Can I 'sort of' have PCOS?

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Hi everyone,
I'm not new to MFP but I am new to these forums. I wouldn't normally use them but I think now, I need some advice. But before I start, I think I need to briefly introduce myself...
My name is Steph and I'm 22 years old. I have always been big. I am built big. Being petite will never be what I'll be but I have no worries about that. I embraced being big, loved my curves and was content with what I saw in the mirror. March last year, I went to Japan for an exchange programme and my cycle became really messed up. I also started losing my hair, not drastically but every time I ran my fingers through it, it would come out. After many tests and scans, it was revealed that I have a total of 9 cysts across my ovaries. One of which was 2.8cm in diameter, but my GP said that they don't act upon them unless they are 3cm or larger... She later told me that because I don't have ALL the symptoms of PCOS, they can't say that 'yes, you have PCOS'. I was told this earlier in the year. Over the past month or so, with no change in my diet or lifestyle, I have gained 25lbs.
For the first time in my life, i'm scared of being the weight I am. I don't know what to do. My whole family are slight or of average weight. I'm the only one with weight problems so feel they don't understand me as much as they think. Reading these forums over the past few days have given me the courage to contribute and put my concerns out there to hopefully receive some support or advice on what I should do next. Is it possible for someone like me to 'sort of' have PCOS? What should I do? I feel things are getting worse. I need help :(

Replies

  • SLLRunner
    SLLRunner Posts: 12,943 Member
    edited October 2014
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    Steph, the only advice I can give you is to see another doctor.
  • N2Couture
    N2Couture Posts: 2,762 Member
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    Pcos and/or endometreosis yes. Were you checked for thyroid too?
  • Liftng4Lis
    Liftng4Lis Posts: 15,150 Member
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    SLLRunner wrote: »
    Steph, the only advice I can give you is to see another doctor.
    +1
  • 3Alice3
    3Alice3 Posts: 36 Member
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    Hi Steph :) I don't have any useful advice for you but wanted you to know I am sort of in the same boat ... I am 23 and have multiple cysts on my ovaries, haven't had a period in over a year, and my doc has said I have 'some symptoms' of pcos but I haven't been diagnosed with it. Thyroid has been tested and everything. I would ask your doctor to run more tests. I haven't put on any more (significant) weight with my cysts but I am really struggling to get it off and I am sure it is to blame. Good luck!
  • viciouslitany
    viciouslitany Posts: 187 Member
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    time to buckle down! I know how you feel.

    tons of women here have or had PCOS - you can utterly destroy your symptoms with weight loss and a healthy lifestyle. you're really going to want to watch your added and simple sugars, because PCOS often goes hand in hand with insulin resistance.

    eat good, eat green, move more. PCOS makes it harder to lose weight, but it doesn't make it impossible.
  • 2fat2jump
    2fat2jump Posts: 5 Member
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    You don't have to have all the symptoms of PCOS to be diagnosed with PCOS. There are an umbrella of symptoms that leads a dr. to diagnosing someone. I went undiagnosed for years even though I suspected I had it. I finally found a dr. that would listen to me and I'm being treated. In my opinion it sounds like you have it. The good news is PCOS is manageable through diet and exercise.

    As far as weight, it is very possible to lose weight with PCOS. I lost 130lbs+ through a low carb diet and exercise alone. The absolute best advice I can give you is to go gluten free. That has been life changing for my PCOS symptoms.

