PCOS Journey

Hi,
I have a very similar story to yours, I too have just recently been diagnosed with PCOS and whilst my weight was reasonably well controlled when I was younger, the past few years have seen a fairly rapid increase just due to a less active job and having to do a lot more driving, whereas a few years back I used to walk everywhere I went. I've been married for two years now and came off the pill at the end of last year, to find that my periods were super irregular and have now stopped completely. I've been referred for a scan but haven't had it yet. I want to start getting healthier and lose weight, and the past couple of months I've started doing the Couch to 5K running programme which I'm amazed that I'm actually managing, although it's really hard. But I do wonder about the right things to eat...I've read that just eating at a calorie deficiency isn't the best way to lose weight with PCOS, although that's really all I've been doing with MFP. Recently I've started eating a lot more fruit and veg and tried to avoid bread and carbs; that's been helping. But I've seen some places that ideally we should be gluten free, dairy free and sugar free? That's pretty tough to do! Gluten free I suppose, no bread and a minimum of bread-based products, and obviously no refined/processed foods, but fruit really is full of sugar and whilst I'm getting along quite well with chicken salad for dinner I don't think I could survive on veg alone! Plus I do put a small amount of cheese on my salad just so that it tastes a bit more appetising. Sigh...I'm a bit lost. What sort of things are you eating?

I have PCOS. I will send you an FR

Hi,

I was diagnosed with PCOS. My family doctor referred me to a fertility clinic when my husband and I started trying to have a baby. There was a few things that the doctor did. Firstly I was put on a thyroid medication. PCOS can often cause an imbalance in your thyroid which can cause weight gain. It also affects your ability to get pregnant. I was also put on a medication to induce a period and then to help me ovulate. It seems like a lot, but funny story, I went to Paris, stopped taking all the meds because I was on holiday, and I didn't want to induce or ovulate, plus my husband wasn't with me, so really no sex equals no baby, so why bother medicating for that month? I came home after 2 weeks of eating nothing but bread and cheese and drinking wonderful wine, had sex and voila, pregnant. Point is my body did it without the meds. All those prescriptions were almost like a reset, giving my body the hormones it needed to do it by itself.

Out of all the infertility issues, PCOS is easy to manage. You will have babies, you just might need a kick of hormone to make it happen. The frustrating part is figuring out how big of a kick. In the meantime help your body out by being as healthy as you can while enjoying life. There is always a happy medium, if you cut out everything that you love, then what's the point?

There's a website about fitness that I read religiously, that talks a lot about fad diets, super foods, gluten free and dairy free diets, exercise and life in general. It's written by a Canadian named James Fell. He's down to earth, realistic and pushes the line in the sand all the time. it's refreshing, it makes me laugh, even if I don't always agree. He writes a lot for women as well. You should take a look. A ton of good articles about sitting to much (office job, driving) and how to change your idea about losing weight. It's www.bodyforwife.com

I have PCOS and was diagnosed in 1998 when I had a cyst rupture putting me in the hospital. At the time I was also suffering from high blood pressure, pseudo tumor cerebri, and fibromyalgia (though the fibro wasn't diagnosed until 2003). Then I had lost a lot of weight because of the treatment for PTC and no one could find anything "wrong" with me. In 2006, I got pregnant for the third time. Every pregnancy was always after a stint on birth control for the irregular periods. My blood pressure would always shoot up so I would have to stop them and BAM I would get pregnant. Anyway in 2006 I went into premature labor and inadvertently they realized I was spilling sugar in my urine. So then I was gestational diabetic taking insulin. After the baby was born my health was horrible. I had a severe lung infection that resulted in steroids for treatment for over 6 weeks. I asked the DR should I be checking my sugar since I was gestational diabetic. So now I am full blown diabetic. After all this I was close to disability and went back to school so I could get a desk job.During school I had to stop exercising and went from a size 12 to size 18. I haven't been able to get in the gym until this past Jan. After graduation I was healed 4 months later of the fibromyalgia.However my asthma and diabetes still were a problem. The drugs they gave me caused more problems..metformin, amaryl, byetta. My liver enzymes, cholesterol labs went wanky. The asthma meds caused my blood sugar to spike. Needless to say unable to lose weight. Up and down on the scale. So i joined the gym in Jan to get the drug pushing dr off my back and only lost 5 lbs by march, BUT my blood sugar decreased and my blood pressure decreased and cholesterol decreased. In May my mom had a heart attack and in June and July I was on vacation for 3 weeks. I didn't really "watch" what I ate and rarely got to the gym. I gained 10 lbs each week I was on vacation and when my labs were drawn in March everything was elevated and here come those drug pushing drs again. Since July I have been in the gym 4 to 6 days a week and I loose a few and then the dr put me on cholesterol med and gained 5. Stop that med lost the weight and they mess with my meds and i gained 9lbs in 24 hours. Took a week to get that off. I finally told the Dr off and do not plan on seeing another dr until I am sick. I am much healthier without them and their drugs. They tell me because I am diabetic the AHA recommends taking a statin even if your cholesterol is fine and they recommend a blood pressure med even if your blood pressure is good. I am VERY sensitive to medications and have a long list of allergies. Since I started going 6 days a week to the gym and went low carb my blood sugar is down 67-113 fasting and I have decreased my insulin 10 units twice a day!!!!!!!!! Exercise and eating low carb is key I think with insulin resistance and PCOS. And when I say low carb I don't mean Atkins low carb where you can only have 20g a day. Its more like 20 to 30 g a meal. And 15-20 for snack. A nutritionist had me eating 45g a meal and 15g for 2 snacks and I gained! And stay away from the processed stuff like mac and cheese and frozen dinners and pasta. I have been experimenting with a lot of recipes and making them low carb. Last night we had zucchini lasagna and it is the bomb!! My family loves the cauliflower rice I make and roasted broccoli ,roasted beets, roasted brussel sprouts and roasted cauliflower. We used to eat brown rice per the nutritionist recommendation and my blood sugar goes through the roof. It is a game we play and I have learned I am better off figuring it out on my own rather than taking some "qualified" person's recommendation. I hope this helps you!

I was diagnosed with PCOS about 10 yrs ago when I lived in england when my first husband and I couldn’t get preggo. We broke up (not because of that), I lost about 40-50 lbs and moved back home to america. When I was first diagnosed they put me on metformin…I stopped after a couple weeks because it made me soooo sick. Then I took angus cactus (vitex/chasteberry) and it made my periods regular within a month of taking it as directed on the bottle!

First time I had unprotected sex with my now husband, I got preggo! And have since had 2 more with him, no problems. The weight has crept back up and then some with each pregnancy.

Now the weight and ALL other symptoms are back with a vengeance.

I always say PCOS girls have to work twice as hard and for twice as long to lose the same amount of weight as a ‘normal’ person. Cals in/cals out isn’t AS easy a concept for us PCOS people. I think strength/weight training is the key for us….in addition to LOW sugar (I aim for 15g a day) and low carb (I aim for about 100g a day or 15%). And definitely take measurements. I’ve only lost 9 lbs in 9 weeks, but I’m already down a clothes size. Inches off is where you’re going to SEE the results more than on the scale. It’ll come, just slower!

Once you start losing, it will be much easier to conceive!

Good luck and feel free to add me, anyone! ☺

KBig14 - I'm fussy with fluids too. Absolutely addicted to diluting juice! If that isn't your thing I find sparkling water much better than still. You could try that with a splash of fruit juice in it or just on its own?

I think the biggest thing in terms of medication and cutting out/including certain food groups is that everyone is different! You just have to 'listen' to your own body when it comes to these things because what works for one sufferer might be the completely wrong thing for someone else! It's a lot of trial and error

I don't have time to properly reply right now, but I'm marking this so I can come back. I live with PCOS, and diagnosed in 2003. Will be glad to give more information, support and tips later on this afternoon! Welcome aboard!

Thanks for the drinks ideas mhairiannet and tennisgirl, that's really helpful! I was in the shop today for ages looking for just a bottle of something to go with my lunch and I ended up just picking up plain water cause absolutely everything was either loaded with sugar or sweeteners! On one hand, at least my willpower held and I did drink water rather than sugary drinks but it wasn't very tasty. I'll definitely be giving those suggestions a try!

I was diagnosed with PCOS about 3 years ago when trying to have my daughter. Hormone pills helped me get pregnant with her. I won't go into a lot of details, but in the past year they have come to the conclusion that's not my only problem (after multiple miscarriages ...)
My journey weight-wise has been like a yoyo - a combination of strength and cardio works really well for me to loose, but any pause of exercise and I gain quickly.
I say this just to encourage you to keep trying to find what works for you. Everyone is different, even with the same diagnosis. Don't give up, even through a rough journey.

Ok, I've got some time now to post! I read through all of your posts and am going to do my best to address questions and answer as I can! First, anyone who would like to add me, please feel free! I have most likely lived with PCOS my entire life, but was only given a formal diagnosis in 2003.

I had gone without a period for over a year, was sleeping for roughly 16 hours a day, and it wasn't REMOTELY enough, I had dark patches of skin around my underarms, between my legs, and around my neck, skin tags, I had lost so much of my hair that I was having to wear clip on hair, no matter what I ate- be it a salad or a Big Mac, I gained on average 10lbs a month, and I was constantly throwing up (NOT by choice, either). When my doctor ran my bloodwork, it was horrifying. I *literally* had enough insulin in my body for FIVE adults, and I absorbed none of it. My estrogen was extremely low, while my testosterone was extremely high. My body was slowly poisoning itself with insulin.

