How many with PCOS? (Maybe TMI for the guys!)

Discussion in 'Teacher Time Out' started by Ima Teacher, Jul 10, 2011.

  1. Ima Teacher

    Ima Teacher Maven

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    Jul 10, 2011

    In another thread I noticed several people who mentioned that they had PCOS. I'm just curious as to how your diagnosis came about and who made the initial diagnosis.

    I'd never heard of it until 5-6 years ago when a co-worker (also an RN) was talking to me about it. I did not think much about it because she was talking about infertility issues, and I was NOT trying to get pregnant. Later that year, I saw a new ARNP at my OB/GYN who said I had PCOS. I was not TTC, and I was not able to take Metformin/Glucophage due to a kidney issue. This whole time my family doctor was saying that I did not have PCOS. He felt that PCOS was being overly diagnosed.

    My OB/GYN moved, and I went back to my family practice doctor for all care, so I really haven't "talked PCOS" in several years. He's now partially retired, so I have had to find a new doctor. She agreed with my former doctor that I do not have PCOS. She did, however, feel that I have an issue, but is upset that the diagnosis of PCOS was made without taking a few things in my medical history into consideration and without having me see an endocrinologist.

    I'm in the process of being tested for Cushings syndrome, which does have symptoms that overlap with PCOS. My chiropractor even once asked me if I'd ever heard of Cushings, but he didn't elaborate.

    Part of me is relieved that I might actually get to the bottom of the medical issues I've have plagued me in the 10 years since I had to take massive doses of steriods for another medical issue. A bigger part of me is aggravated to think that the other office jumped on the PCOS diagnosis that fast.

    I guess I'm just curious about how others got their diagnosis so I can compare notes to see what things, if any, were left off of my PCOS exam and diagnosis.
     
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  3. waterfall

    waterfall Maven

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    It was actually my dermatologist who first caught onto it. I started seeing him when I was 16. I had (still have) mild acne, but it was incredibly stubborn. By the time I got to see him, I'd tried several meds from my pediatrition and none of them were working. We went through tons of different med combinations and still no results. He asked if my periods were regular, and I said that even though I'd gotten my first one about 5 years ago (at the time) they had never regulated. I'd get one every 1 1/2-3 months, with no rhyme or reason or even schedule at all. That is a major red flag for PCOS, especially combined with the acne. I also had some dark spots on my skin (namely by my elbow creases and behind my knees), which is another sign. He sent me to an adolescent gyn to talk about going on bcp for the acne and possibly testing for PCOS. The funny thing is, I'd actually read an article in Seventeen magazine (remember I was 16 at the time, lol) about a girl with PCOS and I was sitting there thinking that I might have it!

    My mom was in that derm. appointment with me, and once he started talking about it she said that she thought she had it. Her dr. never mentioned it to her until she was in her late 30's, but she definitely had all the symptoms. The derm. was talking about how it causes central weight gain, and once you gain weight there you produce more cortisol, which in turn makes you gain even more, which produces more cortisol, etc. ect.- a very vicious cyle. My mom said that's exactly how her whole life had been. I only weighed about 115 at the time, but it was obvious that I carried any weight I had in my stomach. Although research hasn't been able to prove it's hereditary (since they don't know the exact cause) it often does run in families.

    I went to the gyn. and she blew me off right away because I was at normal weight. Most people with PCOS struggle with obesity due to insulin resistance. There seems to be some ignorance in the medical profession about PCOS- they think it's all related to being overweight. There is even a debate about which causes the other (does being overweight cause PCOS or does PCOS cause being overweight). Patients are often told that if they can even lose a small percentage of their body weight, they'll get rid of PCOS symptoms. However, obviously in my case and in the case of other average sized people with PCOS, that's not always true. I have just as many symptoms even though I maintain a healthy weight. Finally, as the dermatolgists' insisted, I got the blood tests done and that's how I was diagnosed. There is no clear "diagnosis" for PCOS- they test different hormone levels in your blood and it's basically a diagnosis of exclusion. From what I can remember (I was diagnosed almost 10 years ago) you also have to have irregular periods as well as at least 2 other symptoms. From my understanding, if your periods can regulate themselves (with no bcp) you do not have pcos. Here are the common sympotms that I know of: acne, hair loss, increased facial hair growth, elevated testoterone levels, central weight gain, infertility, a "hump" on the top of your back (like cushings, only it's not painful), dark patches on skin, skin tags. Lovely, isn't it?

    I went on bcp and that helped a ton. It's the only thing that can keep my acne at bay since it's hormonal acne. I also take some topical meds in addition to that for my skin. Obviously, the bcp also regulates my periods. I tried to go off it once, and started losing my hair. Apparently it also regulates your hormones so that sympoms like hair loss or facial hair don't happen. Of course, I went right back on it. I eat a 1500 calorie diet and spend about an hour a day in the gym. Excercise is supposed to really help your hormone levels as well. Even doing all that though, I still am at the very top of my "healthy" weight range. I know many people with PCOS have had success with low-carb diets. I would HATE that, but it may get to a point where I need to try it.

    I've heard that 10% of women have PCOS and that it's the leading cause of obesity among women. I often find that almost no one has actually heard of it though, which seems strange. My dr. told me that most women who have it are unaware of it.
     
