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KACEYSW's Photo KACEYSW Posts: 2,605
11/23/12 11:26 P

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You need to find a doctor who will listen to you. Do some research with some of the doctor rating sites that deals with doctors from your area. There has to be someone who can treat you better than you are presently.

Also, a good OB/GYN can also help with your wish to get pregnant. They should be more than willing to assist you with information, strategies, and other information.

Refuse to be beaten by inanimate objects, inflexible minds, and incompetent practices.


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CHRIMSONFYRE's Photo CHRIMSONFYRE SparkPoints: (103,723)
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10/4/12 11:49 A
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I'm not too fond of my endocrinologist, he doesn't set me up with regular check ups or anything, I have to call and be like hey, it's 6 months, should I check my hormone levels again? He knows I want a child, he knows I have PCOS, he knows I need to lose weight, yet he never tells me when to schedule my next appointment or gives me any advice to help me reach my goals.
Anyone else have this issue?

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MAMA_LIANA's Photo MAMA_LIANA Posts: 256
9/29/12 12:14 A

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I had issues getting a diagnosis too. I came to my new Dr. Explaining my symptoms and she took one look at me and said "you don't have PCOS." I explained that I eat a healthy low carb diet, properly balancing protien, complex carbs, fat, and fiber in order to control my reactive hypoglycemia, and that until very recently I exercised very regularly. She humored me and ordered some tests the told me the were "normal." I saw another Dr. For my migraines and she looked at my chart and started asking me questions about my symptoms and looked at my lab tests and said "you definitely have PCOS." Same symptoms, same lab results, opposite opinions. I'm trusting the dr who works closely with the endrochronologist and not the one who admitted she didn't even know what tests she should order and would have to ask.

IMOFF2DLOONYBIN's Photo IMOFF2DLOONYBIN Posts: 916
8/9/12 1:43 A

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I agree! When I was first diagnosed with PCOS my gyno had run some blood tests. Before she even knew what I had she gave me a couple pamphlets about PCOS and endometriosis since she wasn't sure which I had and told me to not look on the internet. Then when the blood tests came back her NURSE was the one to tell me over the PHONE. I wish I was the person I am now because I would have handled it so much better and found another gyno. As it is I haven't seen another one since and just see my primary doctor. I've been thinking about going to see another one but that experience was just so bad I'm not sure I want to. SO, who do you see? A gyno or endocrinologist? Or both?

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JENNWIN123's Photo JENNWIN123 Posts: 11
7/24/12 5:53 A

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Doctors definitely need to learn bedside manners! I was diagnosed with PCOS four years ago, the summer before I started college. I guess I was lucky in that the doctor I was seeing at the time was pretty knowledgeable about PCOS, at least in being able to recognize the symptoms, but her delivery was absolutely horrible. When I first saw her, she just kept going on about how I need to lose weight, I'm overweight, it's not healthy, blah blah blah. Keep in mind that I was 18 at the time, on the precipice of huge life changes, and I didn't need that blow to my ego. Then she gave me a prescription to birth control and sent me on my way. When I left the appointment I talked to my stepmom she also agreed that she could have been nicer to me (I made her go into the appointment with me, it was my first papsmear and I was really nervous about it.) Anyway, I saw her a year later, after using the BC for a year, and I told her I wasn't really happy with the pills, because I was feeling depressed, and I had stopped having a period. She told to me to just keep taking the pill, that it would be fine, without listening to my concerns at all. Then she sent me to an ultrasound and lo and behold, I had PCOS. Although she was spot on about the PCOS, because she suspected it the first time I saw her, she was absolutely useless after the diagnosis, just telling me to lose weight and that when I did that, my periods would begin to regulate themselves.

I just couldn't believe that she was ok with keeping me on the BC even though I told her that it was ineffective at cycle regulation for me and on top of that, it was causing depression. I made the decision a few months after that to stop taking the pills, and things got better from there, but I refused to see her again. Since then I haven't found a doctor I'm happy with, but I'm going to see a new gynecologist in about a month or so, after I have finished moving to NY, so maybe that will go better? I am hopeful!

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JENSAPP2001 SparkPoints: (773)
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7/19/12 3:51 A

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the symptoms improve (usually) but it never goes away. I am 294 pounds, my little sister 115 (and she is currently preg.) We both have PCOS and are proof that weight is not the indicator as to the whole argument... lose the weight and it will go away.

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ROADRUNNER201's Photo ROADRUNNER201 Posts: 623
7/9/12 2:09 P

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You are so right, Julmut! When I was going through trying to figure out what was wrong with me, there were times when the doctors would be like, Well, we ran these tests and everything looks good. Then I would press for something else. I believe if I hadn't kept pursuing other possibilities, I never would have gotten this diagnosis.

