I have PCOS would love some support

Hi,

I am new to PCOS and also to MFP but thought i'd give it a go. I am trying to lose weight because I was diagnosed with PCOS 2 weeks ago and been told I can't be put on medication until i've lost some weight.
I was wondering if there are any lovely ladies out there who have the same condition who can give me some moral support and maybe answer a few questions my doctors didnt answer? :)

Look forward to hearing back from you!

x
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Replies

  • Jodsmission
    Jodsmission Posts: 130 Member
    Okay ...here goes.
    A HUGE part of my weight gain came from the last two years of being sick. What used to be ovarian cysts every couple of months became ovarian cysts every month because I am getting older. It is horrible painful. Probably don't have to tell you. And as horrible as it sounds try to avoid the drugs they give you. All of those narcotics will make you gain weight. And to be honest they barely ever made a dent in the pain.So after 24,000 dollars in medical bills in 2 years and moments away from the hysterectomy I decided I quit. They really don't know how to help me and they will continue taking away my life in this process.
    So first I have two kids the whole PCOS have trouble getting pregnant did not apply to me.
    Second really take a look at vitamins and herbal supplements I find that DHEA daily decreases the pain and magnesium at night works just as well as all their pain killers.
    Avoid the Depo shot - what a nightmare - just google it and it didn't stop the cysts at all
    I swim . I find the water helps. I can't say my pain is gone but I am feel like I am more in control than I have been.
    My heart goes out to you good luck and I truly do feel your pain!!!!
  • mjohnson1966
    mjohnson1966 Posts: 3 Member
    Hi. My name is Michelle and I'm on myfitness pal along with being a member with beyond diet.com. that membership was 47.00 for lifetime. It has wonderful recipes. Lil confusing at times. I'm looking for friends also to share thoughts and to motivate in any way to stay positive or just listen. Ive been here for a while but came back because it helps me with obedience and with structure in my life. I may be able to help if I can if u have questions.
  • mjohnson1966
    mjohnson1966 Posts: 3 Member
    What is pcos?
  • katew221
    katew221 Posts: 82 Member
    Hello fellow Soul Cyster! Have sent you a FR :smile:

    PCOS is a tough illness, but there is loads of information out there. I was diagnosed with PCOS when I was 16 (now 22) so I am more than happy to answer any questions :flowerforyou:
  • katew221
    katew221 Posts: 82 Member
    Hi Michelle, PCOS is an illness or a syndrome whereby women grow a number of small cysts on their ovaries, which interfere with hormone production, and therefore can cause irregular and incredibly heavy and painful periods. The hormone imbalance can also affect mood, depression/anxiety and other aspects of daily life, and the most relevant for those on MFP is it causes ladies to put weight on very easily, and makes it very hard to lose. It is often confused with hyper-thyroidism and diabetes, as the insulin issues causing sugar-retention in the blood (and therefore food cravings and weight gain and slow weight loss) are similar. Some supplements and medicines that combat sugar-retention such as Garcinia Cambogia or Metformin can be effective. It has also been linked to gastro disorders such as IBS.

    Although the cysts themselves do not cause infertility, the irregular ovulation can make it hard for ladies who suffer with PCOS to conceive, and the weight gain caused by the syndrome often leads to more obesity-related pregnancy complications, such as miscarriages.

    It is a very common syndrome. Once you do have the diagnosis the best thing you can do is to lose weight, as this can alleviate or at least control almost all symptoms associated with PCOS :smile:
  • megannnn15
    megannnn15 Posts: 36 Member
    I have PCOS also! I have sent a friend request your way! We are in this together.

    -Megan
  • beckii_c
    beckii_c Posts: 3
    Hi!

    Thank you very much for your reply and FR, i wasnt sure if anybody would message back!
    Oh wow really? I only got diagnosed 2 weeks ago (i'm 19) and haven't really got much information about it and no support from somebody who also has the condition. Don't get me wrong my boyfriend has been great but he knows and understands even less than i do!
    I'm looking forward to finding out lots of tips and tricks of fellow PCOS suffers :) and hopefully gain some good supportive friends along the way! :)
  • beckii_c
    beckii_c Posts: 3
    Hi Megan!

