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Polycystic Ovary Syndrome (PCOS) Message Board
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Old 12-14-2005, 02:33 AM   #1
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infa5058 HB User
PCOS not curable, only maintainable...

I was diagnosed with PCOS in 2000 and went on metformin, spiro and ortho tri cyclen. within a few months my skin was clear and my facial hair was significantly reduced. I thought I could come off my meds but my doctor told me that if I lost weight, I could come off my meds. Since then I have lost over 80lbs and last december was taken off of spiro. This past july I moved to London from NY and decided to come off my meds altogether. Within 2 months ALL of my symptoms came back with a vengence!! My doctor here told me that PCOS is not curable and can only be maintained - usually with minimal meds like what I was on in June (1000mg of Metformin and BCP).

Now I am back on metformin, aldactone but in the UK they don't have Ortho Tri Cyclen so I have tried 2 different types of BCP (Cilest and Yasmin) which have not helped. I went to see a derm and she said that since PCOS is hormonal, acne is therefore not curable and once you get off the meds that help with the acne, it will come back (as it did for me). She said the only way to permanantly get rid of acne is via Accutane.

Does anyone have any experience with Accutane? I have heard some bad things about it and am a bit nervous going down that route. I am okay with having to take metformin for the rest of my life but at some point I am going to want to try to have children and will need to come off of BCP and spiro (I am 33). I don't want to spend that time with a face full of acne as it causes me to get so depressed.

Any help would be appreciated..

 
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Old 12-14-2005, 07:35 AM   #2
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lexla HB User
Re: PCOS not curable, only maintainable...

hey, im very similar to you! im in my early 20's, found out i had PCOS in my college health office last year. ugh lol. i had all the symptoms for years but was never taught about it in health class, so i never knew....acne, irregular periods, painful periods...etc. Finally i was put on orthotricyclen ( after a horrendous trial of the LO version) and accutane....i recommend it 100%. i was so depressed before with the acne and everything, but now im in my 3rd month and am so happy with the results, and its not even done for another 3 months My side effects have only been slight back pain and a few breakouts in my first 2 months. Now i see a large difference, less oil, and am much happier! i really recommend it as i know that having tried all other meds for acne before this is whats helped me the most and the quickest, with the good chance ( i hope !) that it will take it away forever. I really recommend trying it, it's been great for so many people, including myself. good luck

 
Old 12-14-2005, 09:14 PM   #3
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Blondie_21 HB User
Re: PCOS not curable, only maintainable...

hey.... I quickly googled Accutane side effects, heres one of the links..

[url]http://www.health-longevity-magazine.com/accutane-side-effects.html[/url]

I was thinking about that too.... but I here its very harmful for your body.... so im kinda of scared of it making problems worse

Last edited by Blondie_21; 12-14-2005 at 09:17 PM.

 
Old 12-15-2005, 02:53 AM   #4
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Re: PCOS not curable, only maintainable...

Thanks Lexla. I am glad you have had good results with accutane. I am afraid of the long term side effects but having acne makes me so depressed that I am kinda leaning towards going through with it..

Let me know how the rest of your treatment goes..

 
Old 12-15-2005, 03:49 AM   #5
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Re: PCOS not curable, only maintainable...

Thanks for this link. I have done a bit of research myself and it looks pretty scary! My derm here says that most of these symptoms only occur when treating with high dosage. She said that for PCOS she would just have me on the minimal dosage/duration. I wouldn't be as nervous if I could be sure that if the symptoms were bad enough I could just stop the accutane and it would go away. But am not sure what the long term effects are.....

Let me know if you decide to go through with it. At the moment I am leaning towards yes but am not sure. My derm gave me a topical version of accutane (combined with an antibiotic) and if this works I may just decide to stick to the topical version even if it is for the rest of my life

 
Old 12-18-2005, 01:37 PM   #6
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SilentSuffering HB User
Re: PCOS not curable, only maintainable...

Do you HAVE to go on several medications?

I haven't had my period in a year, so right now I'm mostly concerned with getting it back and NOT getting cancer. My new gyno gave me hormones to bring on my period, then prescribed Yasmin for me. She said Yasmin has been very successful among PCOS sufferers, and is good for getting rid of my acne.