  4. MissCeliaB

    MissCeliaB Aficionado

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    I was diagnosed at about age 16 or 17. I was having very irregular, very heavy periods, and I had the body hair growth, as well, which is what clued my doctor in. I only have a few of the other symptoms.
     
  5. Ima Teacher

    Ima Teacher Maven

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    I think the age I started having symptoms is odd, too. Everyone I have talked to was either diagnosed young or had the symptoms young. I was 32 before I had my first symptom. They started about six months after getting off steroids. I was taking 100 mg d day, and I gained 90 pounds in three months. I changed so much that people didn't recognize me.
     
  6. loves2teach

    loves2teach Enthusiast

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    I was diagnosed about 9-10 years ago. I have gained about 100 lbs since then- nothing takes it off (I have tried everything) except metformin. I took metformin for about 6 months, but I can't afford to go back to my specialist to get another prescription. Maybe if my husband can find a job in the near future, I can.
     
  7. Sarge

    Sarge Enthusiast

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    I just realized, after reading this WAY too closely that "TMI" is indeed, NOT the acronym for male version of a medical disorder for which the acronym is "PCOS"

    Still not sure what PCOS is, but also not sure if I want to know either.
     
  8. waterfall

    waterfall Maven

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    Were you on birth control in your 20's? I think most people end up taking bcp, which masks a lot of the symptoms and then they go undiagnosed. My symptoms were very subtle in my teenage years and could have easily been passed off as "teenage stuff" (as irregular periods and acne often are). I was lucky my dermatolgist was so astute. I didn't notice severe symptoms until I tried to go off the bcp earlier this year, now that I'm in my 20's. Depending on how old you are, I think PCOS is relatively "new", at least in regards to people actually knowing about it. Even being diagnosed 10 years ago I spoke to a lot of medical professionals that didn't know what it was! My mom's dr. told her she'd definitely had all the symptoms since she was younger, but unfortunately no one just knew what PCOS was at the time. Since she didn't get any form of treatment until her late 30's, she has a lot of long-lasting effects from being overweight and not being able to lose it. She's had success with metformin and a low carb diet as well as tons of excercise, but her dr. told her she'll probably never be a normal weight again.
     
  9. Ima Teacher

    Ima Teacher Maven

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    Nope. I was 30 before I ever took BC, and I took it less than a year because it messed with my blood pressure so much. I'll be 41 in September. The doctor asked me a lot of questions about when my symptoms started, and I didn't have any of them other than high blood pressure until I was 32.
     
  10. Caesar753

    Caesar753 Multitudinous

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    I was diagnosed when I was about 25, which was a year or so after I stopped taking birth control pills (which I had taken since I was about 17). My doctor at the time ordered a bunch of labwork and told me that several of my levels were way off. I don't remember exactly what hormones were off, but I think she mentioned FSH.

    I'm 30 now and see an endocrinologist. He isn't convinced that I have PCOS per my labwork, but he treats me with metformin as if I do have it. The metformin helps with some of the symptoms but isn't ideal and doesn't address my weight which is the biggest problem that I have. We haven't found a better medication, though.

    These days my labwork is consistently good/normal. I honestly don't know what I have, and my doctors seem stumped too. They've checked me for pituitary disorders, thyroid issues, and about a million other things. I have some very obvious and classic symptoms that are enough for everyone to know that it's definitely something, it's just that no one seems to know exactly what. It's very frustrating.

    What's especially frustrating is that I look like someone who has diabetes, and metformin is commonly prescribed for diabetes. Whenever I go to the walk-in clinic or ER or any new medical place for a check up or cold or whatever, I always get bombarded with questions about diabetes, what's my blood sugar, why haven't I checked my blood sugars this morning. One nurse and one doctor have literally shouted at me when I told them that I don't check my blood sugar (because I'm not diabetic....). They always want to prick my finger and do a test, and I always refuse. One time I didn't refuse because I was just so exhausted and they weren't listening to me. The nurse was like, "Oh, your blood sugars are very good today." I was like, "Um, yeah, because even though I look like I am diabetic, I am not, which I tried telling you and which you did not believe. I'm trying to advocate for myself and for my rights as a patient, but you're treating me like I'm stupid and like I don't know what I have and don't have." It's an ordeal every time, I tell you what.
     
  11. WaterfallLady

    WaterfallLady Enthusiast

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    I supposedly do, though I am not sure if I agree. The doctor performed a blood test to diagnose me. I have excessive hair, but it's common with my background. I have irregular periods, but they never end, they aren't few and far between like most women with PCOS. I have no cysts, I'm not overweight, and my sugar level is great. I'm not sure what that's about. My only symptoms are really long heavy periods and hair.
     
  12. chicagoturtle

    chicagoturtle Fanatic

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    Jul 12, 2011

    I do. I also have endometriosis and many other "autoimmune issues" without a diagnosis. ( which is quite frustrating and scary, but I'm learning to live with it). There is a debate about if PCOS and Endo are autoimmune disorders. My PCOS was found out when searching for a reason for chronic pelvic pain. I had the cysts, though when I had my e do surgery and an exploratory lap, none were seen. (both were after years on the pill). I also have excess hair and am losing hair on my scalp. I had irregular heavy periods before the pill.


    I'm still getting used to typing on the iPad.
     

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