    I have accepted your FR!

    You guys are great! I honestly didn't think anybody would reply!
    It feels great to know there are others out there!

    x
  • BeccaJane_x_
    BeccaJane_x_ Posts: 34 Member
    Fellow PCOS-er here... feel free to add me ladies!
  • BeccaJane_x_
    BeccaJane_x_ Posts: 34 Member
    Hi Kate.. thanks for this info it is very helpful, as like the OP, I have only been recently diagnosed myself. Just wondering if the insulin issues are for ALL PCOS sufferers, or only in those overweight? I am not classed as overweight, would I still have the insulin related problems?

    Thanks in advance... :-) x
  • katew221
    katew221 Posts: 82 Member
    Hi ladies! Yay, lots of lovely new PCOS Soul Cyster friends today :smile:

    BeccaJane, I'm not sure whether the insulin issues would be as acute in someone who is a healthy weight, but I would imagine the blood sugar issues would still be present, although maybe reduced because the hormone imbalance has been helped the the weight loss. Maybe ask your doctor if you are struggling? They may be able to help more than me, I just know the things I have researched for myself, as I said to becki I have become an bit of an unwilling expert :laugh:
  • katew221
    katew221 Posts: 82 Member
    Also ladies, do check out the PCOS awareness groups that are around, they are great :smile:

    PCOS.jpg
  • ahansen04
    ahansen04 Posts: 1
    Hi ladies I have pcos too. I just went back to the doc and they had to up my metformin to help with my periods and my weight gain. I would love some support to. It has been hard going for me to lose this weight so days it hurts looking in the mirror.
  • Amy1527
    Amy1527 Posts: 18
    Hi ladies, I also have PCOS, I was diagnosed when I was 15 and I am now about to turn 27. For the past 4.5 years my partner and I have being TTC with no luck and surprise surprise the NHS will not give us the fertility treatment we need until I lose weight but as you all know, losing weight with PCOS is not easy and that is why I joined this site but I didn't know about these groups until recently and I am really excited to meet people in the same boat as me. Hopefully we can all support each other. I don't know about anyone else but I find that I don't really have anyone in my life who understands how hard it is to have a problem with weight and fertility and I really hope to find that support here like many of you! Please feel free to add me or message me if anyone wants to talk or ask me any questions about PCOS, I would be more than happy to help. I want to wish all you strong beautiful ladies luck in your journey!!
  • userdloat1
    userdloat1 Posts: 2 Member
    Hi guys,

    Just wondering what people's experiences with PCOS have been? I've got a doctors appointment in a couple weeks as I fear I may have it myself, but my symptoms don't match up perfectly, so just wondering if anyone diagnosed with PCOS has had similar symptoms to me.

    So here's my story...

    I went on the combined pill when I was 13 due to having ridiculously heavy periods, they were regular but I just couldn't cope with them back then. I was on it until about July last year, and since then I've gained 31 pounds! I'm not super active these days, but I am probably doing more exercise now than when I was on the pill, and I eat a lot healthier now I'm not a student anymore. Before I was eating pizza and cake all the time along with at least 20 units of alcohol a week!

    My weight gain was slow at first but has really accelerated since about December, I then also decided to stop smoking in January which probably hasn't helped my weight problem either.

    But the last 4 months I've been having irregular periods getting closer together each month and I've been plagued with acne, worse than it ever was when I was a teen. I've not gone a day in 4 months without getting a new spot and plenty have been horrible under the skin bumps that have persisted for weeks.

    I've also noticed my moustache hair has gotten darker and is growing more quickly. Losing weight has also been impossible, the low carb diet was the only one with any success but with the horrible brain fog I got with it, I just couldn't carry on, and as soon as I started eating carbs again (mainly just sweet potatoes, potatoes and rice) I gained it all back and more! In the past when I was a bit overweight while taking the pill, I was literally stuffing my face with bad food every day and as soon as I started eating healthy and getting a bit of exercise everyday, the weight just melted off me and that was when I was 18. My metabolism can't have slowed down that much since then, I'm only 21 now.

