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DOWNIE1986's Photo DOWNIE1986 Posts: 12
9/23/09 4:10 A

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Well ladies, Ive decided to swith GPs and I have my "New Patient Health Check" at the end of this week, so I'm hoping that a fresh new doctor and a fresh new outlook on things may help! I think its time I kicked some ass, I'm fed up of not being listened to and being told "what is best for me"!! I shall let you all know what happens when I see my new Do- fingers crossed they listen and get the message :D

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CCSOGIRL's Photo CCSOGIRL Posts: 447
9/22/09 7:10 A

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oh goodness yes, my doc referring me to an endocrinologist was the best thing that could have happened to me! and he knows i am not fat = lazy. he monitors my blood levels of everything under the sun every eight weeks. i couldn't take metformin or glucophage -- made me sick as a dog! so i am taking actos instead (but some insurances don't cover it, its a drug from japan) but that is working for me. i have it all the pcos, IR, and meta syndrome. and the fatigue, no periods, headaches... caterpillar eyebrows and weird hairs that pop up everywhere (scullyscry your mention of "manhair" made me crack up) i have this weird black thick hair that keeps coming back on my wrist!! and one on my nipple!! how yucky is that. tweezers are my friend!!
ccsogirl

live love laugh! kiss slowly and forgive quickly.


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SCULLYSCRY Posts: 2
9/21/09 2:33 P

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Wow, aren't doctor's great...if you could lose 3 stone on your own you wouldn't be sitting in their office asking for help! I've been dealing with a lot of the same issues as you over the past 10 years. I can tell you that I was able to get pregnant with out using fertility drugs - I took Avandia & Metformin for over a year and a half before I got pregnant (it helped me to have regular cycles). Once I was pregnant I continued to take Metfornin to reduce possible miscarriage. I weighed from 290 to 330 lbs start to finish. My son was born healthy and big (10 lbs, 6 oz) by c-section. It was after having him that my body really really crashed and I'm still trying to recover (not that I wasn't having problems before, it just got much worse). I was bleeding for a year before I had polyps removed and the Mirena IUD put in (it took 6 month for it to stop the bleeding). Recently I've been switching over to a more whole food, less/no processed food diet, to treat the insulin resistance and have had some improvement (crossing my fingers!). I get tired of dealing with the weight problems, fatigue, aches & pains, man hair, hair loss emoticon , etc. Just know your not alone! I hope you're able to find a doctor that will actually work with you, and not just see you as 'fat = lazy'.

SW 351+

PCOS, Hypothyroid, Insulin Resistant


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SFM130's Photo SFM130 Posts: 483
9/21/09 7:53 A

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Keep looking for a doctor who cares about their profession and who has a passion for it. Those are the doctors who will be attentive to their patients and take the time to explain everything. I'm so sorry you're going through this. It's hard enough having to deal with our condition as well as the crap that goes along with it. As someone else said, look for an endocrinologist if you haven't already. PCOS and other related conditions are their specialty.

In the meantime, keep your chin up and eventually things will get better. We're all here for you!

"Courage does not always roar. Sometimes it's the quiet voice at the end of the day saying, 'I will try again tomorrow.'" ~Maryanne Radanbacher

When the world says, "Give up," Hope whispers, "Try it one more time." ~Author Unknown

"Perseverance is failing 19 times and succeeding the 2oth." --Julie Andrews

"God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference" ~ Reinhold Niebuhr


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SWEETSUNSHINE72's Photo SWEETSUNSHINE72 Posts: 533
9/20/09 4:01 P

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Mirena, like all forms of hormonal BC, only covers up some of the symptoms, but does not actually treat PCOS. In fact, using any form of BC long-term has been connected to worsening metabolic issues!

Mirena does use a lower dosage of progesterone, though - from what I understand, because it's physically located close to the ovaries it doesn't have to travel through the whole body, so it can be effective with less medication. I'm not sure if that would make a difference with the metabolic issues. I know the Depo-Provera shot is NOT good for us Cysters, and tends to really send our systems for a loop! I'm not sure how Mirena would do for PCOS.

I, personally, am not a big fan of BC's. I've seen enough research to not really trust them. Also, the whole idea of using hormones to control women's cycles came about before the FDA was created, so a lot of it was "grandfathered in" and there wasn't a lot of research done before it was heavily promoted to the public. For me, I have tried them a few times, but my body has just totally rejected BC's completely! I can't even stand the smell of them! lol

I say, listen to your body. If you feel strongly that something just isn't right for you - it probably isn't! One thing is clear with PCOS - you HAVE to become your own best advocate!

Take care, and I do hope you find a way to make things better!


