As I posted a couple of weeks ago after four years of gaining weight without explanation, I was finally diagnosed with Poly Cystic Ovarian Syndrome (“PCOS”).  Based on the diagnosis, my reproductive endocrinologist sent me for an entire battery of blood work to determine treatment options.  Two hours, five different draws and twenty-one vials of blood later, I felt as if I had donated several pints of blood.  Then I had to wait to hear the results.  In the interim I jumped into the Atlantic Ocean to raise funds for Mystic Aquarium (and was the highest fund raiser, booyah), had arthroscopic knee surgery, spent a few days recovering and got back on the bike four days post surgery (again, booyah).

Post-Op.  Shaun insisted on taking this picture.

Post-Op. Shaun insisted on taking this picture.

After two weeks of waiting, I finally had my follow up appointment yesterday.  I was hoping for a magic bullet.  I wanted to doctor to tell me that my glucose and insulin numbers were a disaster, that my cholesterol was a mess and that I was pre-diabetic.  All of these things would have meant pharmaceutical interventions (likely in the form of Metformin) and the added side effect of weight loss, the best side effect in the world.  While my hormone levels confirmed the PCOS diagnosis, I exhibit none of the secondary side effects.  My insulin and blood glucose levels are fantastic, I have very low overall cholesterol and very high HDL (“good”) cholesterol and my cardiovascular health is fantastic.  The doctor attributed my high volume of exercise combined with my rather meticulous diet for controlling all of the normal secondary side effects of PCOS.  I am fat; I am in excellent health.

While most people would be ecstatic to hear this news (“hooray, I’m not diabetic”), I was devastated.  I don’t want to be fat.  I want to be fast and body composition is my biggest limiter.  The doctor recommended oral birth control pills to help regulate my hormones, but I told her I’m not going to risk additional weight gain that often accompanies oral contraceptives.  She then recommended an IUD, which I am having inserted next month.  I again expressed my concerns about weight.  While my hormone imbalances are likely contributing to my weight gain (in fact I started gaining weight when I went off birth control four years ago), as an endocrinologist she doesn’t have anything she can do to help treat this particular “symptom” (she did, however, say that she could help me if I decided I wanted to get pregnant).  She recommended trying a ketogenic diet as there are studies demonstrating that women with PCOS respond particularly well to this kind of diet and going back to my GP for a prescription diet drug such as Belviq.   

So, what do I do now?

I think its worth trying a ketogenic diet.  Right now because of knee surgery my training volume is very low, so a low carbohydrate approach is not a bad idea.  In addition, there are some pretty good resources out there on how to make training and a ketogenic diet work together.  If it doesn’t work, I won’t be any worse off than I am now.  I’m not sure how I feel the diet drugs recommendation.  I figure it is probably worth making an appointment to discuss it, but I don’t know that my doctor will actually prescribe it and I don’t know if the side effects will make taking it worthwhile.  The only truly concrete thing I can do is keep training, try my hardest and race smart.  I just wish that the way my body looks actually reflected how much time and effort I spend on my training and nutrition. Overcoming that particular reservation may be the hardest thing of all.

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Kelly Burns Gallagher

mccarter english employment litigator / oiselle team runner / coeur sports triathlete / sonic endurance coach & race director / witsup.com writer / dartmouth '02 / emorylaw '05

12 Comments

onecrazypenguin · February 17, 2015 at 10:32 am

I have a good friend with PCOS who was in a similar boat. She was practically symptomless except for her weight/body composition. As soon as she went low carb and gluten free, it was like night and day. No guarantees that it will work for you since everyone is different, but hopefully. Good luck!

lconn22 · February 17, 2015 at 11:09 am

Wow, Kelly. I know that aggravation. You want to hear the bad news, because at least it’s an answer. At least this “good news” came with a suggestion for a nutitional change. Good luck with it all.

Susan Downing · February 17, 2015 at 12:03 pm

It’s curious you noted weight gain when going off birth control pills 4 years ago, but feel hesitation to go on them for fear of gaining weight. (I get that gaining any weight isn’t desired). I started my IM training while on an oral contraceptive (unfortunately don’t remember which one) for the purpose of stopping periods all together as I didn’t want the complication while training. But staying on it while single didn’t make sense (particularly since it was contraindicated with my high cholesterol), so I stopped that after my race. Later (no longer single), I moved to an IUD (Mirena). I didn’t experience weight gain and finally actually had some weight loss that was desired and which had eluded me when training for my first IM. I want to share – TAKE LOTS of IBUPROFEN PRIOR TO INSERTION. Somehow that tip wasn’t shared with me and insertion was more uncomfortable than I expected. Best wishes to you.

