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Thread: Anyone else have PCOS?

  1. #1
    Afton's Avatar
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    Hi,

    I've had PCOS for almost a year now and I'm still having a hard time adjusting to some of the symptoms. I'm having some extreme fatigue, headaches, backaches, not having my cycle for up to 4 months, or having one for up to 30 days at a time. I also have severe acne again at 27 years old, and excess hair growth.

    Anyone have any advice on treatment or coping?

    Thanks.

  2. #2
    Super Member Dolphyngyrl's Avatar
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    what is PCOS

  3. #3
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    Polycystic Ovary Syndrome.

  4. #4
    Super Member JulieR's Avatar
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    I'm so sorry you're going through this. Have you considered going on the pill?

    I don't have PCOS, but I have a lot of friends (online and IRL) who do, and a few of us went through fertility treatments together. They are all parents now. :)

  5. #5
    Afton's Avatar
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    I'm already on hormones and other medications and I have absolutely negative interest in conceiving. I'm just not able to control my symptoms even with the meds. I didn't expect them to work but i even tried the diets that say they help managing symptoms.

  6. #6
    Super Member jayelee's Avatar
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    I have this Never did have a child Ended up having cycles that lasted two months finally five years ago they did an endometrial ablation and I have not had a problem since

  7. #7
    Super Member JulieR's Avatar
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    Are you seeing a GP, a gyn or a reproductive endocrinologist? If not an RE I'd make an appointment with one to get another opinion on your treatment. Most gyns and GPs don't know much about conditions like PCOS and premature ovarian failure - strange but true.

    Even if you have an RE already maybe it's worth a second opinion anyway?

  8. #8
    Senior Member angiecub's Avatar
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    Quote Originally Posted by JulieR
    Are you seeing a GP, a gyn or a reproductive endocrinologist? If not an RE I'd make an appointment with one to get another opinion on your treatment. Most gyns and GPs don't know much about conditions like PCOS and premature ovarian failure - strange but true.

    Even if you have an RE already maybe it's worth a second opinion anyway?


    I agree you will want to see an endocronologist. I was diagnosed with this about 25 years ago. Your symptoms are typical. I would say the pill will do the best at staving off those symptoms. Also, the heavier we get, the worse the symptoms are.

  9. #9
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    I have had PCOS for many, many years. My suggestion is to go to http://www.soulcysters.com It is a great community and you will find tons of suggestions and help and support. I am a member there as well.

    Definitely go to a Reproductive Endocronologist. Even if you are not interested in conceiving. They are the ones that have the most up to date information on this and are sometimes (depending on the doctor's personality) more willing to think outside of the box for solutions.

    At this point in my life I just try to manage my symptoms because there is a chance that I might want to have another child. That limits the solutions that are available for me. But for you if you don't want to conceive there are quite a few things that you can try. Check out Soulcysters you will find it very helpful.

    Good luck and hang in there!

  10. #10
    Senior Member qbquilts's Avatar
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    I have it. I'm actually going in tomorrow for my 6 month check-up. I was diagnosed several years ago. Are you being treated (or have you been checked) for insulin resistance? When I was first diagnosed (late 90's), the standard treatment was to treat the irregular periods and/or infertility. Since I didn't care to be on birth control and was not trying to get pregnant, I opted out of any treatment.

    In the mid-2000's, I was sent to an endocrinologist for thyroid issues. He discussed the PCOS with me and tested me for insulin resistance. During the time between my diagnosis and that appointment, treatment standards changed from treating the "female symptoms" of PCOS and instead focused on the insulin resistance that is the cause of the imbalanced hormones that cause the "female symptoms" and other symptoms.

    He put me on Metformin, but I am really bad about taking medicine every day (very strong gag reflex), so I don't always get the best relief/treatment that I should.

    If you're not trying to get pregnant, then an endocrinologist instead of a RE should be fine. The place I go to is one of the top local diabetes places, which is great since the insulin resistance is the basis of Type II diabetes.

  11. #11
    Senior Member lheartsl's Avatar
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    yup... stinks doesn't it...

  12. #12
    Super Member Country1's Avatar
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    Quote Originally Posted by Afton
    Hi,

    I've had PCOS for almost a year now and I'm still having a hard time adjusting to some of the symptoms. I'm having some extreme fatigue, headaches, backaches, not having my cycle for up to 4 months, or having one for up to 30 days at a time. I also have severe acne again at 27 years old, and excess hair growth.

