Lean PCOS - in need of help, and a hug

So hello all

I hope I can find some advice, or maybe even someone in the same situation as me....

I am 27. When I was younger (14 yrs old) I was overweight and INCREDIBLY spotty. I had heavy, but only slightly irregular cycles from 12.

The doctor put me on the pill at 14 to combat the acne. Eventually everything settled down, but I was on the pill till I was 25 with fairly 'normal' periods (still missed a few)

Around 24 years old (still overweight) I decided enough was enough and set about sorting my weight out. With diet and exercise I went from 13 stone to 8 (did dip down to 7 but only briefly before I built up some muscle tone). I then decided to come off the pill at 25, all as part of my body cleanse. I didn't want to be taking ANYTHING.

And my periods stopped. And never came back.

Since then I have been diagnosed with PCOS. Various theories such as me loosing weight too quickly (which is crap - as I did it over 3 years) and diet being 'disordered' have been thrown about. The doctors say unless I want to have children (which I must do before 35 or there will be no support through the NHS as I will be old and past it by then) there is nothing they can do for me and have 'signed me off' with a tablet to give me a cycle every 3 months to protect against cancer.

So - after everything I've since read, I believe I have had PCOS since puberty and accidentally treated with the pill at 14 years old.

When diagnosed with PCOS, I asked to try Metformin as I believe I have IR but I have been on Metformin for 6 months, and no change. I recently asked for all my records and found that my blood showed signs of mild neutropenia (low white cell count, and results pointing towards a Vitamin B and folic acid deficiency) so I have started myself on a vitamin supplement, but only very recently.

I am currently around 9.5-10 stone (stopped weighing a long time ago as I lift weights and my weight is pretty irrelevant to me) and eat very healthily. I exercise for 20 min 4 times a week, nothing extreme, but I find if I don't I pile on the pounds at an alarming weight (symptomatic of PCOS)

My questions to you all are

- I have read a lot about low carb/moderate protein/high fat diet. I currently eat low carb/low fat/high protein diet - should I look at changing this?? Any success stories? And what kind of fats? I assume we're talking 'healthy' fats.

- Any lean PCOS people out there - i.e. not needing to loose a lot of weight, but maybe like me, heavier round the belly (symptomatic of PCOS)

- Any vitamin/supplement suggestions?

- Any diet suggestions for lean PCOS...

- Really... any help full stop - I am at the mercy of doctors who don't want to help me, or investigate further. I am contemplating going Paleo, any thoughts on this...

- I am also worried about uterine cancer having read some posts on this...

- A hug would also be nice...being told I have 8 years to find someone, settle down and have children (speaking as a single who had visions of going back to Uni for 3 years and not thinking about children etc) have scared the bejesus out of me.

I really hope someone out there might have some experience with the same situation. I just feel after putting so much hard work in to loose the weight and eating right I have received an almighty kick in ovaries for my trouble.

In hope,
Sal

Replies

  • Psychgrrl
    Psychgrrl Posts: 3,177 Member
    (((((HUG)))))

    Sorry you've had such a rough go of it for such a long time! But, you've named the beast now and can really get started about taming it! :)

    Have you asked your doc for diet advice? Or maybe a referral to an RD? Here are a couple links that may provide some helpful info:

    http://www.mckinley.illinois.edu/handouts/pcos.htm

    http://www.eatright.org/Public/content.aspx?id=11182

    http://texashealthmoms.blogspot.com/2012/07/best-eating-plan-for-women-with-pcos.html

    http://www.drnandunne.com/?p=1808

    https://www.pcosdiva.com/category/blog/supplements/

    http://www.webmd.com/vitamins-supplements/condition-1956-PCOS.aspx?diseaseid=1956&diseasename=PCOS

