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  1. #1
    Join Date
    Mar. 19, 2003
    Location
    Palestine, TX
    Posts
    2,565

    Default PCOS?

    Anybody have it? I've had a strange accumulation of seemingly-unrelated symtoms over the last few years and have seen a variety of different specialists (high-risk OB, endocrinologist, GI, etc) who each looked at isolated test results with little progress... but lately I've been suspecting that it's all tied together and I most likely have PCOS. I'm seeing a new OB next week and hoping he can look at it with fresh eyes and point me in the right direction to find out for sure (to an RE, I guess). Anyway... who all here has dealt with PCOS?
    *#~*#~*#~*#~*
    Proud Momma of *Capital Kiss* and Bottle Rocket!



  2. #2
    Join Date
    Jan. 14, 2003
    Location
    Massachusetts
    Posts
    5,730

    Default

    I have it. Good luck with a diagnosis because Dr's do not seem to care unless you are trying to get pregnant.

    Make sure you are not insulin resistant and if you are stay on top of it with diet and get a prescription for Metformin.

    Dr's will not care if your hair is falling out and you are growing a beard.

    It is something that can be pretty successfully treated with diet, exercise and Metofrmin if you are IR. And I take D-inisotol which is expensive but definitely helps. Thre are some good groups on-line where other suffers post where you can glean a lot of information.

    BTW, cysts can not always be see on on an ultrasound. i guess that they can be very small and in a very specific area on your ovary. Find a Dr who will treat based on symptoms.



  3. #3
    Join Date
    Oct. 15, 2011
    Posts
    1,107

    Default

    I have PCOS. It sucks. Weight gain, facial hair, terrible anxiety, abdominal pain, Cousin Red visiting whenever she pleases instead of on a schedule...yay. I was on Beyaz for it but I had a bad reaction to it, so I'm currently on nothing. Trying to work up the nerve to go back the doctor but after that experience, I'm nervous.

    Soul Cysters is a good website to check out.
    *Wendy* 4.17.73 - 12.20.05



  4. #4
    Join Date
    Aug. 29, 2012
    Location
    Bahstin, Mass
    Posts
    640

    Default

    I'm also diagnosed with PCOS. No cysts, thank goodness, but all other classic symptoms. I am thankful to have a PCP who actually gives a damn and has gone above and beyond to help me keep this under control. I was on Metformin but I cannot stomach it—literally. We tried it experimentally as I am not IR. I ost weight because I couldn't keep anything in my belly!

    I have to use Rogaine, every day. I hate it. I need to go back to the doctor but I hate the doctors (even my awesome PCP!).
    Boston Strong

    Founding member of the Wheat Loss Clique!



  5. #5
    Join Date
    Mar. 19, 2003
    Location
    Palestine, TX
    Posts
    2,565

    Default

    Thanks, all! I luckily don't have the hair problems right now, but I have had periods of hair loss. And instead of gaining weight, I cannot keep it on, which is a less-typical symptom, but still annoying. The anxiety, exhaustion, acne, and painful cysts are all there, but also the fertility crap... 4 miscarriages, 1 successful pregnancy, no period for a looong time, then still no ovulation, then another miscarriage. So something's gotta give.

    I do lurk Soul Cysters occasionally, but don't really want to join unless I get a diagnosis. I'm not looking forward to making diet changes.

    I do think it has affected my riding. I want to have the energy and motivation to be competitive again.
    *#~*#~*#~*#~*
    Proud Momma of *Capital Kiss* and Bottle Rocket!



  6. #6
    Join Date
    Jan. 14, 2003
    Location
    Massachusetts
    Posts
    5,730

    Default

    Quote Originally Posted by archieflies View Post
    Thanks, all! I luckily don't have the hair problems right now, but I have had periods of hair loss. And instead of gaining weight, I cannot keep it on, which is a less-typical symptom, but still annoying. The anxiety, exhaustion, acne, and painful cysts are all there, but also the fertility crap... 4 miscarriages, 1 successful pregnancy, no period for a looong time, then still no ovulation, then another miscarriage. So something's gotta give.