    Anyone have any advice on treatment or coping?

    Thanks.

    My daughter has it and has had to have scar tissue removed several times. She is only 23. Don't laugh, but her gyno suggested acupuncture, she's only been a couple of times, but she said it has made her feel better. They told her she will probably have to have hysterectomy in the next couple of years.
    I feel for you, hers started when she was 14, by the grace of God she has a 4 yr old daughter. I've watched her go thru so much. My husband and I are both nurses and have felt so helpless watching her and knowing everything she tried didn't work or at least not for long.

  13. #13
    Afton's Avatar
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    Quote Originally Posted by qbquilts
    I have it. I'm actually going in tomorrow for my 6 month check-up. I was diagnosed several years ago. Are you being treated (or have you been checked) for insulin resistance? When I was first diagnosed (late 90's), the standard treatment was to treat the irregular periods and/or infertility. Since I didn't care to be on birth control and was not trying to get pregnant, I opted out of any treatment.

    In the mid-2000's, I was sent to an endocrinologist for thyroid issues. He discussed the PCOS with me and tested me for insulin resistance. During the time between my diagnosis and that appointment, treatment standards changed from treating the "female symptoms" of PCOS and instead focused on the insulin resistance that is the cause of the imbalanced hormones that cause the "female symptoms" and other symptoms.

    He put me on Metformin, but I am really bad about taking medicine every day (very strong gag reflex), so I don't always get the best relief/treatment that I should.

    If you're not trying to get pregnant, then an endocrinologist instead of a RE should be fine. The place I go to is one of the top local diabetes places, which is great since the insulin resistance is the basis of Type II diabetes.
    I am of the metformin and I see only marginal resuts from that. I would like to me on the birth control but for some reason the gyno I saw wouldn't give it to me for more than. 10 days a month which means I'm miserable 20 days a month. I don't have visible cysts right now so they won't do anything surgical to mitigate the symptoms.

    I wouldn't be so whiney about it all if it wasn't seriously affect my job and person relationships.

  14. #14
    Super Member wanda lou's Avatar
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    i feel so bad for you.

  15. #15
    AbbyQuilts's Avatar
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    I have had it since I was 14. I have maybe 2 cycles a year. I have never been able to conceive in the 10 years I have been married and we want so badly to be parents. We have tried fertility treatments and they didnt work.
    This year I have been getting horrible symptoms. Last year was a good year for me.
    Last year my acne was doing okay and I was having semi regular cycles.
    This year my face is horrid and I have had 1 cycle and it was horrible. The worst pain I have ever been in.

    I am to the point of if I cant get pregnant then why must I have to bear the pain of intense cycles.

    Sorry for ranting but the last few months have been really bad for me emotionally

  16. #16
    Senior Member qbquilts's Avatar
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    Quote Originally Posted by Afton
    Quote Originally Posted by qbquilts
    I have it. I'm actually going in tomorrow for my 6 month check-up. I was diagnosed several years ago. Are you being treated (or have you been checked) for insulin resistance? When I was first diagnosed (late 90's), the standard treatment was to treat the irregular periods and/or infertility. Since I didn't care to be on birth control and was not trying to get pregnant, I opted out of any treatment.

    In the mid-2000's, I was sent to an endocrinologist for thyroid issues. He discussed the PCOS with me and tested me for insulin resistance. During the time between my diagnosis and that appointment, treatment standards changed from treating the "female symptoms" of PCOS and instead focused on the insulin resistance that is the cause of the imbalanced hormones that cause the "female symptoms" and other symptoms.

    He put me on Metformin, but I am really bad about taking medicine every day (very strong gag reflex), so I don't always get the best relief/treatment that I should.

    If you're not trying to get pregnant, then an endocrinologist instead of a RE should be fine. The place I go to is one of the top local diabetes places, which is great since the insulin resistance is the basis of Type II diabetes.
    I am of the metformin and I see only marginal resuts from that. I would like to me on the birth control but for some reason the gyno I saw wouldn't give it to me for more than. 10 days a month which means I'm miserable 20 days a month. I don't have visible cysts right now so they won't do anything surgical to mitigate the symptoms.