The joy of the Lord is my strenth. ~ Nehemiah 8:10

�Whether you think that you can, or that you can''t, you are usually right.�
~ Henry Ford


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JULMUT's Photo JULMUT SparkPoints: (20,964)
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7/9/12 12:27 P

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pcos is definitely the type of thing where you have to educate yourself and not be afraid to advocate for yourself to get good quality treatment. it's discouraging that it's like that, but that's why I like this spark team so much... the ability to share knowledge and experience is so valuable!

Dream as if you'll live forever. Live as if you'll die today.
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If you have to tell someone how bad you want it, then you haven't shown them how hard you already work for it.
-John Mayer

Whether you get what you want isn't what defines you. It's how you go about your business.
-Scott Jurek






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LADYLIGHTY Posts: 6
7/9/12 2:21 A

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this is SO comforting! My ob/gyn basically ignored everything I said (3 months of low gi dieting and 4/week workouts at KokoFit with no visible results) nodded and said "yup, you've the thrifty gene, and that polycistic gene, now let's talk about that IUD I want you to have" So I went to my gp, got another prescription for metformin and yet another bcp, and tomorrow's a new day... Here's hoping that scale finally budges past 195...

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7/8/12 12:52 P

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So...have any of you found a good doc in New York City??? I'm still looking

TAYVIE's Photo TAYVIE Posts: 130
7/7/12 2:28 P

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PCOS is definitely something that a lot of people don't understand. There really hasn't been a lot of research done on it and a lot of what is known has been done by theory with some low risk experimentation. I can definitely say that a lot of people are not understanding and can be complete jerks, but I can also understand where they are coming from. You may see 15 patients in a day that are morbidly obese. Of those, maybe 2 will admit to overeating, the other 13 will say that they don't understand why they are overweight because they eat healthy, don't eat very much, etc. And some you will see walk into the office with their McDonalds bag. So just a slight to their defense, you definitely hear people say it a lot, but I do believe when someone presents a concern, you should listen to it. There is a difference between people taking defense, and people coming and saying I've been working hard, eating nothing, and I'm gaining weight!

With that being said, I was also in the chair having someone tell me that losing weight is 100% about calories in and calories out. That I needed to eat less and workout more. I came back into her office a month later with a diary documenting 1000-1200 calories per day with 1-2 workouts every day and ended up gaining nearly 20 pounds. Then, she listened to me. She ran a panel of a bunch of tests. When she got the results back, they indicated PCOS, but she didn't even notice that. She looked at another test that she thought was concerning and was going to make me have a serious workup including a possible overnight stay in the hospital to do some labs. From the lab results, I had already diagnosed myself, I just wanted confirmation. So I found an Ob/Gyn who was in my insurance network who was certified in reproductive endocrinology. I walked in the office and she told me I had pcos before even looking at anything. I gave her the lab results, and she told me I was officially diagnosed, but that she didn't even need the labs to tell me that's what I had.

I have done a lot of research on things myself and am more than willing to break down certain aspects if people are wanting to hear about it, but don't want to make this post too long with that if nobody cares to hear. Just know, you are definitely not alone, but that you need to feel comfortable with and have confidence in your doctor. if you don't, change...there are plenty out there



...taking it one day at a time!


It is never to late to be what you could have been!


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ROADRUNNER201's Photo ROADRUNNER201 Posts: 623
6/17/12 10:57 A

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I think a lot of doctors just don't understand that much about PCOS and that's where all the cross talk comes in.

The joy of the Lord is my strenth. ~ Nehemiah 8:10

�Whether you think that you can, or that you can''t, you are usually right.�
~ Henry Ford


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AJHONDRNGAL's Photo AJHONDRNGAL SparkPoints: (35,397)
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5/16/12 4:55 P

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I'm glad to join this rant. The fist I suspected I might have pcos was when I was trying to get pregnant with my third child (5th pregnancy). I needed clomid to get it done. I had never been overweight until after my first miscarriage. That doctor hinted that I might have it, but never came right out and said, "Let's check this out." The first doctor in Boise might have been on to it and trying to help, but he didn't explain what he was doing. So I felt he had slapped me into taking metformin "just for weight loss" and since I didn't have diabetes I stopped taking it after two weeks. Looking back, he might have known what he was thinking, but didn't explain it well enough to me. Since then all the doctors have been dorks. Everything from "Let me set your goals for you and if you don't perform..." to "You'll be on bp meds the rest of your life because I don't believe in giving my patients false hope." That was the doctor that ignored me when I said directly to her, "I have symptoms of PCOS."

