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Polycystic Ovary Syndrome (PCOS) Message Board
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Old 09-28-2003, 07:06 PM   #1
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Post Anyone have PCOS?

I've been reading up on Polycystic(?)Ovarian Syndrome. From what I can come up with, I have many of the symptoms...large belly, hairy chin, cysts and acne on face. I have had a few cysts from my ovaries removed over the years, and was told 5 years ago when I had my hysterectomy that I had another one, but they didnt remove it. Has anyone been diagnosed with this and how do you treat it? Can having your ovaries removed help?

 
Old 10-01-2003, 07:32 PM   #2
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Hi - I have PCOS, and I have to tell you, it stinks LOL. I have not had any cysts removed, but have been taking birth control off and on almost my whole adult life. My cycles are horribly irregular if I don't, and I am having a heck of a time getting pregnant. Glucophage didn't seem to help much, but I only took it for about 6 months. My doctor is paranoid about giving out too much (what he feels) unneccesary medication. Anyway, I constantly live in fear any time I have pain near either ovary.... i am scared to death about cancer. so much so that i worry myself sick sometimes. I am even afraid to go back to the doctor. Crazy I know.... I have been having some pains over the last few weeks (more like pressure around my pelvis) but I am pretty sure that it had to do with my back being out of whack (maybe I am just trying to convince myself - LOL)A couple more visits to the chiropractor and I'll know for sure. If that doesn't help, I guess I'll have to drag myself to the gyno. I haven't heard anything about having ovaries removed as a treatment. I am 34 and I too have all the symptoms you mentioned....

 
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Old 10-01-2003, 10:22 PM   #3
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I do! I do! I have it! It stinks (I agree with previous poster).

These are my symptoms:
-larger middle section
-adult onset acne
-painful ovaries
-dark ring of skin patches around neck
-insulin level elevated, but sugar level normal
-a raise in hormone levels
-Infertility
-Cysts on ovaries
-no ovulation

Many doctors overlook this, so if you are not getting the attention you feel is needed, please please go to another doctor and have him/her listen to you. Go to a PCOS website and print out the info. Take it with you. If they don't know a lot about it, you show them. A lot of them are starting to come around to it, but still....my gp knows very little whereas my OB and my Reproductive endocrinologist knows tons, so it is really a different case from doctor to doctor. Even my OB did some blood tests, but didn't know really much else to do. My Reproductive Endocrinologist knew all the right tests to do and did them right away. The biggest red flag done with tests so far has been the high level of insulin. If your insurance does not require pre certification for things (or referals) I would suggest finding an endocrinologist and go to them. That is who can order the proper tests. (unless you are interested in having children and therefore you would want to go to a reproductive endocrinologist) If you don't know of a good one, call your insurance company. They can suggest one. If you need a referral, go to your OB and he or she can send you to one. Good luck to you. Take care of yourself and make sure to get this checked out. If you do not get treatment, you can end up with Diabetes. You REALLY do not want that. The good thing is...a lot of women react well to the meds they can prescribe and they lose weight immediately. So, that is a great initiative! Please keep us updated because I will be thinking about you! Do a search for PCOS on the net. You will find lots of support and good info.

 
Old 10-01-2003, 10:23 PM   #4
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And by the way...if you do not have all the symptoms...that does NOT mean you don't have it. You may only suffer from ONE symptom and still have it. That is why you have to get it checked out!

 
Old 10-02-2003, 03:21 AM   #5
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it's weird too because sometimes you might not even have cysts even thought the name includes it. i don't know if i really have it actually. the doctor just strongly suspects it based on some of the symptoms i have. does anyone know about just having a mild case of this?

 
Old 10-02-2003, 06:57 AM   #6
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That is very strange i think too. I would guess that the high hormone levels typically cause ovarian cysts, but not all the time. I guess at any time you could "potentially" get cysts and hence the name. I am no doctor though!

Everyone I have talked to usually has quite a few symptoms, the most common being the middle weight gain. That is the most miserable for me. I have always been pretty small until the past few years. Then boom...all this weight just piled on. It is very depressing! However I have heard that the weight can come off quickly if you get medicated properly.

I would think, however, that you COULD have a mild case since you only have to have one symptom to be able to be diagnosed. The best thing would be to call your doctor and have a blood test right away. Remember...your doctor is working for you. If they will not test you, move on to another doctor. There is no reason to NOT do this simple blood test.