DipMT, Hon (ACTM)
(Diploma in Massage Therapy, with Honours from the Atlantic College of Therapeutic Massage)


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HEYWISHER's Photo HEYWISHER Posts: 36
9/20/09 12:10 P

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I haven't read all of the replies, but I just wanted to add a quick note. First of all, I feel for you and the horror story you've had to go through with this. :(

Secondly:
I had the Mirena for almost 3 years before I was even diagnosed with PCOS. From what I understand, and what my doctor told me last week, the Mirena does NOTHING for PCOS at all. It is simply a birth control method, nothing more. And just so you know, Mirena has been amazing for me and several of my friends who also have it. For every person who has a bad experience with it, there are probably 2 people who have it and love it.

I hope that you have some better luck with this and can find a doctor who will LISTEN to you and TALK to you in return.

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SWEETSUNSHINE72's Photo SWEETSUNSHINE72 Posts: 533
9/20/09 9:42 A

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Insulin Resistance is at the core of PCOS - over 80% of us Cysters have it, and treating the IR almost always seems to help the PCOS symptoms!

Metformin is the main medication used to treat the IR, and when combined with a low-GI-type diet and exercise, it really does do a lot to help with weight loss and re-balancing your hormones. I've known of some women, though, who had a bad reaction to Met and couldn't take it. One in particular is a woman who is also a personal trainer and fitness professional. She is able to lose weight and keep her IR and PCOS under control without it, BUT she also has to "live like a health nut" in order to do it! So, it is tough, but IT IS POSSIBLE TO MANAGE PCOS WITHOUT METFORMIN!!!

I would say that, if your regular doctor just isn't helping you, then find a qualified Naturopathic Doctor and see what they say. They usually start with diet modifications and some gentle herbs to do a cleanse, then see what needs to happen from there. ND's use a holistic approach, though, which has a MUCH better track record with chronic, whole-body conditions like diabetes and IR than "Western" medicine. It's worth a try!

Hang in there!!!! You CAN do this!!!! (((HUGS)))


DipMT, Hon (ACTM)
(Diploma in Massage Therapy, with Honours from the Atlantic College of Therapeutic Massage)


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CCSOGIRL's Photo CCSOGIRL Posts: 447
9/18/09 4:36 A

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oh downie, i'm sorry you had such an uninformed ass of a dr... i'm so thankful that my dr isn't like that... but the first gyno who made the diagnosis was!! i have been told many many times that the only way i'm getting pregnant is with fertility drugs or in-vitro... i haven't had my period in a long time, and only had it off and on since i was 17. i too, feel like losing weight is impossible -- but i can do it-- i just have to work twice as hard as "everyone else"... ie: people without pcos or metabolic syndrome. my doc told me no way would she let me use the mirena or any drug containing just progesterone, so no depo provera either. darling, i hope since this post things have gotten a little better for you. and btw-- you look fab in your wedding dress!!

live love laugh! kiss slowly and forgive quickly.


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~KRISTEL~'s Photo ~KRISTEL~ Posts: 107
9/17/09 11:20 A

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Just keep in mind that the people we consider most successful had many more failed attempts than they did successes...We're no different. We won't get it right all of the time, but as long as you don't give up on yourself you will be a success!


. .*) .*Kristel
(. (.''



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DOWNIE1986's Photo DOWNIE1986 Posts: 12
9/15/09 3:54 A

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Thank you all so much for your kind words of encouragement, it feels great to know I'm not the only one going through all of this :)

The world seems against me most of the time but I'm determined to at least try and beat the system! Success is all in the execution I guess!

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~KRISTEL~'s Photo ~KRISTEL~ Posts: 107
9/14/09 10:54 P

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I agree with what's been said so far: Keep trying to find a new doc; Track your food/exercise daily; Don't give up!

Basically what my doctor has me doing is cutting out anything that's fried, white (flour, rice, etc), or processed (peanut butter, chocolate). With PCOS I have insulin resistance so he basically advised me to eat like I'm diabetic, I also have a slightly elevated cholesterol (bad one). I know that you can do this, and I pray for you and your husband that you find the right doctor soon.


. .*) .*Kristel
(. (.''



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TRYINAGAIN3's Photo TRYINAGAIN3 Posts: 1,597
9/14/09 9:07 P

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My doctor didn't want to listen to me at first either. I said PCOS and she pretty much just rolled her eyes like I was coming in to do her job. She didn't give me time to explain about other doctors all the hormones problems etc.. I didn't give up though I stayed in that office talking in circles with her until I finally got her to take a closer look at my medical file. It's crazy how doctors walk in tell you what they want you to do.. then walk right back out. I've been through that way to many times to just take what she said and walk back out. You have to let them know everything you've had done ..what worked what didn't. You know your body better than they do. PCOS isn't the same for everyone so it's up to us to find what works.
I agree with the person that said to take a journal of food you've eaten and your weight weekly to show them what your doing and what isn't working. Make sure they know you want a baby. Sometimes it takes a few different doctors to find one that will listen and help you.