    I wouldn't be so whiney about it all if it wasn't seriously affect my job and person relationships.
    Have you tried any type of diet and/or exercise changes? I felt my best earlier this year when I was working out 3 - 5 times a week (walking and basic strength training). I got super busy with other stuff in April and haven't gotten back in the routine and can tell you that working out really did make a difference in how I feel. Also, since the insulin resistance is a factor, and how we eat affects our insulin,try making changes to your diet. Don't totally forsake carbs, but make sure you're choosing the whole grain variety and try to avoid as much processed/sugary junk as possible.

  17. #17
    Afton's Avatar
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    i get you, i really do. its so painful, cramps, bursting cysts, and the tension and pain have given me gastroenteritis-- twice. and the moodswings and fatigue are making it hard to work.

    And inevitably it seems to be a "good day" when I have a drs appt, so they seem to think I'm exaggerating.

  18. #18
    Afton's Avatar
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    Quote Originally Posted by qbquilts
    Quote Originally Posted by Afton
    Quote Originally Posted by qbquilts
    I have it. I'm actually going in tomorrow for my 6 month check-up. I was diagnosed several years ago. Are you being treated (or have you been checked) for insulin resistance? When I was first diagnosed (late 90's), the standard treatment was to treat the irregular periods and/or infertility. Since I didn't care to be on birth control and was not trying to get pregnant, I opted out of any treatment.

    In the mid-2000's, I was sent to an endocrinologist for thyroid issues. He discussed the PCOS with me and tested me for insulin resistance. During the time between my diagnosis and that appointment, treatment standards changed from treating the "female symptoms" of PCOS and instead focused on the insulin resistance that is the cause of the imbalanced hormones that cause the "female symptoms" and other symptoms.

    He put me on Metformin, but I am really bad about taking medicine every day (very strong gag reflex), so I don't always get the best relief/treatment that I should.

    If you're not trying to get pregnant, then an endocrinologist instead of a RE should be fine. The place I go to is one of the top local diabetes places, which is great since the insulin resistance is the basis of Type II diabetes.
    I am of the metformin and I see only marginal resuts from that. I would like to me on the birth control but for some reason the gyno I saw wouldn't give it to me for more than. 10 days a month which means I'm miserable 20 days a month. I don't have visible cysts right now so they won't do anything surgical to mitigate the symptoms.

    I wouldn't be so whiney about it all if it wasn't seriously affect my job and person relationships.
    Have you tried any type of diet and/or exercise changes? I felt my best earlier this year when I was working out 3 - 5 times a week (walking and basic strength training). I got super busy with other stuff in April and haven't gotten back in the routine and can tell you that working out really did make a difference in how I feel. Also, since the insulin resistance is a factor, and how we eat affects our insulin,try making changes to your diet. Don't totally forsake carbs, but make sure you're choosing the whole grain variety and try to avoid as much processed/sugary junk as possible.
    Changing my diet, which isnt particularly poor, did nothing. And due to a prior injury most exersize is out. but i did do some of the stuff i can do and that didnt help much either.

    another symptom is that i have gained FIFTY pounds in the last 3 years... without eating for or doing less.

  19. #19
    Super Member Ripped on Scotch's Avatar
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    My doctor said he thinks I have PCOS because I have some of the symptoms. I'm not so convinced though. All the tests he said came back normal. I have been reading up on it a lot and if thats really what it was I would have had it my entire life. I didn't have any of the typical signs before June 2010. I had a bad MC around that time and ever since its been interesting to say the least. I did his way for 8 months and no changes so now I'm being reffered to a specialist now so we can see what is really going on. A friend of mine went through the same thing that I did and she was treated completely different by a different doctor.

  20. #20
    Super Member Ripped on Scotch's Avatar
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    Quote Originally Posted by Afton
    another symptom is that i have gained FIFTY pounds in the last 3 years... without eating for or doing less.
    I gained 10lbs in 3 months, but my doctor said that for 2 of those months my body still thought I was pregnant.

  21. #21
    Senior Member qbquilts's Avatar
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    UPDATE: He's referring me to the dietician in the office for "medical nutritional counseling". If insurance will pay for it, I'm definitely going to meet with her. If insurance doesn't pay for it, it will depend on the cost.

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