doctor's office.

      Low carb is DEFINITELY helpful, and I've been doing a lot of swap outs and watching my consumption of grains. We've been doing a lot of cauliflower-based things. Surprisingly tasty, those swapouts. Low carb is definitely beneficial for PCOS. I'm a carb monster though so it's been an adjustment! (Also had me some blueberry pancakes this morning, so there's that...)

  3. I don’t trust scales for this exact reason. They are never calibrated the same and one in the doctor’s office does NOT accurately follow what is happening. One scale for all future weigh-ins in my opinion.

    In addition, I share your frustration about PCIS and how little focus the medical community takes for it being a LONG-TERM HEALTH CONDITION!!!! It’s a major failing that this industry has as they conparamentalize instead of acknowledging the connections.

    And on that note, bravo for refusing to go off your anxiety meds. That was such a stupid suggestion and I’m glad you spoke up.

    As far as genetics, this is where I’m pulling my hair out. Yes, we know this disease is heritable, but we know next to nothing about the players and the genetic network. And don’t get me going over environment input.

    Hugs to you and keep up your hard work.

    1. You know the surprising thing? Until I hit fertility treatments, I hadn't even realized that it was a long term condition. None of my doctors had ever sat me down and explained exactly what was going on.

    2. Right? WHY don't they do things for this? It makes me so very angry. Argh, medicine.

    3. Cristy, yes! I don't understand why the medical community is so head-up-arse about PCOS and the implications for everything, not just pregnancy attempts. I am thinking of supplementing with a naturopathic doctor because it seems they connect a lot of the dots (maybe because they don't have the pressures of insurance claims? I don't know...). And yeah. For the love. I bet he rethought that thought as soon as my eyes welled up... Sheesh.

  4. Ugh. So crappy. All of it. I’m so sorry.
    I agree with Cristy that going off your anxiety meds is a very bad idea, at least right now. Maybe down the line that can be something to revisit, but definitely not now.
    Also thinking that maybe seeing a specialist who can help you understand and treat PCOS might be a thing to do. I know, an RE which I am sure you don’t want to even go there, but someone more specialized than your PCP. (Not that he isn’t great and amazing or whatever, but not his specialty) There are plenty of strictly Hormone Specialists (many naturopathic ones) who have a very good grasp on conditions such as PCOS and the far-ranging issues that causes, and maybe you can find some understanding and help there that can benefit your whole self. Just a thought.

    1. Thank you so much, I am actually planning to branch out into naturopath territory. Also, my new GYN does hormonal disorders, too, so I'm hoping that he will have some insight as well. But yeah, a hormone specialist would be great! No REs though. Blech, I have PTSD whenever I pass near the EXIT where my old one was. Blargh. Thanks for the great ideas!

  5. Gah. Stupid PCOS. I'm sorry it's slapping you around even now.

    Hey. I wonder if you'd be interested in visiting an ayurvedic doctor in your area (assuming there is one). I found a few years ago that once I began to eat for my body type (a diet that might not look good to western docs because for me, a vata, it's high in oily and sweet foods [not refined sugars]) I just began to feel better, move better, eat better, function better. The idea is that eating for your type reduces inflammation.

    I suspect you are at least part kapha, which would mean you are grounded (unlike me, who needs to eat groundy/earthy foods like squash) and need to eat counterbalancing dry and hot foods and stay away from groundy foods.

    Here's a link I found for a kapha diet and a test you can take.

    Word of caution: people often crave foods that put us further out of balance. But once you find balance, inflammation subsides and flow returns and you live more in a state of ease rather than dis-ease.

  6. This is all crappy, indeed. I'm glad you're very sensible about the anxiety meds, knowing that it is not the time. Good for you.
    My niece is dealing with PCOS, and although she's managed to lose a lot of weight in the last year, she's still dealing with other issues. It really does affect much of her/your life, and I feel for you.
    And yes, I know the feeling of wondering why you cana't catch a break. As if infertility doesn't have a big enough impact on our lives, we find these other health issues. It sucks. So sending more hugs.