    I've heard that with PCOS most people just don't have periods at all rather than super heavy ones that are a bit irregular like mine and that their weight gain tends to be just in the stomach region, whereas mine has been all over but particularly noticeable around hips and arms and I guess my stomach a little as well (although in the past I never put on weight there at all). I've also not really had any ovarian pain, just wondering if anyone else diagnosed with PCOS has had similar symptoms to these? Don't want the doc to think I'm a hypochondriac or anything.

    I've been on the contraceptive pill for so long it's hard to know whether this is natural for my body or whether I do actually have PCOS. At least if I do have it, I will be able to go back on the pill and lose this horrible weight, so tired of trying on clothes I bought only last summer and finding they are way too small for me. Good luck with losing the weight everyone! Let's hope there is a light at the end of the tunnel after all!
  • Amy1527
    Amy1527 Posts: 18
    Hi userdloat1,

    I've read your post and it is true you do have a lot of the symptoms of PCOS but a simple blood test at the doctors will be able to tell you if you have it. I also suffer with the hair, weight gain etc but I do not have periods. I have known I have had PCOS since I was 15 and I have researched quite a bit. It is possible to only suffer a few of the symptoms but still have periods. I think what I am trying I say is try not to worry until you know. If it is causing you problems you can always go back on the pill, that will help with the hair and the weight gain and the regularity of your period but if you are planning on having a family obviously that isn't an option. I am told that you have to allow up to 2 years for your body to adjust to coming off the pill, especially if you have been on it a long time.

    Like I said, a simple blood test will help confirm if you have it or not and your doctor can always follow it up with an ultrasound of your ovaries to be sure. Try not to worry and please feel free to message me if you have any questions.
  • UsedToBeHusky
    UsedToBeHusky Posts: 15,228 Member
    I was diagnosed in February. I've been on Metformin but losing is still slow.

    You can add me if you like, but I forewarn anyone who adds me that my filters are generally off on MFP.
  • userdloat1
    userdloat1 Posts: 2 Member
    Thanks for your post! I guess I will just have to wait and see and hopefully I won't gain any more weight in the meantime :) Luckily I'm not planning on having a family for a little while yet so the pill is definitely an option, wish I'd never stopped taking it in the first place.
  • Amy1527
    Amy1527 Posts: 18
    Let us know how you get on :-)
  • tryett
    tryett Posts: 530 Member
    I have lived with PCOS and no meds for my entire life. I am currently 55, was diagnosed in my 20s. I have all the classic symptoms including difficulty conceiving. I was on clomid (maximum dosage) for several months before I had my first miscarriage (that was after a year of taking my temperature everyday). The following month I got pregnant again (he is now 21) and then again without any fertility drugs 16 months later (he is now 20). Apparently it is fairly common that once you conceive using fertility drugs it has some residual affect (at least the clomind does). The really cool thing was that although I have had a weight problem my entire life, my metabolism functioned normally during pregancy. I weighed 4 pounds less before I delivered my oldest (lost 20 pounds at delivery and he was a little over 7 pounds) and only 10 pounds heavier before I delivered my second son (again losing it all plus at delivery). This was while eating 2800 calories a day on a diabetic diet (I had gestational diabetes). I was the only one in lamaze class who could get up off the floor by myself. The one things no one mentioned to me was that clomid increases your risk of ovarian cancer (my OB/GYN also told me PCOS does also). Considering my grandmother had ovarian cancer and my mother died from it at 54, I chose to have a complete hysterectomy at 38. I was having some pain (apparently it wasn't that I was getting old like I thought but due to the golfball sized cyst that had developed) so it was a wonderful choice for me. I have had limited sucess at weight loss but this time my Dr has sent me to a nutritionist and I am more committed then ever.
  • Amy1527
    Amy1527 Posts: 18
    Tryett your story is inspirational. Very brave decision to have a hysterectomy I think but your reasons speak for themself! My doctor won't give me Chlomid until I reach a BMI of less than 30 which I feel like is the only thing standing in my way now! So here I am on my weight loss journey with you wonderful people!!
  • cebreisch
    cebreisch Posts: 1,340 Member
    I've got PCOS and was diagnosed about 11 years ago. I'm almost 48.