    Kelly Burns Gallagher · February 17, 2015 at 1:01 pm

    I know my fear of gaining weight on BCP may be irrational but the medical literature pretty much states “expect to gain weight.”

    I was also advised by GYN office to take pre insertion ibuprofen. I’m hoping its not too painful and that things start to move in the right direction.

      thethinksicanthink · March 5, 2015 at 8:07 pm

      Actually, randomized controlled trials of OCPs have showed no change in weight compared with normal cycles/placebo — its generally all anecdotal and the weight gain is same as normal cycles. But, everyone is very different. I lost weight on OCPs but probably not from the OCPs but just being a resident and running around all day! But, I see you got the Mirena — hope you are happy with that! Hope you get answers and treatment – I know PCOS can be very frustrating – glad you finally got a diagnosis!

        thethinksicanthink · March 5, 2015 at 8:10 pm

        And the amount of levonorgesterol systemically absorbed from the Mirena is very very minimal – nil, in fact — the effect is local (uterus)! Hope she told you that. [FYI – I want to be a reproductive endocrinologist if you can’t tell! I’m in my 2nd year of OB/GYN residency]. Hope you’re getting answers and help! Best of luck!

Kecia · February 17, 2015 at 4:08 pm

I’m so sorry you are struggling with this!! I understand the unexplained weight gain, but mine has been due to hypothyroidism…I was just put on medicine starting last Saturday…we’ll see how my body responds to it in about 6 weeks. It is so frustrating and I hope you find the diet helps you so you don’t have to continue down this road. xoxo

Erin · February 17, 2015 at 8:51 pm

Wow, loads of similarities. Not PCOS symptomatic (except for very resistant weight loss and irregular periods). I fought it for a long time but finally went on Metformin and I’m glad I did, if only for making my periods like clockwork. (sadly, no weight loss). I’m also extremely hypoglycemic, borderline insulin resistant, and hypothyroid. Fun!

For my first IM, I ate loads of carbs and was pretty depressed that I only lost 10 lbs. For my 2nd IM, I switched to eating paleo and to really boost weight loss, I eliminated all sugar – even fruit. It wasn’t fun (and it wasn’t sustainable – I love fruit) but it did work. Over the long term, eating paleo keeps my weight manageable (I gain 10 lbs over the off season instead of 20).

Oh, and I also have an IUD. I have a very high pain tolerance and insertion wasn’t bad, but for a day or so after the cramps were pretty intense. And pretty much any menstrual cramps for a year. It gets better thought. I don’t regret getting one. However, I am not looking forward to getting my copper IUD replaced next year.

Deb · February 17, 2015 at 9:07 pm

While I do not have PCOS, Having an IUD fitted, for me, was awesome. I used Mirena and aside from zero periods for 5 years (yay!) I was actually able to lose weight whilst using it. The fitting was super easy, with minimal pain. You’re a tough cookie – it’ll be a piece of cake after all you’ve been through!

dwjones61 · February 24, 2015 at 3:33 pm

Wouldn’t having your ovaries removed be the best long term solution to your problem, especially if you do not desire to have children?

Dana · February 24, 2015 at 5:21 pm

I was diagnosed with PCOS ten years ago also. It brought to mind the time my grandmother told me that after she popped out 4 catholic babies in 5 years and her cycle never returned that she just assumed she had been a good catholic and did her due diligence of increasing the church’s numbers. I have been prescribed Metformin and experienced no weight loss side effects on that drug. I can say that if you enjoy a glass of wine (or a bottle) from time to time, DO NOT take the drug while drinking, you WILL regret it.

I have gone through a number of endocrinologists, all telling me different things. Some said I was fat because I have PCOS, others said I have PCOS because I’m fat. I have excessive facial hair and my periods come whenever the F they want. I have spent hours plucking, shaving and I have spent hundred of dollars on laser hair removal, only to be told “Oh, by the way, there is NO hair removal process that can stop NEW hair growth.”

Ten years and two unsuccessful rounds of fertility treatment later, I can tell you two things: skinny people are also diagnosed with PCOS and you can get pregnant if it is meant to be. On both runs through fertility treatment at Yale, I did not get pregnant in either of the 6 month attempts. A few months later I got pregnant with no drug therapy and later miscarried.

Some time has passed, that doomed marriage dissolved and I have been fortunate enough to discover a much better match and a much more rewarding occupation. We are expecting in July, no drugs, no therapy. If it is meant to happen, nature will find a way. Also, juicing and a mostly vegan and low GI diet help tremendously with weight maintenance. When your body has the nutrition it needs, everything functions better but I have not found any supplements or drugs in pill form to be effective, this body seems to prefer nutrition in food form. If you have a great deal of stress in your life, that can certainly exacerbate weight gain.

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