I'm an American with PCOS living in Germany

Hey everyone,

I was recently diagnosed with polycystic ovarian syndrome (PCOS). It's an endocrine disorder that disrupts your hormones and insulin process, causing problems like weight gain, hair loss, acne, and infertility and it puts you at high risk for diabetes, heart disease, and even cancer. I feel overwhelmed and disheartened by my diagnosis, but I'm doing my best to take charge of it instead of letting it control me.

Most people with PCOS are overweight, but there seems to be a distinct subtype that is not, called 'lean PCOS'- that's me. I've always been underweight. Now, I'm faced with a condition that requires me to really change the way I eat and exercise...I need to follow a low glycemic diet, sort of like a diabetic would. The problem with that is that diabetic diets, like most diets, are designed to help people lose weight, and I'm not supposed to lose weight. So, there is a big learning curve for me in figuring out how I need to eat and exercise to keep my condition at bay.

Two years ago my husband and I moved to Germany to do research. Everything is more difficult for me here because of the language barrier, and because of not having access to a lot of the things I was used to. I had to re-learn how to cook completely. Doctors visits are very frustrating, because I don't feel understood.

I'm trying to use the power of the internet to connect with others (who speak my language) and help myself get through this. Wish me luck!

Replies

  • Hi from America your homeland! I wish I had advise for you. I know nothing about what you are going through but I wish you the best of luck.:flowerforyou:
  • Hi,

    Won't be much help with regard to lean PCOS, but I am a German living in England - so am pretty good with both languages (though not perfect) - let me know if you need anything german-related explained or anything else in German - always happy to help :-)

    Best of luck
    Meike
  • Thesis_gut
    Thesis_gut Posts: 56 Member
    Hey,
    I know nothing about PCOS but I’m originally from Germany (now living in the UK) and I do research, too. So maybe if you need any language related assistance I could help? It must be tough to go on a diet if one shouldn’t actually be losing any more weight, but I’m sure with the right information it can be done. There are healthy but high calorie foods that have a low GI such as fatty fish, avocado etc. Maybe this can help too? http://www.glycemicindex.com/foodSearch.php - on the website you can search for specific foods or just list all food with low/high GI, sorted by type of food and country.
    Feel free to add me if you want.
  • Amcolecchi
    Amcolecchi Posts: 260 Member
    Hi! Try the site http://babyandbump.momtastic.com/ There are a lot of females on the site who have PCOS. Most are tying to conceive while others are there just to get in touch with more PCOS ladies. I hope you find some answers and even friends on that site!! Good luck hunny, I wish you all the best!
  • Welcome on board
    mobile app has a barcode scanner, a great tool
    Dealing with German language feels like hell, for first 3 weeks. and their medical terms are strange and funny, for first 3 weeks.
  • TLEIGH33777
    TLEIGH33777 Posts: 93 Member
    Unfortunately I have both. A lot of diabetics follow the "high fat low carb" diet. You may want to look into that.
    I have not really looked into much, because I am trying to lose.
  • DoomCakes
    DoomCakes Posts: 806 Member
    Good luck with your journey!

    Use MFP :) Track your food intake and all and set it for a weight gain goal. Stick to the glycemic diet but eat a bit more instead and continue to exercise so you don't gain fat. I'm sure you can do this!
  • pland54
    pland54 Posts: 132
    Wow, so many responses so quickly! Thanks for all the support, everyone. :smile:

    I've learned a lot of German since moving here (mostly food-related words :laugh: ) but things that are encountered less often, like doctors visits, are definitely a challenge. Cooking in a new country is surprisingly challenging, too....but I'm learning. I'm lucky that healthy foods like vegetables are cheaper here than in the USA.

    Very good advice about high calorie, low GI foods....I happen to LOVE avocados!

    As for you German folks, I really appreciate the offer to help me with translation issues!

    Because I've always been underweight, dieting is new and scary for me. Being underweight poses health risks just as being overweight does. I admire all of you who are dieting and exercising...finding the motivation to make healthy choices and deny yourself things you want is really difficult. I wish you all the best.
  • 73SJH
    73SJH Posts: 1
    Hiya - I have PCOS and my mum bought me these books when I was finally diagnosed about 8/9 years ago and I found both of them very helpful and they managed to put a lot of things into perspective - rather than the panic that I was doing at the time that I WOULD get diabetes and cancer etc etc, rather than I just have a slightly higher risk than average to develop....
    I don't have lean PCOS like you do, but they do outline how to eat and useful supplements and details about the various medication that can help if you're trying to conceive, cut down facial hair etc.

    http://www.amazon.co.uk/PCOS-Diet-Book-nutritional-polycystic/dp/0007131844/ref=sr_1_5?ie=UTF8&qid=1354286653&sr=8-5
    http://www.amazon.co.uk/The-Ultimate-PCOS-Handbook-self-esteem/dp/0007213255/ref=cm_cr_pr_product_top

    I wish you well with getting everything under control and a good balance in place. I know what you're going through and it's a little scary to start with - but I can promise after many years of not knowing why my body was acting so strangely (it had been since I hit puberty and lots of investigations had taken place, but only resulted with the PCOS diagnosing at 30!) it's good to know what it is and that there's fairly easy steps that you can take to protect yourself for the future.
  • GBOGH_5
    GBOGH_5 Posts: 174 Member
    I am very glad that I read your post. I was recently diagnosed with PCOS after I finally went in to the doctor for missing my period for 5 months in a row. I had some slight cramping symptoms, but contributed that to my endometriosis issues. After a vaginal sonogram, they found a total of 21 small cysts on my ovaries. Unfortunately my doctor is not great at explaining things, so after I went home and looked up PCOS, I was quite confused. If anything, I am borderline underweight. Don't have hair loss or anything. Some acne, but I contributed that to sweating so much at the gym. After reading your post about "lean PCOS" and looking this up, I think I have my answer! I had never even heard of lean PCOS!