I know that while I was on the pill for 5 years (which ended last year) I had no acne problems, I weighed less than I do now, and I didn't have as much hair on my face.

I don't really want to go on Metformin (sp?) or whatever it's called. My friend is on it and is miserable. She doesn't lose or gain weight; she just stays heavy. She's also upset that she can't even have a glass of wine once in a while.

I don't want to be on a bunch of medications! Can't I just treat this with the birth control pills?

 
Old 12-21-2005, 07:58 PM   #7
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Lalalane HB User
Re: PCOS not curable, only maintainable...

Well I was diagnosed with PCOS for about a year now definately. I was on all the meds as well, and I stopped taking them in July. I could not handle it and I too dont plan to be on pills the rest of my life. When i was on the pills it didnt seem to help anyway. I only had my period once this year and none of the pills helped me to regulate it either. So I have no idea what to do with myself, and I am at the point where I want to have children as well.
In my opinion, the metformin is really only used to control your sugar levels and so they claim to help you ovulate. For me it did not do anything but control my sugar levels which can also be controlled by eating correctly. I just feel like if I find the right doctor who will put me on like Provera pills, so that my menstrual will come, I will feel alot better.

 
Old 12-21-2005, 11:25 PM   #8
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hayleigh HB User
Re: PCOS not curable, only maintainable...

Hi, I also live in the U.K. I was diagnosed with pcos in jan this year. I have like you been put on metformin. For my Facial hair I was given a new cream in Sept this year, which not many people have heard of in the u.k. It is called Vaniqa Eflomithine. You are expected to see results within 2 months. I can say that i have seen results not only in my facial hair, but of the clearing up of my acne. The only downfall is you have to continuosly use it. And it is to be applied twice a day. If you miss a dose that is o.k as long as it is not longer than a six week period as the hair and acne do come back.
Unfortunately im still trying to find a succesful way to lose my weight. I cannot seem to shift any weight at all and that is the bit that depresses me. I have had 2 children and both times came home from hospital after there births in a size 10 trousers. my youngest is now 4 yrs old and that is the bit that upsets me being able to lose the weight after child birth but now rocketing to a size 16. Also i was told i wouldn't be able to have anymore children, but i have for friends who all have pcos and all 4 went on to succesfully have children, so i dont think this side of pcos is that much to worry about. But i would be grateful if some one has any tips on weight loss.

 
Old 12-22-2005, 09:40 AM   #9
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Re: PCOS not curable, only maintainable...

Quote:
Originally Posted by hayleigh
Unfortunately im still trying to find a succesful way to lose my weight... But i would be grateful if some one has any tips on weight loss.
I'm going to try NutriSystem in about a week. They've already sent me my month's worth of food, so I just have to psych myself up enough to try it. They've put me on a 1,200 calorie diet, so I'm a bit nervous, considering I consume about 3,000 calories per day. I'm thinking about starting it over this holiday weekend so I can adjust a little bit before I go back to work. I just KNOW I'm going to be downright cranky because the portions are SO small! They're really very small portions...

I am also a size 16. I weigh 230 lbs. and I'm 5'4" tall. I haven't been a size 10 since high school.

Last edited by SilentSuffering; 12-22-2005 at 09:43 AM.

 
Old 12-22-2005, 09:54 AM   #10
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Re: PCOS not curable, only maintainable...

Quote:
Originally Posted by Lalalane
...I too don't plan to be on pills the rest of my life. When I was on the pills they didn't seem to help anyway. I only had my period once this year and none of the pills helped to regulate it either...
...I just feel like if I find the right doctor who will put me on like Provera pills so that my menstrual will come, I will feel a lot better.
To greatly reduce your risk of cancer, you really only need to have your period about once per year. Any more than that is (from what I hear) unnecessary.

Pills worked for me, so I don't know what to tell you. I was on Ortho TriCyclen for about 4 years, then switched to Ortho TriCyclen Lo for a year before my primary care physician took me off the pill. My new gyno is starting me on Yasmin, as soon as my period comes. (I haven't had it in about 8 months, so I took a cycle of Provera a few days ago. I took my last pill on Tuesday night, so I'm just waiting - impatiently - for it to come.)