    I would definitely find another dr and get a 2nd opinion. Good luck to you!
  • LeMooMoo
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    Thank you everyone! I think my Thyroides were tested when all my tests were started last year. They pretty much did a full body thing because I hadn't been to the doctors in years. I don't eat junk food and love my veggies. I also have many friends who need to eat gluten-free food because they suffer celiac disease, so i'll ask them for some recipes, etc :) My GP has since left so i'll phone them tomorrow to arrange something with a new one. I really appreciate this guys :) x
  • SLLRunner
    SLLRunner Posts: 12,943 Member
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    Hang in there, kiddo. Second opinions are always good. :)
  • laurasnom
    laurasnom Posts: 3 Member
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    I've got both Endometriosis and PCOS and both are 'officially' diagnosed - I've had 2 surgeries for my Endo. I don't have all the symptoms of either but it did take ages for the diagnosis to happen. I think (it was a while ago) that the main things that led to the diagnosis of PCOS were the cysts on my ovaries - they look like chocolate chip cookies on the ultrasound - and really high levels of testosterone and my inability to lose weight...then the usual squiffy periods etc. I never had any over hair growth or dark skin patches etc. I've now gone from 220lbs to 160lbs through a low-carb diet and moderate exercise :smile:
  • LeMooMoo
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    Thanks laurasnom! Your starting weight is actually where i'm currently at. How long did it take you to get down to the weight you are now? I'm going to begin reducing the amount of carbohydrates that are in my diet although there isn't a lot present at the moment. How do you manage it say when you eat out, or at a friend's house?
  • helenarriaza
    helenarriaza Posts: 519 Member
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    I'm on the same boat! :'(

    At 21 I had a 3 months period, severe dehydration, lost hair by the bunch, anemia and I pretty much blacked out from pain, the next month nothing and then again. My OB/GYN denied flatly that I could have cysts since I was "too young" (by that he means, unmarried w/o kids). He gave me birth control pills which gave me severe acne, water retention and weight gain.

    I decided to start losing weight at 285 (back in may) and weight was coming off pretty well and at a good pace but it seemed to get stuck at 255.

    In august 31st I had a surgery since I had an awful pain on my lower left side, one doctor said torn pelvic muscle but I could move; so I went to the OB/GYN and he said AGAIN I was too young to have problems (at 24) and sent me for an ultrasound since he thought I had kidney stones.

    While at the ultrasound the doctors freaked out since a 2 1/2 inches cyst had ruptured, along with my ovary. The insurance company took forever to approve it (pain began since aug 18) and now I have a slash (which is a bit longer than a C section) that left the area completely numb, incredibly painful periods that last 5-6 days (they were 3-4 before) that leave me drained.

    My ovary was partially reconstructed (I was told, did not go further) adhesions removed and was told there were many other cysts were but were minor as well as being told I had endometriosis and I had to do mayor changes.

    Two days later he said I was completely fine and to go on as if nothing had happened.

    Since yesterday I've been with a lot of pain and I have days where I eat everything on site and days where I'm nauseated all day, my weight is stuck.
  • Kate7294
    Kate7294 Posts: 783 Member
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    I know I was always irregular unless on contraceptives ( when younger ). Like 2 or 3 cycles a year irregular. I wasn't diagnosed till 2009 after 2 yrs. without a cycle altogether. Yes my hair thins, and I started getting facial hair as early as my 20's. I also had keytones in my urine in 2009. How is your sugar? I was diagnosed by a regular Doctor's office not a gynecologist myself.
    Not everyone is prescribed medications for PCOS. A lot of members here are controlling theirs without. You can always research PCOS here and they also have forums I believe off of WebMD's site.
  • chocbeast
    chocbeast Posts: 44 Member
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    I didn't start to get symptoms till my mid 20's and this is when the facial hair and weight gain began. I'm now 35 and had my official diagnosis last week as I'd had enough. The adult acne started a few years ago and my weight gain got out of control as did the excess hair growth and fits of sleep disturbance and anxiety.

    Dr diagnosed me on symptoms and raised testosterone levels. I have been prescribed Dianette for the acne and facial hair and I have started a low GI/low sugar diet to combat the insulin resistance and regain control of my body.

    There is loads of us our there with PCOS and various things to try and help. Good luck x
  • darrellhenderson
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    I have both PCOS and endometriosis that have been diagnosed for years. I can tell you that hardly anyone has EVERY symptom. I would suggest that you see an endocrinologist if at all possible. That's what I had to do. I can also say that the main treatments for PCOS are diet and exercise. I can't tell you how much better I am doing since I started doing better with my eating and got my extra weight off. Good luck to you...I hope you can get some answers soon.
  • timberowl
    timberowl Posts: 331 Member
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    So sorry to hear you're going through this. It's possible to have "symptoms caused by cysts" which don't necessarily meet the criteria for PCOS.