I'm hoping this new doctor will do something since he brought it up. I'm also seeing a naturopathic doctor so I'll try working through natural means before meds.

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VOLLEYBALLROCKS's Photo VOLLEYBALLROCKS Posts: 50
9/10/10 4:47 P

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I have found a endo that gave me a clear diagnosis and is so fantastic. He's a very matter of fact guy and I have very mild symptoms besides not being able to lose weight (and of course i'm super sensitive about that). He has just said that it will be very hard for someone with pcos to lose weight but that it is great for me to keep trying healthy ways (exercise!). No unreasonable pressure or guilt!

"Tomorrow is a new day with no mistakes in it yet"


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GAJEN2345's Photo GAJEN2345 Posts: 300
9/7/10 11:10 P

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I guess I have been lucky. The two doctors that I have seen have both been very helpful and knowledgeable about PCOS. The endocrinologist that I see, made sure to run blood work to check before diagnosing PCOS. But, I have had drs. that want to put every problem I had due to being overweight.

Jennifer


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ADOREBLUE's Photo ADOREBLUE Posts: 17
9/7/10 3:25 P

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Wow, I want to say thank you to each and everyone who has posted here. I have never had regular periods and it was only a few years ago that my OBGYN told me that i "might" have PCOS. She gave me some web address's and that was it. As I grew older, gained more weight, she prescribed me Metformin (which does not work for me at all). It was only this year (a few days ago, actually) that when I arrived at her office to have my IUD removed so that my husband and I could try to start a family she bluntly told me she would not help me. I would have to loose a ton of weight and it would be next to impossible to do either with PCOS. (pretty much the first time it was "confirmed" that i had it). Well i left the appt in tears. I felt as though i had been ambushed.

Hearing your stories let's me know that I am not alone. And that this doc that i have trusted my whole adult life..is most likely not my best ally.
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It isn't enough to talk about peace.

One must believe in it.

And it isn't enough to believe in it.

One must work at it.

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RACHIEMCD's Photo RACHIEMCD Posts: 9
9/5/10 5:11 P

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Ugh, I know how you guys feel. I was diagnosed in the 7th grade(I was like 12 or 13) and my doctor was so mean to me. I was skinny before the PCOS hit me and that's how they found it. I gained a ton of weight. I was around 5ft. at 165 lbs. The doctor told me I had to lose 30 lbs or I was going to get diabetes. Then she looked me up and down and with a dirty look told me she didn't think I could do it. I changed doctors. I'm not longer that heavy but I'm still not comfortable. My gyno tried to tell me my PCOS was gone last year when I got down to 125 lbs. I told her I didn't think so. She of course wouldn't listen. Then I gained another 10 lbs. I hate doctors. emoticon

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STEPHANIEG2010's Photo STEPHANIEG2010 Posts: 27
9/3/10 5:30 P

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I Understand what you mean i went to 3 doctors before i found my current one and she is awesome but the 1st one i seen didnt even want to check into it the second didnt find it weird that i would only have 2 or 3 periods a year and the third found the pcos but told me i needed to lose weight to get rid of it and walked out of the room lol and every month i went back reminded me i had not lost anything but your right just because we are overweight we should not get treated so differently its like people are scared we are going to give them fatness lol

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FIRESTARINFINI's Photo FIRESTARINFINI SparkPoints: (27,521)
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8/27/10 8:42 A

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That's why I like my primary care Dr.
She is overweight and basically told me, if it was easy to lose weight we all would have done it by now.

I like it when people are reasonable with me.

Finish each day and be done with it. You have done what you could; some blunders and absurdities have crept in; forget them as soon as you can. Tomorrow is a new day; you shall begin it serenely and with too high a spirit to be encumbered with your old nonsense.

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BEEBEA's Photo BEEBEA SparkPoints: (46,622)
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8/27/10 12:54 A

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Lol, I had the opposite experience with my doctor. He agreed that I 'probably' had PCOS and suggested I get on the Pill. When I timidly asked if I could try to lose weight first, he said, "Let me know if you find a way to do that," and slapped his own big belly. Haha.