Good luck to you all and keep me updated!

 
Old 10-04-2003, 06:48 AM   #7
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Hi,
I too have most of the symptoms but also I have actually developed Diabetes! I don't know whether they are linked but most cases I have read say that they are. PCOS is such a nasty thing as a lot of people don't take it that serious but to a woman it can have a very hard impact. I dread the day that I start trying for a baby cause that is the main thing that I would want. It also messes with your emotions - which I hate! Is it just me that feels this "down" and negative about having PCOS????

 
Old 08-09-2004, 04:08 PM   #8
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Re: Anyone have PCOS?

Please dont stress people - ive been reading for weeks on this and its VERY MANAGEABLE!!!! The ONLY long term issue (aside from the general issues if its not treated) is pregnancy which can be dealt with easily (not guaranteed but VERY good success rates today) my sister has it, went on meds/treatment and was pregnant within 2 months, and ALL her sympotoms cleared up. All the doctors her and I have seen are encouraging , there are many drugs to help the symptoms and keep the levels more balanced and all say diet, exercise, vitamins, lower carbs, and testing is a huge impact. They all were optomistic in terms of managing it - but get ALL the tests done as well as an ultrasound.

Last edited by missdiva26; 08-09-2004 at 04:08 PM.

 
Old 09-28-2004, 06:56 AM   #9
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Re: Anyone have PCOS?

i have some of the symptoms, big belly, facial hair, irr. periods, severe pain but they only saw small cysts on my ultrasound, i was diabetic when pregnant and sometimes feel like my sugar goes high after i eat but then it goes back down after a couple of hours. also get very low sugar when i miss a meal. i also have polycystic kidney disease, how do they test and know for sure you have it? (pcos) also one gyn doctor i saw said i looked like i had x syndrome, i think its when your insulin resistant. does anyone have info on it?

 
Old 09-28-2004, 07:10 AM   #10
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Re: Anyone have PCOS?

yeah, symptoms can vary soooo much.
The only symptoms I really had were irregular periods (they stopped for 6 months so i'm now on birth control and get them regularly), and severe adult-onset acne. I'm of normal weight and so the first endocrinologist I went to mentioned PCOS as a cause for acne but told me i didn't have it because I was normal weight. But I went to the second endo who suspected PCOS again - I got an ultra sound confirming it.
I don't know whether I'd be considered a mild case because I only have two symptoms...but my acne was severe (gone now that I'm using spironolactone).

 
Old 09-28-2004, 10:59 PM   #11
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Re: Anyone have PCOS?

el_9_el

You only take Birth control pills? u dont take metformin? ARe u IR?
i only have amennorrhea as a symptom(i am in normal weight too) and i take metformin and i'm not even IR

 
Old 09-29-2004, 05:29 AM   #12
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Re: Anyone have PCOS?

I'm on birth control. And am still on a bit of spironolactone for the acne (I'm in the process of weaning myself off it completely). Nope, I don't take metformin and I'm not IR as far as I know. I had one fasting blood-test that showed my insuling levels are normal...but I've not had the tests that assess how your level changes with food. Why does your doctor think you should be on metformin?

 
Old 09-29-2004, 10:40 PM   #13
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Re: Anyone have PCOS?

Coz she said we have diabetes in our blood (my grandma and aunt has em) and i might be prone to having one ?!?!

And i read about stuffs that metformin works even if ur not IR *shrug*

 
Old 10-14-2004, 03:54 PM   #14
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Re: Anyone have PCOS?

both my endo and gyno said metformin wont do much if youre not ir, although i guess it couldnt hurt BUt my sister took it anyway and now is stuck on it and not sure what will happen when she goes off - she doesnt know if its that or the BCP or the new diet etc thats helping. I decided to just go on yasmin and change my diet/exersise /vitamin process, rather than getting on ANOTHER drug that im not even sure would work. I guess if a year goes by and nothings improved maybe I'll see about trying, though I hear there are some other drug options for non IR pcos'ers

 
Old 10-14-2004, 07:46 PM   #15
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Re: Anyone have PCOS?

I have had ovarian cysts since I was 15 (I'm 20 now) and been on bcp since then as well. My doctor never did blood work, but said that I had it because i have certain symptoms. I have coarse hair on my arm and hands (which I shave cause it bugged me out), I have multiple cysts, and I have facial hair which I'm working on laser removal cause it too bugs me out!

 
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