    I do lurk Soul Cysters occasionally, but don't really want to join unless I get a diagnosis. I'm not looking forward to making diet changes.

    I do think it has affected my riding. I want to have the energy and motivation to be competitive again.

    I urge you to give inositol a try. for some people it makes a huge difference and maybe you will get lucky.



  7. #7
    Join Date
    Aug. 10, 2010
    Location
    NC/SC
    Posts
    313

    Default

    Going to try to resurrect this thread. I have an ultrasound scheduled for next week but suspect I may have PCOS. It came up bc we thought I may have had a chemical preg which prompted my visit to doc, so they are looking at it from that angle. I didn't know anything about PCOS until this happened and didn't realize it was difficult to diagnose. I am not having any of the weight/ insulin related symptoms right now but am concerned about what thus might mean for our chances of having a family. Anyone willing to share about what the treatment options are?



  8. #8
    Join Date
    Jan. 19, 2014
    Posts
    903

    Default

    Quote Originally Posted by EmJ628 View Post
    Going to try to resurrect this thread. I have an ultrasound scheduled for next week but suspect I may have PCOS. It came up bc we thought I may have had a chemical preg which prompted my visit to doc, so they are looking at it from that angle. I didn't know anything about PCOS until this happened and didn't realize it was difficult to diagnose. I am not having any of the weight/ insulin related symptoms right now but am concerned about what thus might mean for our chances of having a family. Anyone willing to share about what the treatment options are?
    (not a medical professional at all. Just supported a bff suffering from this)

    Did they run any bloodwork on you?
    It's important to know your hormone levels as those can affect treatment -ex. spironolactone for high testosterone or Metformin for insulin-resistance (occasionally prescribed for non-insulin resistant too).

    One of the primary issues that PCOS women have is a lack of ovulation, which means that many have success with simply a course of Clomid (which stimulated ovulation).

    Get a good reproductive endocrinologist if you want to conceive! (and can afford it with your insurance).



  9. #9
    Join Date
    Aug. 10, 2010
    Location
    NC/SC
    Posts
    313

    Default

    They haven't done blood work for hormone levels yet. Did draw some last week to rule out thyroid issue, which my levels came back normal for. They wanted to do an ultrasound first I guess to rule out any physical obstructions before looking into hormone imbalances. Now reading more about PCOS and thinking about my symptoms I am wondering if this is what's going on. (Terrible acne that didn't start until well into my 20's, hair loss, changes with my cycle which used to be quite predictable and easy is now painful, heavy and irregular).



  10. #10
    Join Date
    Aug. 10, 2010
    Location
    NC/SC
    Posts
    313

    Default

    My OBGYN does have an RE on staff so that is good news



  11. #11
    Join Date
    Mar. 24, 2004
    Location
    Pottstown, PA (East Coventry)
    Posts
    3,014

    Default

    I was diagnosed as PCOS without the ultrasound. My endocrinologists used hormones and other symptoms. In my case my Folical Stimulating Hormone and Lutenizing Hormone ratios was 3 to 1 and should be 1 to 1. (Or vice versa).

    Metformin has gotten me to the point of being regular with my cycle. Therefore it is likely I am now more fertile. I never wanted kids so not something I plan on testing out.

    I shave the chin daily. I will likely finish up the laser treatment there so I don't have to deal with that.

    I used to have cysts in my armpits, groin and bra line. The metformin helped eliminate those too.

    I have used Byetta in the past to help with the weight gain and need to go back on that.
    Oh, well, clearly you're not thoroughly indoctrinated to COTH yet, because finger pointing and drawing conclusions are the cornerstones of this great online community. (Tidy Rabbit)



  12. #12
    Join Date
    Jul. 21, 2008
    Location
    Surrey, UK
    Posts
    254

    Default

    I have it.