My Gyn said Yasmin has been very successful for those with PCOS. Maybe you should ask for it? Or you could try Seasonale, so you could have your period 4 times per year.

As far as conceiving goes, I don't know what to tell you. Kids are not for me, so that's not something I've asked my doctor about.

 
Old 12-22-2005, 06:47 PM   #11
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Re: PCOS not curable, only maintainable...

Oh that is the other thing..... I have been on Yasmin before. At first it started out okay. Then after awhile I started gaining weight from it, and I began to have a lot of breast tenderness, and a low sex drive. It was weird because in the beginning it was wonderful and then after about a month or two forget it. I stopped taking birth control pills because I became scared of the fact that some people I know who took it for awhile, and is trying to get pregnant now, are having a very hard time. Also when the doctors put me on Metformin in January, my menstrual totally stopped even while I was on Birth control. I didnt have a problem with the birth control pills making my menstrual come until I started the metformin, but the doctors didnt believe that either. Also I was always told that as long as your period comes 4x a year that you are okay. One time a year is not enough cleaning out for your body. I mean I get bloated and everything, so imagine being bloated for 11 months out of 12. I don't know what is going on, except the fact that I want a doctor to give me some provera pills. I had all kind of test done and they didnt come up with any reason why my period is not coming. I have no cyst at all. So the doctors keep trying to make up excuses. Like for starters after all the test was done, and nothing was found, my GYN tried to say that it was because I am overweight. She never even realized that I lost 30lbs since she even diagnosed me with PCOS. It was really apparent that she did not know why I was not getting my menstrual and why the metformin was not working. the only thing she kept saying was well the metformin helps people to ovulate. I tried to explain well it does not seem to be working for me. After a few months of going to her and every month I kept telling her I didnt get my period yet, and every month she asking me if I am pregnant and making me take a HPT test, I got fustrated and stopped going to her all together. So now I am looking for a different GYN. I actually found one but my appt is not until February. I will have see what she says.

Last edited by Lalalane; 12-22-2005 at 07:01 PM.

 
Old 12-23-2005, 02:45 PM   #12
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SilentSuffering HB User
Re: PCOS not curable, only maintainable...

Quote:
Originally Posted by Lalalane
... I have been on Yasmin before. At first it started out okay. Then after awhile I started gaining weight from it, and I began to have a lot of breast tenderness, and a low sex drive...
Also I was always told that as long as your period comes 4x a year that you are okay. One time a year is not enough cleaning out for your body.
Now I really don't know what to tell you, lol. My gyno just told me that if you don't have it at least once per year, you greatly increase your risk of cancer, so I know once per year is a minimum. Any articles I've read on requirements I can't post here or even direct you to them - SIGH - because we're not allowed to do that.

Well, I did mention Seasonale. Did you think about going on that? You'll get your period 4x per year. I don't know how many brands or types of pill you've been on, so...

And now you've got me all worried about going on Yasmin. I don't want to get fatter or lose my sex drive - again, that is.

Since I don't want kids, maybe I should just volunteer to have my ovaries removed or something. I don't want to go through this crap for the rest of my life!

 
Old 12-23-2005, 03:41 PM   #13
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Lalalane HB User
Re: PCOS not curable, only maintainable...

I would encourage you to try it and not take out your ovaries or have them removed!lol I mean everyone has a different body. your body might adapt quite well to it. My body is known to react differently than most people anyway. Try it though!

 
Old 12-24-2005, 07:19 PM   #14
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SilentSuffering HB User
Re: PCOS not curable, only maintainable...

Quote:
Originally Posted by Lalalane
I would encourage you to try it and not take out your ovaries or have them removed!
I know, I know. I'm actually set to try it, I'm just STILL waiting for my period! My last Provera pill was on Tuesday, and I still haven't seen anything, not even spotting.

I still say it might be worth considering, though. I might be the first voluntary hysterectomy of a non-transsexual!

:::wink:::

 
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