    As for the settling down and having kids, please try and focus on yourself and your health and not on the "deadline" you've been given. Eight years is a long time! I find there's peace in knowing you can't control everything. You do what you can with what you've got and let things fall into place. Hang in there! :)
  • maybe2m
    maybe2m Posts: 18
    Hello! Dropping in from the US to give you a big ole ((((((HUG))))))! I lived for many years with PCOS. I voluntarily gave up all those parts a few years back due to it. I believe there is just not enough known accurately about this disease for doctors to give great clear advice. The irregularity of your periods thru adolescence is a good sign that you have always had it. I know in my case it is hereditary, pretty much every female on my mom's side had symptoms of it, even if not diagnosed years ago. Insulin resistance does seem to go hand in hand with it. I don't have much in the way of advice on how to lose weight with this as I was never overly successful for any period of time. I will give you some thoughts though on the timeline you have been given.....it seemed for me and many in my family, that the more we stressed over it, the less apt we were to conceive. Relaxation seemed to be a very important factor in that process. It took me many years, but I have 2 beautiful children, both whom were conceived when I finally "gave up" and wasn't thinking about or trying to get pregnant. I wish you luck and health in your future!!
  • macchiatto
    macchiatto Posts: 2,890 Member
    (((HUGS)))
    There is a PCOS group on here that you might find helpful.
    I am also a lean PCOS with the characteristic PCOS belly. I got down to my initial goal weight and lost another 8 lbs below that but still have a really disproprotionately flabby belly even though I've gotten fairly slim elsewhere. It's frustrating.
    I'm sorry you're having a hard time getting the medical care you need. :( That's also a bit crappy IMO that pregnancy care is only covered through age 35. No pressure or anything. :/
    I haven't really done anything to treat my PCOS other than going lower carb and exercising. I also went off the pill and the ring since I didn't like the side effects. (I use FAM to avoid, which has a high effectiveness rate if you follow it correctly.) I know a lot of people who are on Metformin but haven't tried it myself. I know a lot of people take cinnamon or other supplements but again, haven't researched them myself. A number of the ladies on the PCOSis group here do follow a low carb/moderate protein/high fat diet. Mine is more moderate across the board but I've thought about trying it their way to see. ;)
  • salbags2
    salbags2 Posts: 11
    Thank you so much guys. Just getting the support and suggestions, and knowing I'm not alone is great. I will check out the links, and the PCOS support group.
    Been for another blood test this morning - this time to look at blood sugar levels for past 5 days.
    Thank you,
    Sal
  • Mich4871
    Mich4871 Posts: 143 Member
    I can't help with you the diet thing... but I just want to say, that yes, it can be harder to conceive a child, it's not impossible. Please don't put a time limit on it.

    I have PCOS, didn't meet my husband until I was 33, got married 18 months later and didn't have my first child until I was 38, my 2nd at 39.5. I did need help to get pregnant, but I did.
  • salbags2
    salbags2 Posts: 11
    Thanks Mich,
    The time limit is really set by the NHS. I would have to go private to get the drugs after 35 years old.
    x
  • Helloitsdan
    Helloitsdan Posts: 5,564 Member
    I have a few questions.

    I do have a couple clients with PCOS but each is different BTW.
    Also a wife with extreme endometriosis. ;)

    How is your sleep cycles?
    How is your stress management?
    How is your libido?
    Do you lift weights or mostly cardio?
    What type of diet are you following and how much are you eating per day?
  • Etherlily1
    Etherlily1 Posts: 974 Member
    ((((HUGS))))
    I understand on the medical front. I had a recent hospital experience where I was having characteristic pain of a rupturing cyst and mentioned casually to a nurse as I was asking for a tylenol to take the edge of it off, and she snapped at me. She demanded to know how I knew I had PCOS and who diagnosed it. It is what I was taking the metformin for that they were giving me. All I wanted was a tylenol and got a lecture that I couldn't possibly know what was going on with my body if some doctor wasn't telling me what was going on. She seemed convinced that it had magically disappeared overnight because I was on a med that helped control the development of cysts.

    Another med I have been put on to bring back my periods, granted they are light and short, is provera (medroxyprogesterone). When my periods would stop as a teenager they usually gave me a shot of 500 CC of progesterone in each butt cheek to bring them back. They also did the same thing when I had dysfunctional uterine bleeding that I nearly bled out from.

    There may still be other treatment options out there.
  • salbags2
    salbags2 Posts: 11
    Thanks for the replies. Dan...

    How is your sleep cycles?
    - 6-9 hours per night. Average 6 cycles per night.

    How is your stress management?
    - Stress is fairly low, only stress is the PCOS ironically! But I am a 'worrier'

    How is your libido?
    - Low

    Do you lift weights or mostly cardio?
    - Weights and cardio. I mix up interval training (weights range between 4-20 pounds) with yoga and running

    What type of diet are you following and how much are you eating per day?
    - Low carb, high protein, moderate (good) fats. Average 1500 calories per day, but I have days when this can be over 2000 or closer to 1200. Never less than 1200. I find if I eat 2000 every day I put weight on very quickly.
  • salbags2
    salbags2 Posts: 11
    By the way I have low estogen, other hormones basically in 'normal' levels.
  • euronorris
    euronorris Posts: 211 Member
    Thanks Mich,
    The time limit is really set by the NHS. I would have to go private to get the drugs after 35 years old.
    x

    NHS help is limited (and time limited), but private care is a possibility too. It's not cheap, I know, but 8 years is a long way away. Things could be very different for you by then, both with regards to settling down, and your finances. Basically, you can't predict what will happen between now and then. But.....if you are worried about it, you could start a small savings pot, put a small amount in each month, and have it as your 'plan b' pot. If you need it for fertility treatment, you'll have it ready. If you don't, you can use it on home improvements, or a holiday etc etc.