    The thing to watch out for is NAFLD -- non-alcoholic fatty liver disease. Which I have recently learned I'm at risk for developing. There are quite a few studies from 2007 onwards exploring the link between PCOS, insulin resistance and NAFLD. I don't know too much about it; the diagnosis, for me, is too new and I haven't had a physical (I was too busy being pregnant.) But it's something to speak to your doctor about and a good reason to treat PCOS even if you're not trying to get pregnant.

    I found metformin to be pretty unpleasant, to the point where when I developed gestational diabetes in my last pregnancy, I begged to bypass it and go straight to injection insulin. For me, the key to the whole thing has been getting my thyroid balanced. Once that happened, my cycles became regular and (surprise!) I got pregnant. I also lost all of the baby weight in the first week and three months on am below the pre-pregnancy weight -- I credit it to the thyroid meds.

    It was difficult to get the thyroid diagnosis. For just PCOS I was on spironolactone to suppress testosterone and metformin. That also regulated my cycles, but spiro can't be taken when trying to get pregnant, so I haven't had it in years. It worked wonders with the extra hair, though -- I might see if I can go back on it when I'm done with breastfeeding.



  13. #13
    Join Date
    Nov. 10, 2000
    Location
    Chicago, IL
    Posts
    1,588

    Default

    Quote Originally Posted by SonnysMom View Post
    I was diagnosed as PCOS without the ultrasound. My endocrinologists used hormones and other symptoms. In my case my Folical Stimulating Hormone and Lutenizing Hormone ratios was 3 to 1 and should be 1 to 1. (Or vice versa).
    Ditto and I have a crazy amount of testosterone. I was under the impression that it was fairly easy to diagnose with bloodtests - I had two separate OB/GYNs confirm my diagnosis by checking on my hormone levels.

    The problem with the ultrasound is that you may not have cysts present, which is why the bloodtest is more reliable.



  14. #14
    Join Date
    Jan. 17, 2008
    Location
    New England
    Posts
    1,968

    Default

    I have it too. Had a cystectomy a few years ago.
    Had a miracle baby. My hair is falling out. I gave up gluten and what a difference!
    mykidshavefourlegs.blogspot.com



  15. #15
    Join Date
    Feb. 18, 2011
    Location
    Phillipsburg Ohio
    Posts
    502

    Default

    Quote Originally Posted by sketcher View Post
    I have it. Good luck with a diagnosis because Dr's do not seem to care unless you are trying to get pregnant.

    Make sure you are not insulin resistant and if you are stay on top of it with diet and get a prescription for Metformin.

    Dr's will not care if your hair is falling out and you are growing a beard.

    It is something that can be pretty successfully treated with diet, exercise and Metofrmin if you are IR. And I take D-inisotol which is expensive but definitely helps. Thre are some good groups on-line where other suffers post where you can glean a lot of information.

    BTW, cysts can not always be see on on an ultrasound. i guess that they can be very small and in a very specific area on your ovary. Find a Dr who will treat based on symptoms.
    Yeah, this is pretty much my experience 100%
    OBGYN said "eat less, save up for plastic surgery, and call me again when you want to get pregnant."
    ~Former Pet Store Manager (10yrs)
    ~Vintage Toy Dealer (rememberswhen.us)
    Mom to : 1 Horse, 4 Dogs, 4 Cats, 1 Macaw, 6 (Former) Stepkids



  16. #16
    Join Date
    Jan. 25, 2005
    Location
    upstate New York
    Posts
    3,335

    Default

    This is eye opening. My 21 yo dd was diagnosed about 5 yrs ago after yet another bout of crippling pelvic pain. My ds had to carry her to the car for the trip to the ed where her blood pressure was so low, they whisked her back for eval. Iv morphine helped her pain and, on ultrasound, her pelvis had a lot of free fluid, blood and such from ruptured cysts. At her subsequent gyn eval she was noted to have multiple ovarian cysts.


    In the past year and a half she has gained a lot...a lot...of weight. She used to be a five foot nothing size zero. Now she is probably close to 50 lbs more. No acne or hair problems and she is on metformin, but I worry about her ability to conceive. She has been a natural nanny to her 6 nieces and nephews and she will be a great mom when the time comes, which I fear will be elusive.



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