  7. I wouldn't worry too much about the discrepancy between your scale at home & the one at the dr's office. For one thing, two different scales. For another, I don't know about you, but I always weigh myself at home first thing in the morning before I've eaten, in my nightgown or preferably nothing at all. ;) Clothes definitely add weight -- my first Weight Watchers leader always said that if she had her druthers, she'd do all her weigh-ins wearing chiffon. ;) And yes, the bathroom makes a difference too. I once did my WW weigh-in both before & after a bathroom visit, and for me, it was worth another half-pound off. ;)

    But yes... I found it maddening that my fertility doctors could be so vague about stuff that could definitely impact not only my odds of getting & staying pregnant, but also my overall health. I was told my bicornuate uterus was nothing to worry about (!!) -- but the more research I did on my own, the more angry I got... not only does a uterine abnormality definitely increase your odds of miscarriage, but there is a high correlation between uterine abnormalities & kidney issues (which I had as a child). I keep wondering whether the drs who treated my kidney issues as a child saw anything abnormal about my uterus back then. My mother told me (when I was pregnant) that she was told I might have a "hard time" with pregnancy -- but I assumed she/they meant pregnancy might put a strain on my kidneys. Now I wonder if there was more to it than that.

    By the way, I was never tested for either PCOS or endometriosis, but sometimes I wonder...

  8. Oh hon, sending a hug because it's awful. It's so frustrating to be taking care of yourself and not seeing the results.

  9. Jess, I am so sorry you have to bear all of this. I personally hate scales...especially those damn doctor scales. I believe that if your home scale shows a loss in relation to your initial weight on the home scale, that loss must be true. So there, evil doctor scale. As for diabetes and heart disease, sadly it is all over our family. One of your uncles has had two heart attacks since age 45, and another had diabetes when he died of cancer. Shitty genetics, indeed. Kee fighting the good fight. In spite of all the overwhelming obstacles, you are one tough fighter. Strength and honor! (To quote “Braveheart”)

  10. Here from Mel's round up- I have been meaning to comment on this post for close to a week now. I have PCOS too (I am in the group that isn't usually overweight and doesn't have insulin resistance) and I've found that I know more about it than most GPs and even most REs in terms of the long-term implications. When we'd decided to stop treatments, I went to see my GP and asked her how I would manage the PCOS for the rest of my life and her response was "Oh we'll just put you on birth control until you're 50 and then we'll take you off and see if you go into menopause".

    I felt this was an unacceptable approach (on SO many levels!) so I started doing my own research. A friend sent me a link to this study: and I adopted the diet suggestions.

    I ended up kickstarting my menstrual cycle (which had never functioned without medical intervention since I'd been a teenager) and when I continued the diet and took out dairy before I ovulated I moved my cycle into 'normal' range for length.

    Long story short, our second child is a direct result of that diet change. The really freaky thing is that my period came back when she was 18 months old (even though I was still nursing) and I've had a consistent 30-32 day cycle for the last three months, even though I haven't been following the diet. I suspect that dairy is still affecting ovulation, as my shortest cycle was when I cut out dairy intentionally as soon as my period stopped, but it doesn't seem to be having a big impact. It's like the diet change reset my body and realigned hormones to the extent that my PCOS isn't as big of a factor.

    I want to emphasize here that I am NOT trying to tell you what to do or suggesting that if you had made diet changes your infertility path would have resolved differently. I would feel terrible if anything I wrote made you doubt your actions. I've gone into detail here because I think diet is incredibly important in managing PCOS and doctors don't understand it yet, especially the impact of dairy. When I told some of my friends with PCOS about what had happened, they all said that dairy affected their cycles too. I shared the link in case it's an avenue you want to investigate for yourself. I have a bunch of posts about it on my blog and please feel free to email me too.

    Hang in there, and don't trust the scales (especially the ones in doctors' offices- those things are evil).

  11. Every scale is different so I would trust the one at home because it the more consistent number. Even two scales at the doctor's office could be calibrated differently. Yes clothes make a difference, yes weighing yourself in the afternoon after you have had water and food makes a difference, and yes pooping beforehand would also make a difference!

    Samantha Bee just had an excellent piece on funding for research on women's issues like PCOS and endometriosis is so low compared to how many women (1 in 10) have those diseases. And how drs throw birth control at you because there is nothing else (that we currently know of) that helps. She rocks.