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FIRESTARINFINI's Photo FIRESTARINFINI SparkPoints: (27,521)
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8/18/10 1:17 P

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Most of the Doctors I went to in order to understand why I was missing my period were absolutely useless.
"You're missing your period because you're over weight"---but I've been overweight most of my reproductive life and have had regular periods.
"You have PCOS because you are over weight, and you are over weight because you are insulin resistant"---But my sugar levels are fine.
"You have insulin resistance, it must be your insulin levels"---But the blood test says that my insulin levels are fine.
"You have PCOS because we've been tracking that one cyst that hasn't been growing in a year."---Oh, the reproductive endocrinologist, who I finally saw after a year of dealing with a gynecologist (who was insistent that birth control would, cure my PCOS (even though she couldn't explain what triggered it (which is what I wanted to know), make my periods regular, and clear up my acne; which to me personally, is not reason enough to mess with my hormone levels, and an endocrinologist (who told me I was insulin resistant without the evidence to back it up besides the fact that I'm over weight), the reproductive endo told me that the cyst was nothing to worry about.

So the only evidence that I have PCOS is: I missed my period for 6 months, I have high FREE testosterone levels, and a cyst that isn't significant.

Oh, and I'm overweight.

Edit:
Did you guys know, that in order to lose weight my gynecologist told me that you have to go to the gym more than once in a while?

-_-



Edited by: FIRESTARINFINI at: 8/18/2010 (13:18)
Finish each day and be done with it. You have done what you could; some blunders and absurdities have crept in; forget them as soon as you can. Tomorrow is a new day; you shall begin it serenely and with too high a spirit to be encumbered with your old nonsense.

- Ralph Waldo Emerson

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MEGZY6001902's Photo MEGZY6001902 Posts: 63
8/10/10 10:17 P

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I understand you all feel..It took me 8 months of no periods to get diagnosed. I went to the doctor to start off with because i was 1 month late for my period coming off BCP(Hubby and i want to start a family) which i have never been(i was on once before to regulate my cycle as a teenager)that late every. He said sometimes coming off BCP your body takes a few months to adjust to coming off. Anyway 3 months later still nothing so i went back. He said i should be getting my periods now. He said its just stress and says in the exact words "Try losing some weight because your fat." in which caused me to walk out of the office as i found that very offensive as i've tried everything to lose weight. It took me a couple of months of still no periods to eventually get another doctor (this time a female)who was willing to help me, she ran some blood tests to rule out a few things like thyroid etc. Which came back normal except for my low iron which i already knew about. She referred me to a Gyno who was and still is willing to help me, who ran ultrasounds and more blood tests that confirmed PCOS. She has given me a round of Provera to kick start my period then Clomid to induce ovulation. She also suggested I try a Low GI diet to help with the weight loss as i have insulin resistance which makes it even harder to lose weight.
I think really if you want to see a doctor i would suggest talking to a female doctor(not saying male doctors arnt any good)as they are more likely to understand and more willing to help.
Hang in there ladies, there will be a doctor out there more than willing to take you in and help.
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~:~Megzy~:~


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EIRIANAITHNE Posts: 3
8/2/10 1:23 P

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A LOT of doctors seem to believe that this is a fat person problem. I hate how they love to think that it is ALL your fault and when you say you are trying to do something about it they basically call you a liar. I have been trying to lose weight and at my old job I would walk 13 miles in 12 hours 3 to 4 days a week. My doctor said I wasn't exercising enough. I am still looking for a doctor who "believes" that this isn't self inflicted and we need a little bit of help to stay healthy (NOT using birth control to cover it up!)

DEZERTFAIRY's Photo DEZERTFAIRY Posts: 72
7/12/10 2:01 P

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Im sorry that you had some rude docs. But I absolutely agree that PCOS is NOT a "fat person's disease". I was not over weight at all when I first suspected PCOS to be my problem. And I have a number of friends who are not over weight, or only slightly so, that have PCOS. So its a poor misconseption that you can only have PCOS if you are over weight. Or that you can get it by being so.



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7JKUE02 Posts: 18
7/12/10 1:50 P

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My last gyno told me that 50% of people with pcos are overweight and 50% of overweight people have pcos... which sounds like the same statistic to me but whatev and she also said that pcos isn't caused by me being overweight and my weight isn't caused by my pcos ... so what gives? why is it that pcos is a "fat people" disease? Every dr I've went too isn't suprised that I have pcos... its like the new diabeties. Ohh and my old gyno is dead now, she had a tragic accident, but before that she was giving me a pap and said she could barely feel my organs... why not just call me a fat ass and get it over with??? It bugs me how these dr's can treat people like they are no good, just because we're overweight. Maybe they should give us more caring and consideration and god forbid treat us like people... ok, so not the shortest rant, but my new doc was excited to try to help me get pregnant, she was positively glowing and it was an awesome feeling, I didn't feel broken anymore.

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