    Things that I've found that have helped me include:

    When I have a snack, have something protein first. That'll help keep the cravings in check.
    Drink water.
    Make sure you have quality protein, and lots of it. It's okay to go over on your protein, and if you focus on it, the carbs/fats will take care of themselves.
    Make sure you get enough fiber. I usually have chocolite protein bars (www.healthsmartfoods.com and you can get coupon codes at www.retailmenot.com). They have about 10g protein, and about 10g fiber - about 100 calories, gluten/sugar free.

    They should be able to put you on glucophage or metformin.

    I've had 2 fertility cycles and have 2 beautiful girls. If you have any questions about that process, feel free to send me a message.
  • tryett
    tryett Posts: 530 Member
    I was fortunate to find a Dr who would prescribe clomid to someone overweight back then. But it was expensive and our insurance did not cover it. But the boys were worth it.
  • Hi Hun, I was diagnosed with PCOS on yesterday at age 30! Im on board with you! I sent a request to you
  • ilovefatthatswhyimfat
    ilovefatthatswhyimfat Posts: 10 Member
    PCOS suffer here too! Feel free to add me ladies. I've been diagnosed for 7 years. I find that we have to eat way less than non pcos sufferes to lose weight which feels unfair!
  • Amy1527
    Amy1527 Posts: 18
    I'm thinking about going private. The NHS here is a joke sometimes but I do understand it can be dangerous and the success rate is higher with BMI under 30. It's very frustrating when I go for my check up at the gynae right next door to labour ward and pass all the pregnant women outside smoking or who are so overweight you don't know where baby bump starts, that's really cheeses me off! Sorry off on a rant lol x x
  • LKArgh
    LKArgh Posts: 5,178 Member
    Was diagnosed when I was 18, this is more than 20 years ago. I was lucky in that my dr was also specialising in reproductive endocrinology and insisted that as long as I exercise and monitor my weight I would be fine. I had some cysts at times, never requiring surgery, I had some trouble conceiving one of my kids but nothing terrible, have insulin resistance but it is more of a lab finding so far , not affecting my life. I have tried to not be completely sedentary (with periods of being very active) and have never been overweight so far. Honestly the only noticeable effect of PCOS is increased body hair and some facial hair, but is more a nuisance than a real health issue. My BMI has been all these years in the range of 18 to 21-22, and according to my dr this is important in not having symptoms. I am no expert, but so far he seems to be right.
  • Aimee2001
    Aimee2001 Posts: 1 Member
    I was just diagnoses with PCOS yesterday at age 31 and got back on my fitness pay for the first time in years today. All of a sudden my massive weight gain (25 lbs in less than a year) and my insulin issues make so much more sense. It's nice to see so many other people with same issues supporting each other.
  • kmash32
    kmash32 Posts: 275 Member
    Hello,

    I have PCOS and was just diagnosed about a year and a half ago, I am 41 now. I also have no thyroid and a heart condition that means no high intensity exercise.

    I have to say what has worked for me in the past and I need to get back to is that I stick to a net calorie intake of around 1200-1300 calories a day. Exercise is also a key for me. I do find I can eat carbs but it has to be gluten-free (except corn based products) or certain others like kamut (ancient grain). I fine that potato's (though I have had a hard time with giving up fries) and white rice are no good either.

    I have regular periods although they are every 5 instead of 4 weeks. Between the no thyroid and the PCOS I definitely have the facial hair and the leg hair is darker and courser too. Other than that and the fact that I put on all my weight around my stomach I don't have that many symptoms. Something to watch out for and get tested is your thyroid. I have read a lot about the fact that PCOS and hypothyroidism can me connected.

    Feel free to add me.
  • kmash32
    kmash32 Posts: 275 Member
    Oh there is also several groups on here for PCOS sufferers. Just click on groups and do a search.