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LALEWIS72's Photo LALEWIS72 Posts: 70
9/14/09 8:54 P

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I feel for you. It's so hard when you are talking to the docs and they don't seem to hear you. Hang in there!

emoticon

Trust the journey
Everything happens as it should
Don't regret the past
It got you here
(unknown)

Never, never, never give up. (Winston Churchill)


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AMY_P1's Photo AMY_P1 Posts: 405
9/14/09 3:00 P

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I feel your frustration. I went to several doctors over a course of several years before I was even diagnosed correctly. Seems like many doctors just aren't educated enough to be helpful. My OBG that I have now is helpful but I found the most help from my accupuncture theropist. She's been great and actually got me losing weight and then finally pregnant. Of course asking lots of questions in consoltations and trying to get referals is best way to find someone to guide you through all this PCOS crap.

The future you see is the future you get.
~Robert G Allen


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CECE0330's Photo CECE0330 Posts: 3,442
9/14/09 12:33 P

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One thing that might help is to track for a month or two-be honest about what you are eating, and what exercise you are getting. Then if you have to, print the whole mess out, and drag it into your Dr's office. Tell him/her: Look-I weighed "x" on this date. This is EXACTLY what i have eaten and how much I have exercised, and I still weigh "x" two months later. It's so easy for people to *think* they are doing the right thing for diet/exercise that i think sometimes Drs write them off as not trying that hard, or something. But in the end, Drs diagnose problems based on data, so take that to him and SHOW him that you are trying, it isn't working, and you need help.




"Strong is the new Skinny"

SW: 212
GW: 142
CW: 150.4 :( Oops


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KAREBEAR38 Posts: 176
9/14/09 11:02 A

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I definitely feel for you and can relate. I hate drs. like that. Don't give up, just keep trying to find a good one. It's hard because then you have to go through issues all over again, but worth it. I'm going to switch drs too.

I keep exercising and trying to eat right, I'm finally using the nutrition tracker everyday. I'm still not losing fast or at all it seems. Keep trying and doing what's right, because when you find the right dr, you'll have good habits.

Good luck and know you are not alone.


PTPHELAN's Photo PTPHELAN Posts: 1,163
9/14/09 9:52 A

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My heart goes out to you. PCOS can be so frustrating! Don't give up on finding a Dr. that will help you. Have you seen an endocrinologist? They normally will give you the most help. How long have you had the Mirena in? I know that is supposed to help with bleeding, but if you want to get pregnant, it's gotta go. And like you said the side effects are the exact things you want to avoid.

I know how you feel about eating right and exercising and not losing any weight. I'm living it every day too. Right now I'm trying to do it with out medication, but think I might have to give in to save my sanity. It is so aggrevating!

So, hang in there and know that you are not alone.

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DOWNIE1986's Photo DOWNIE1986 Posts: 12
9/14/09 7:55 A

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I don't even know where to begin with my story!

I am 23 and I have been married since November last year! I was diagnosed with PCOS last summer after battling with my weight, and hirstuism,(sp) since my teen years, and not having a period for 2 years.

My doctor gave me no information about PCOS or what it was but told me I had to lose weight but before they would help me with meds or anything I'd have to lose 3 stone on my own.

The day before my wedding I got my period and bled constantly until August 12th 2009! I ended up having a Hysteroscopy, Polypectomy and a D&C and then having the Mirena Coil fitted!

I've read horror storys all over the net about Mirena but decided to give it ago, I expressed my concerns to my GP who basically laughed and said not to be so silly.

I never wanted the Coil in the first place, not once has anyone taken the time to explain it to me or how it will help PCOS, in the booklet they gave me some of the most common side effects are cysts on ovaries, hirstuism,acne and weight gain! I suffer with all of these symptoms anyway with the PCOS surely I should be having things that prevent the symptoms rather than cause them.

I feel like I'm fighting a losing battle and no matter how hard I try to exercise and eat right I am not losing any weight!

My husband and I are desperate for a baby but I am getting no help whatsoever from anywhere, I've changed my doc twice but it seems to be the mentality of the docs here in the UK....

I'm fed up with being told to just lose weight... I have no confidence, or self esteem. I am a broken woman!

Sorry for the long post, but there is so much I want to say :'(

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