    Also, big ((HUGS)) x
  • Irma77torne
    Irma77torne Posts: 14 Member
    First of all big hugs!

    I know what you are going through!

    Second:

    Are you sure about the 35 y/o limit to get fertility support on the the NHS? If it's true I'm in serious trouble.

    I'm 36, currently living in Edinburgh and been trying for a baby only since this past January, I went to see my GP because my cycles are super long, I was having sugar crashes and told him I was diagnosed with PCOS in my early 20's back at home in Spain. My GP wasn't impressed at all, he told me to that after so many years of birth control it might take a while to come back to normal and keep trying the "traditional way", he didn't mention any diet, or losing weight, jut to be careful not to gain and to come back in 6 months if I don't get pregnant.

    The made me some blood tests which they came out fine (???!)

    Since then I'm trying to eat low GI and exercise regularly, I'd like to drop 10 kg, but after losing 2 kg I reached a massive plateau, I don't know if it's because I haven't had a period in 52 days and I'm retaining liquids.

    Anyway, have you checked the NHS website? I can't find the 35 limit thing anywhere on the site.

    http://www.nhs.uk/chq/Pages/889.aspx?CategoryID=54
  • pennyllayne
    pennyllayne Posts: 265
    Firstly, to comment on the having kids side of it, I'm 31, still single so that leaves me a lot less time to have a child than you. But the way I see it is that if nature has decided we're not meant to have kids then we should just accept that instead of taking unnatural measures to have one. There's nothing to say that we CAN'T conceive after the age of 35, just that the NHS won't help with IVF after this point. So don't let yourself freak out about finding someone before you're 35, you just have to let nature take its course.

    That's pretty extreme that your periods never came back, but I find when I go off the pill it takes my body some time to get back to more regular cycles. I have been on and off the pills since I was a teen too, and even though periods disappearing altogether is quite drastic perhaps your body has not been able to get back into a regular cycle because you haven't ever given it the ability to get into a menstrual rhythm without synthetic hormones. This may be something you want to ask your GP about though, it just seems to make sense to me seeing how my periods take so long to get back to normal after I stop the pill. This last time it took me 2 months to get a period and I only take the pill periodically to try and help the acne side that I still struggle with!

    Also, metformin doesn't help for everyone with PCOS. I tried it and it did nothing for me and many people don't experience any improvement in weight loss on it. It's mainly used in type 2 diabetes to increase insulin sensitivity, but this doesn't mean it will have any bearing on weight loss. You have to remember that IR doesn't automatically mean you can't lose weight because insulin is not the only factor in weight loss. People with type 1 diabetes can't produce insulin, yet being overweight isn't a main problem of that form of diabetes. Rather, overeating and being overweight causes IR and not the other way around. So becoming more sensitive to insulin (while very important to health) does not automatically mean you will have an easy time losing weight. However, studies have shown that women with PCOS have lower BMRs than women without PCOS and women with PCOS and who are insulin resistant have lower BMRs than women with PCOS but don't have IR.

    My question would be; are you currently trying to lose weight or maintain? I don't know what your BMI is so I can't tell whether you are within a healthy weight range or not.

    I currently have a BMI of just under 26 and believe me it has not been easy getting here. I don't have a ton of weight to lose (another 7 and I will be within a healthy BMI). I found low carb to be the most helpful for me, but not very low carb so I don't recommend that. Our bodies preferentially store carbs as fat which is why we need to workout a lot of we're eating starches regularly but I keep my carbs to about 100g or under.

    As far as protein and fat goes, you don't want to be low fat and high protein for too long. Protein is great for keeping blood sugar stable and keeping you feeling fuller longer and it also uses more energy to digest than fat and carbs, but it is not an efficient source of fuel for the body as its primary use is for growth and repair. So unless you are working out a lot, I would say you don't need to be going over 100g a day. Then the rest should come from fat. Fat is a very efficient fuel source for the body. When it comes to low intensity and longer periods of activity, fat is the body's preferred fuel source. And yes, most definitely healthy fats. This includes saturated fats such as grass fed butter, coconut oil, animal fats as well as avocadoes, olives and olive oil, nuts and omega 3 fats as found in oily fish. You want to ensure you are getting enough omega 3s in your diet and limit intake of omega 6 fats as found in conventionally raised meat and poultry and processed seed oils like sunflower oil and canola oil. Also only use saturated fats for cooking as other fats are unstable at high heat temps and cause oxidative damage in the body (not good for cancer!). You also want to avoid overcooking or charring food - try steaming, light frying, boiling as much as possible.