    Thanks!
  • MacDHH
    MacDHH Posts: 34 Member
    Hi there, I am also an American with PCOS living in Germany. Where in Germany are you? Alas, I can't help you with the "not losing weight" part as I have the classic PCOS. That said, I do know that my endocrinologist in the US was a big proponent of low carb diets for PCOS, and he was even in charge of research about the link between diet and PCOS (I participated in some studies and in return I got free medical services when I was a student, which was great).

    I have not even gone to a doctor here yet, but I need to get on the ball with that, as I am way overdue for a checkup. I have two kids, so the infertility part of PCOS is luckily no longer an issue for me, and that is probably why I have been so lax about finding a doctor.

    My German is ok, so I might also be able to help you with some stuff. Also, if you'd like to connect with other expats, let me know, and I can send you an invite to internations, a social networking site for expats. I've used it in the other two places we lived in before Hamburg, and it was a great way to meet people. With the kids now, I rarely go to events as most of them are at night, but I know they do have them as I get the emails all the time.
  • pland54
    pland54 Posts: 132
    MacDHH, I'm living in Bielefeld. You're near Hamburg? I've been trying to learn a lot about the low GI diet....the info on carbs is confusing! It's like the old eggs argument....some say as little as possible, and some say you need some carbs with every single meal. :noway: How much carbs do you eat?

    Congratulations on your 2 kids....many women with PCOS have a lot of trouble conceiving.

    And, I'm always excited to connect with other expats!
  • pland54
    pland54 Posts: 132
    cybanez, I'm glad you found my post too! How are you doing with dieting and maintaining your weight (or maybe gaining a bit?)? It's confusing stuff.....
  • GBOGH_5
    GBOGH_5 Posts: 174 Member
    cybanez, I'm glad you found my post too! How are you doing with dieting and maintaining your weight (or maybe gaining a bit?)? It's confusing stuff.....

    Yes it is! I haven't done much regarding changing eating habits. Fortunately, I am not currently in the market for children, so I am not worried about fertility. I don't miss having a period. And, my pain in minimal. All of my other bloodwork seems to be fine, so I have just been continuing on with my normal diet and exercise plan.

    I am working on adding calories into my diet in the form of beer and wine on the weekends ;) TGIF!
  • pland54
    pland54 Posts: 132
    cybanez, I'm glad you found my post too! How are you doing with dieting and maintaining your weight (or maybe gaining a bit?)? It's confusing stuff.....

    Yes it is! I haven't done much regarding changing eating habits. Fortunately, I am not currently in the market for children, so I am not worried about fertility. I don't miss having a period. And, my pain in minimal. All of my other bloodwork seems to be fine, so I have just been continuing on with my normal diet and exercise plan.

    I am working on adding calories into my diet in the form of beer and wine on the weekends ;) TGIF!

    Haha! That's good to hear- PCOS is such a varying thing....glad to know it only affects you minimally. I generally had a lot less symptoms until I got off the pill...after that, all bets were off!
  • MacDHH
    MacDHH Posts: 34 Member
    Yes, I am right in Hamburg, actually (I know, my screen name is original!). I don't keep track of carbs. I know I should, given my PCOS (it helps with regulating my periods), but my focus is on losing weight at the moment. Since I am happy with my rate of weight loss this far, I'm just continuing with the calorie counting for the moment. I do try to eat enough protein, mostly for satiety and to conserve what lean muscle mass I do have. Because I have the kids already, I hope I can be more lax with respect to carbs, if you know what I mean?

    If I were you, I'd try to use the expat network and German friends/neighbors that speak English for doctor recommendations. We were abroad when I conceived my first, and I had a great doctor that all the other expat women used, and I fully credit her with getting me preggo. And because I then had a "history" already of fertility issues, it helped when we moved again and I wanted to get pregnant a second time, which made getting a referral to a fertility specialist easy. I've been impressed with the medical system here (at least what I've seen with my kids), so I think you should have no problems getting quality care.

    Mac
  • LMT2012
    LMT2012 Posts: 697 Member
    I feel your pain! Both myself and my older daughter have the condition. We each exhibit different symptoms, and they have been mild thus far. The only helpful advise i can think of is to look into meal replacement shakes. They have come a LONG way since the early days of Slim Fast. You can buy high quality powder online and have them shipped to you. There are formulations for vegan, lactose intolerant, low glycemic index, high protein and on and on. Good luck from Chicago!:smile: