Does anyone else just feel hopeless with PCOS?

submitted by medium_tomato from self.PCOS

I have been diagnosed with PCOS for about 6 years now. I've never really joined any communities or boards. I have however noticed that somehow most of my female friends in my age group (late 20s) seem to have PCOS or similar. But we don't talk that much about it.

I feel completely defeated and helpless with PCOS because of the circular nature of it. It makes you gain weight that is hard to lose but according to all the doctors losing weight is the only thing I can and must do. Not only that but I have to eat less and exercise more than the average woman. I have been on so many stupid diets and workout regimens. I am completely miserable and feel like crap just to lose like 10lb and then gain it all back. I was finally making decent progress but the pandemic hit and I once again gained back all the weight. Sometimes I just give up and tell myself fine I will just be fat my whole life, but I know I'm unhappy like this.

I am sick of doctors telling me all my problems are because of weight. I am 5'3 190lb. Yes I'm overweight but not everything is because of this. For fucks sake I'm trying SO hard to be healthy! I just don't know if I should give up or forever live the life of torture on 900 calorie diets so I don't get diabetes.

And then on top of all that I find all these trans idiots trying to say I am less of a woman because of this random condition? They can all just fuck off.

Does anyone else feel hopeless like this?

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[–]OrneryStruggle 4 insightful - 2 fun4 insightful - 1 fun5 insightful - 2 fun -  (0 children)

Yeah I'm at this point too. The pandemic restrictions here were severe and I couldn't see the doctor (I was supposed to get on metformin in february but haven't been able to contact a doctor since), go to the gym or purchase any home exercise equipment so I gained all the weight back I'd lost with great difficulty over the preceding year (some 40lbs or so). I had lost it by going to the gym and lifting heavy 5-7 days a week, other exercise and a really strict diet. I kept up the strict diet but the heavy lifting was obviously necessary to maintain the weight loss, and I have over 100 to lose (was misdiagnosed for 7 or so years and put on diets and medications that made me gain about a combined 70lbs on top of the initial PCOS weight gain). I feel like I will never claw my way out of this hole now. I used to be a model, do multiple very taxing sports at a competitive level, and most of my hobbies were athletic or active in nature. Now I have given up almost everything I used to love, I feel ugly and unwell all the time, and my constant severe insomnia/exhaustion have made me drift from many of my friends who still do the "fun" things I no longer can.

Recently gyms reopened and I lost 20lbs in under a month though, honestly on a torturous diet fasting completely 3-4 days per week, eating low carb/OMAD the other days, and working out heavily almost every day, but I'm trying not to give up. You probably shouldn't either because giving up seems more miserable than perservering.

[–]BettysBitterButter 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 1 fun -  (0 children)

How is your thyroid? Have you had it tested?

[–]jet199 3 insightful - 1 fun3 insightful - 0 fun4 insightful - 1 fun -  (1 child)

Frankly I think losing weight is completely the wrong goal for PCOS.

Rather look to get your insulin spikes under control and if you lose weight as a result then it's a bonus.

The trouble is that everyone's body reacts differently to different foods. https://www.sciencedaily.com/releases/2015/11/151119133230.htm So if you follow a diet which worked great for someone else the chances of it working for you are quite small. Then you have the problem that many diets try to fix that by outlawing all carbs when that's unnecessary and unsustainable.

You need to get yourself a cheap blood sugar monitor. Set aside a week or two where you are eating a different carb every meal (so cereal for breakfast, bread for lunch, pasta for dinner and a different set the next day) and 2 hours after eating check your blood sugar and everything that gives you a reading over 8 you need to cut back on. This means you'll have a whole set of carbs you can eat.

The trouble is with PCOS you have to work out your treatment for yourself, the doctors are so behind and don't care. This is why it feels hopeless. But once you start on the right plan for you it does get better. However it will take a couple of years of trial and error to get it right and get your body back to normal-ish health.

[–]OrneryStruggle 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 1 fun -  (0 children)

Not the OP but jumping on this, I have a home blood glucose monitor and my blood glucose is never above 7 for any reason, even after eating carbs. However, cutting refined carbs almost completely out of my diet has helped me a lot, so IDK if blood sugar readings are the best proxy for this. Trial and error with how I was feeling and my weight led me to eating low carb.

You are right that people react completely differently to different diets and doctors don't know shit about this disease, but it's so hard (even as a scientist myself who is able to read studies and cut through a lot of the nonsense suggestions) to figure out how to treat yourself, and it's very dispiriting.