    As far as vitamins and supplements go, there are SO many that have the potential to help with PCOS. there is a company called Insulite Labs who produce a specific range of supplements to help reverse PCOS. It's very expensive and they are based in the US so you'd have to pay shipping and customs charges but if you have the cash then it might be worth a try. Unfortunately they don't offer a money back guarantee as far as I know and I have tried the product but I'm afraid I wasn't at a stage in my life where I was prepared to change my diet and it was a complete waste of money and I saw no change which is no surprise considering I was eating so much sugar and junk on a daily basis. You are in a much better position than I was. So that is an option, but only if you can afford it.

    You might also want to try a supplement with chromium and cinnamon extract as these things have been found to help with blood sugar regulation and carb cravings that come with PCOS. You could also try adding a teaspoon of cinnamon to your tea or coffee every day or to yoghurt. I don't really suggest a fish oil supplement as they don't seem to be as effective as the whole food sources of omega 3s, but these type of fats are believed to help with insulin sensitivity so as mentioned above try eating more oily fish at least twice a week.

    Those are all the suggestions I can come up with at the moment. But you say you have low estrogen which is actually a good thing as far as cancer goes. Maybe have your thyroid checked out as if you've been dieting for a while your thyroid levels tend to plummet as well as leptin levels, making weight loss or maintenance even harder and a break with eating at maintenance and upping your carbs a bit to over 100g may really help you.

    The last thing I would say is that if you're within a healthy weight range but just want to lose weight to look better, it might be a bit unrealistic to expect your body to maintain at a weight that is not natural for your body. I find that I can lose weight but my body fights back very hard and I can rarely maintain at a healthy weight, so I think it would be wise to set up some realistic expectations of your body.
  • salbags2
    salbags2 Posts: 11
    Penny and everyone else (feeling the hugs!)

    Thank you for your detailed reply! I will add a few extra notes:

    I haven't had a natural period for over 2 years - I take progesterone intermittently to force a period (this means that although it is low I do have enough estrogen to have a period) This is to protect against cancer.

    I self-prescribed Metformin, as I my blood sugar is always at the very top end of normal, although not diabetic levels

    I am not trying to loose weight. My BMI is around 22. I am maintaining at the moment.

    I eat very healthily with plenty of variation and lots of fresh fruit/veg/nuts/seeds/lean meats etc. Form your and other peoples suggestions, the only thing I might be worth tweaking is my fat intake. I have started taking an omega supplement. I do eat lots of oily fish as well but could up this a bit, and perhaps my carbs.

    Irma - re: 35 limit, it's not something they broadcast widely but my GP says that this is when they can say 'no' if you ask for help to conceive when you have PCOS. Also, if your partner already has a child they are even less inclined to help. Best speak to your GP about it.

    Euronorris - good idea! A baby pot!
  • kagevf
    kagevf Posts: 509 Member
    (((( BIG hugs ))))
  • dxwatson2
    dxwatson2 Posts: 69 Member
    I've been taking N Acetylcysteine for various reasons, but I've read that many women with PCOS do see benefits from it. I can tell you that it has definitely regulated my period which was barely what one would consider regular when I was taking orthotri (the pill). It can be bought over the counter in the States as a vitamin supplement - not sure about other countries.

    I have similar symptoms to you - I find that if I'm not getting some exercise multiple times a week my weight tends to just keep increasing no matter what I eat.
  • pennyllayne
    pennyllayne Posts: 265
    If you're just trying to maintain then you should definitely increase fats. These don't need to be limited as long as you are not going overboard with them as with all foods. But with protein, the RDA is 0.8g per kg of bodyweight. I don't know how much you're eating, but I'm estimating that your RDA is around 50g. If you work out that can be increased slightly. But as I said, it's not an efficient source of fuel for the body and so too much isn't really warranted. Fats however, help a lot with hormonal balance and with absorption of vitamins and general health and as I said, is the body's preferred source of fuel hence why we have the ability to store so much of it! Whereas carbs in the form of glycogen can only be stored to provide enough energy for one day.