    Last October I went through something similar. My period was nearly a month overdue, my hair started falling out like crazy, and I was swelling up and gaining weight. I was always cramping, my boobs hurt all the time, and I was super emotional. My boyfriend and I were completely convinced that I was pregnant.

    I asked the doctor for advice and was told that cysts are actually normal. At any given time MOST women have some cysts. Sometimes they cause symptoms and it's "unfortunate" but they're not considered life-threatening unless they meet the size criteria you mentioned.

    I ended up gaining 20 lbs over the next 3 months before my symptoms finally went away. I still haven't lost any of it, and my hair is still falling out, but at least my cycles seem fairly regular.
  • Gentyl
    Gentyl Posts: 184 Member
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    LeMooMoo wrote: »
    Hi everyone,
    I'm not new to MFP but I am new to these forums. I wouldn't normally use them but I think now, I need some advice. But before I start, I think I need to briefly introduce myself...
    My name is Steph and I'm 22 years old. I have always been big. I am built big. Being petite will never be what I'll be but I have no worries about that. I embraced being big, loved my curves and was content with what I saw in the mirror. March last year, I went to Japan for an exchange programme and my cycle became really messed up. I also started losing my hair, not drastically but every time I ran my fingers through it, it would come out. After many tests and scans, it was revealed that I have a total of 9 cysts across my ovaries. One of which was 2.8cm in diameter, but my GP said that they don't act upon them unless they are 3cm or larger... She later told me that because I don't have ALL the symptoms of PCOS, they can't say that 'yes, you have PCOS'. I was told this earlier in the year. Over the past month or so, with no change in my diet or lifestyle, I have gained 25lbs.
    For the first time in my life, i'm scared of being the weight I am. I don't know what to do. My whole family are slight or of average weight. I'm the only one with weight problems so feel they don't understand me as much as they think. Reading these forums over the past few days have given me the courage to contribute and put my concerns out there to hopefully receive some support or advice on what I should do next. Is it possible for someone like me to 'sort of' have PCOS? What should I do? I feel things are getting worse. I need help :(


    Sadly, it sounds to me like you have had a carbohydrate intolerance all of your life and that will make things worse as you grow older. In order to avoid and reverse the complications, I recommend the ketogenic diet. If you do it now, you may be surprised at how quickly the weight just falls off. You may feel weak the first couple of weaks, perhaps flu like symptoms, as your body detoxifies from the carbohydrates. I recommend phase 1 of the atkins diet with very moderate protein. Unfortunately, your family may not be able to understand for a while. But, when they see that the weight just falls off, they will get it. Finding myself in a similar boat a couple of years ago, I went on the ketogenic diet and lost all or my weight within the first 7 months. Take heart! There is an answer.
  • timberowl
    timberowl Posts: 331 Member
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    BTW I went through all the same tests you did: thyroid, etc. I gained 12 lbs in the first 3 weeks. I had JUST lost 30 lbs through MFP over the past year and I was DEVASTATED. No one understood. Literally no matter what I did, how much I worked out through the pain, or logged every calorie I ate, the pounds kept coming on. And they're 10 times harder to lose that before the symptoms came. The only option seems to be waiting out the symptoms and hitting the gym harder than ever when they die down.
  • MarziPanda95
    MarziPanda95 Posts: 1,326 Member
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    I was also told that I 'sort-of' have PCOS, I had the symptoms of weight gain, no period, skin tags, mood problems, some abdominal pain (not sure about hair loss as I have alopecia anyway). They did a blood test and an ultrasound. The blood test showed the hormone levels consistent with PCOS, but then they couldn't find any cysts on my ovaries on the ultrasound. I'm not sure if they just missed them somehow or if I'm just weird :\