I began Metformin ER, first, in March of 2003. It made me violently sick. I often threw up after eating. It was helping my body to absorb the insulin that my body was producing. I HAD to be near a bathroom at all times, because this medication WILL make things come out one end or the other. For most women with PCOS, often times, Metfomin/Metformin ER is enough to help with IR (or insulin resistance). My body. where I had gone undiagnosed and untreated for so many years, was in horrible shape, and my pancreas was still pumping out just as much insulin.

In 2005, I was sicker than ever. My OB/GYN allowed me to be her guinea pig. We tried using the diabetic drug, Byetta, along with Metformin ER. The Byetta, makes my body ONLY produce the insulin I need to metabolize food, and then stops my pancreas from producing any more. Then, the Metformin ER makes my body absorb the insulin that is produced. With these two medications, for the first time in many, MANY years, my body properly metabolized food. It wasn't without side-effects. Byetta made me VERY, VERY sick for quite awhile. If I ate too much with it, meaning more than a very small portion of food, I became extremely bloated, would burp quite a bit, have an upset stomach for hours, or even throw up. If I could throw up, I'd feel a LOT better. I did get to the point where I wondered if the "cure" was worse than the disease, but I pushed on, because I knew I had no choice. I was going to die.

Gradually, things did get better. I learned to make sure to stay away from certain things that just didn't like me, but overall, I lived my life normally. I took my medications, I ate regular portions of food, keeping my carbohydrate count in check, stayed active, and over a period of 9 years, I've lost and kept off 175lbs. I was able to get pregnant without any fertility drugs, I didn't develop gestational diabetes, and gave birth to a full-term baby girl. I did a year's worth of research on Byetta and Metformin ER, both, before getting pregnant, and made the decision to stay on both throughout my pregnancy. I felt that was the right decision for both my baby, and myself, and she was born without any ill effects/defects from the medications.

For those who were asking about treatments-- there are FAR more treatments than birth control and Metformin. You can go from the natural route, which is Cinnamon Tablets/Pills, Flax Seed Oil, Chromium. and Vitamin E, to the medicinal route, which is not limited to: (Injections for IR)- Byetta and Victoza (Medications for IR)- Metformin, Metformin XR, Januvia, Janumet, Glumetza, just to name a few. Unfortunately there are a LOT of doctors that don't know enough about PCOS. Endocrinologist tend to know a little more, as this is an endocrine disorder, so if you have an endocrinologist in your area, and you're not happy with the care/treatment you're getting, I would look into getting an appointment with one.

As far as pregnancy goes, hang in there, sisters! It's definitely NOT impossible for us! Many times, what it takes is getting things in order- having all of your hormones leveled out will often do the trick. If you are currently having a monthly cycle, track it EVERY month. Even if you aren't, but you are having a cycle, track it when you're having one. Being here is taking a great, positive step, as everyone here is trying to do the best they can for their health by developing healthier eating and exercise habits. If after finding out your number (insulin, estrogen, testosterone, ect) and all of your hormone levels are normal, but you are still having difficulty, speak with your OB/GYN or RE (Reproductive Endocrinologist) just to make sure you don't have any internal issues you're unaware of (such as cysts on the ovaries that are interfering with egg quality or ovulation. I know I saw someone mentioning they were unsure about Clomid. I moderated a PCOS support group for quite awhile and everyone who took it was different. There are some who simply praise it for how it helped them, and couldn't say enough good things about it. There were others who hated how it made them feel, but were simply thankful for the end results. There were others who hated it altogether, as it made them feel horrible, and it didn't help them. It's a case by case basis, and until you try it, you simply won't know.

Weight loss wise. If you have IR (Insulin Resistance) this is something, I cannot stress enough, that you need to be correcting in the process. You don't *have* to be taking all of the medications I do, by any means, there are natural alternatives, which I mentioned above. Try to incorporate these into your diet by either food or supplement, and watch your carbohydrates. Calories for us don't mean much. It's the carbohydrates and sugar that make us pump out the insulin. Do what you can exercise wise. When you're first starting out, any exercise is good exercise! Slowly work yourself up. The weight didn't come on over night, so don't try to work yourself so hard that you get burned out, hurt yourself, or do something you aren't ready for. Work at your own pace. Another BIG thing- don't be afraid of food, or look at food as bad, evil, of that because you have PCOS that you can't have things you enjoy. There's absolutely NOTHING you can't have. You simply have to change around your lifestyle. You can make anything fit into it, it's making it fit correctly. No, don't sit down and eat an entire pizza, but sure, there's no reason if you go out with your friends that you can't have a slice of pizza! Or, it's your birthday! What fun is it to have someone sit an apple in front of you? It's not. Have a piece of cake! There are ways to make everything fit, it's all about portion and planning, and staying active. Drink your water, too. I saw someone mention they didn't like water. That's hard for this camel, here, to imagine, but I know there are people out there that hate it. Try some of the sugar free flavor packets! I have friends who do that and LOVE it! It's a great way to get your water in without the sugar or carbohydrates.

You ladies can do this! You can be healthy, and overcome this! I'll be glad to be of support to anyone who needs it, or answer any questions you may have!