    And speaking of carbs, I wouldn't go too low. Very low intakes over long periods tend to increase cortisol production which will signal the body to store fat (especially around the belly). If you're fairly active up to 150g of carbs is fine. Less active people need less. Also, if you have been avoiding starches for a long time, if you incorporate them back in your body will need time to adjust again so don't be alarmed if you suddenly have stomach upsets or blood sugar issues. Just make sure you eat them with protein and fat to slow absorption.

    I do feel really bad for you though, as one of those people at a healthy weight but still have many PCOS symptoms. The only things doctors can suggest to help with symptoms aside from medication is to lose weight. If you don't need to lose weight then it really seems there's no way to improve your symptoms and to be perfectly honest, my symptoms aren't any better now than they were when I was 2 stone heavier. So the best way is to try balance out hormones with diet and exercise. If you have issues with high blood sugar then eating large amounts of starch may not be a good idea, so I'd start really small.

    I don't know if you eat organic or not, but I would highly recommend going organic with animal products at the very least as the non-organic ones are pumped full of hormones which you then assimilate when you eat them and would make sense that this would then upset your hormonal balance further.

    Oh, also, if you're not already you could try things that naturally lower testosterone which affects your period. Some examples are flaxseeds, inositol, Vitamin D, spearmint tea and again omega 3s which you're already on top of :). Good luck! I really hope it works out for you
  • salbags2
    salbags2 Posts: 11
    Hey Penny

    Thanks again - it's so good to talk about it.

    I work out 3/4 times a week for around 30 mins. So I now tend to average out (grams per day):

    100-150 carbs
    90-100 protein

    It's hard to tell fats on here, as not all mono/poly etc is correct in database foods, but

    Total fats: 25-50
    Sat fat: 10-15

    Organic might be a good idea...

    dxwatson - I will look into N Acetylcysteine
  • adorable_aly
    adorable_aly Posts: 398 Member
    Honestly regarding the 35 thing, that's just your GP, and I'm sure it's different depending on all sorts of circumstances, and I honestly think that's very irresponsible of them to say that to you, because it's not the GP that has the final say with fertility, it's the fertility specialist. I would pretend that I hadn't heard that and live life normally and cross that bridge if and when you come to it. You might have no problems conceiving, you just can't predict the future, so try not to worry about it.

    Regarding your macros, if you are lifting weight try and get a minimum of 0.8 grams of protein per lb of bodyweight. And for fat 0.35-0.45 grams of fat per lb of bodyweight. And the carbs get the rest. Though personally I try and get much more protein than that as I do a lot of strength training. So basically the standard recommendations lol. In terms of losing fat, you need to create a calorie deficit to get rid of it.

    Also exercise in general is great for PCOS, hormone stability and insulin resistance, especially HIIT, so that might be something to look into.

    You should try and find out if you are insulin resistant or not though, that could help you get some specific dietary recommendations. In your position, with the periods being absent etc, I would push your GP into sending you to a specialist.
  • julez4774
    julez4774 Posts: 80 Member
    hi i have pcos but im not lean i was told to go on low gi diet but didnt help couldnt shift it i manage now and again to shift abit i know will get there in end i just need to cut down on foods i like been doing home made soup diet every other day seemed to have helped abit
  • salbags2
    salbags2 Posts: 11
    Aly - thanks - I am not trying to loose weight, but maintaining with interval training/HIIT. I've been to see a gynaecological specialist who have told me to go away until I want to get pregnant so I went back to GP and asked to have a Hemoglobin A1c Test done (results on Thursday) to check my blood sugar levels over the past 5 days, which should be interesting re: IR, which I think I have and which is why I asked for Metformin 7 months ago.
    If no luck here I think I will ask to see an endocrinologist.
    Sal
  • shannaschueller
    shannaschueller Posts: 6 Member
    Lots of info from previous posters, just wanted to chime in. I used to have irregular periods too; once it was pretty long without one (not sure how long as I hadn't been tracking at the time) and another time (when I did keep track) it had been a year without. That was when I finally started visiting a gynecologist and she put me on birth control to get periods. Anyway a few years ago I stopped the pill (I want to have kids one day and am going to be 33 this year) and eventually started getting periods on my own each month. They aren't all the same number of day cycles, but I have been getting them each month. Not sure just what did the trick, but there is hope out there. Anyway, I also wanted to add that there is another PCOS website with message boards that might be helpful.

    www.soulcysters.net

    Also a diet that worked for me (I lost over 120 pounds until I got off of it) is called Ideal Protein. They have supplements and pre-packaged foods, but basically it was high protein and low calories, sugar, fat, and carbs. Not sure if you have that available, but it was what worked for me. Until I decided I was tired of it and got off of it. Either way, good luck!