Lets Fight Back Girls !!!

Jenfra · 03-17-2006, 10:29 PM

For me losing weight is a VERY big issue. I was always skinny growing up and never had to deal with weight issues, though I did have a bout with anorexia from 19 to about 22 years of age. One thing I constantly think about is the fact that anorexia might have played a part in my condition. Why was it that after about a year I started exibiting signs of PCOS ? Could the anorexia have done some damage, and possibly taken me down the road to PCOS ? When I think back, I find SO many strange things that happened BEFORE being diagnosed. I think about this almost every day and I won't stop researching, reading, and getting as much info as I can to figure all this out.

I am in search of the right alternative doctor, but I am also in search as to "why" does this happen in the first darn place !?!
Has there ever been a study where women were asked to describe what their life was like BEFORE being diagnosed ? I mean you'd figure that all these DOCTORS would know what to tell you when asking them why it is happening to you and not to your next door neighbor who has clear skin, perfect body, and popping kids out faster than a speeding bullet. Or someone who works in your office, or whomever, you get my point.
Why do some women get cysts but don't have PCOS, and some women have PCOS don't have cysts ???
I may not be healed now and I may not have all the answers, but as GOD IS MY WITNESS, I will not rest until this condition is solved and known by everyone in the world and every one of us be treated with some friggin' respect !!!!!!!!!!!!!!

We are not just "some fat chick" who can't lose weight.
This is an epidemic and we are being bombarded by those who wish to scam us with their so-called miracle treatments, and by those doctors who still believe that women can heal using synthetic medications. (I may get alot of responses from this one, but it had to be said).
Synthetic medications may help (short term) but have you asked yourself what the heck you'll be doing LONG TERM !?!? You can't possibly stay on meds for the rest of your life.
I have tried ALL PCOS meds precribed by conventional doctors and ALL of them have given me nothing but grief.
I will post again once I get some responses from this post, otherwise I'll make this a novel.
Let's get on this GIRLS, let's try to kick this PCOS in the butt for good and not brush it under the carpet.

CPerry1982 · 03-18-2006, 12:02 AM

OH my freakin god I agree with you. One thing that really pisses me off is how some people take it as a joke. For example, I used to talk to this guy online, I was going to hook up with him, I told him about my condition and he said "oh well we can both shave in the morning" It really offended me. It's not funny, and no I can't just wave a magic freakin wand and make it go away. That's what my OBGYN told me was to lose weight. Well, it's easier said then done with PCOS. I have been losing weight though everyone that's seen me has said "oh my god you are shrinking!" but its kind of a yo-yo thing cause I think I might have gained some weight. But yeah, I agree with you I'm sick and tired of how stupid and misinformed people are you are right we need to stand up!

ABumpyGal · 03-18-2006, 01:44 AM

I actually agree with you! It's pitiful, IMHO, how little research is done in the how's and why's of this syndrome. I feel that if they solved those issues perhaps they could solve most, if not all, of PCOS' attendant problems. The infertility, the weight, the hirsutism, the insulin resistance, and on and on.

I know in my case it's genetic, or that an awful lot of the women in my paternal side have had it as far back as people can remember. I'm talking about women born in the late 1700s. I, too, was anorexic, but in my case the PCOS came first. It brought on a very sudden and horrific puberty for me and I reacted by trying to "starve" myself back into childhood (subconsciously, of course! I only realized that bit later). It's all very confusing as so little research seems to be done in this area.

Some conditions, at this time, do need pharmaceuticals though, IMHO. I don't like taking them myself, and avoid them if possible, yet I still have conditions that can't really be treated any other way with what science knows at this point. Like the Endometriosis. Either I take something to keep my estrogen quite low, if not be put into outright artificial menopause, or they will have to constantly operate on me to remove it as it regrows. Each time they enter one's abdominal cavity by surgery you run the risk of adhesions, or painful bands of inner scar tissue that can literally bind your organs together. So pharmaceuticals it must be, for now. I really wish there was another way, though!

I like your spirit!

Dana

Jenfra · 03-18-2006, 02:47 AM

I'm glad some people agree with me, and you are both right in your concerns.

I mean, really, this is getting ridiculous that we have to beg doctors to see us and further examine us. To direct us to the right treatment, and get the proper testing, the fact that there is no "STANDARD" testing for PCOS.
And you want to get even more angry.......you know when you search for health concerns on any website where they present you with all different types of ailments, from Acne to Thyroid problems, POLYCYSTIC OVARIAN SYNDROME is always no where to be found under the letter P !! That may be a small issue, but to me it means we just don't count enough to be recognized!!

If the entire world knows that a certain pecentage of women suffer with this endocrine disorder, why the hell don't we get proper recognition as someone else who has hepatitis, or cancer, or lupus.......I don't understand.
There are seminars and message boards and information on the website, it's not like we have NO information to guide us, but it is all a mish-mash of info intented only to make us more confused than ever.
One person may say, "Oh my God, I was cured by a Chinese Herbalist!" Another may say, "Oh my God, I had success using Clomid and baby asprin!" Another may say, "Oh my God, Vitex worked for me!" What is the problem you say? Well, it only confuses the newly diagnosed even more and makes for a DANGEROUS combination if one decided to take all medications together and think, well I'll just heal that much faster if it worked for all these people! Some innocent people go online and read from there what to do to treat this problem........just think, poor girls who are trying just to simply get help and no doctor can truly help them.
Has anyone EVER suggested there could also be a problem with parasites in the body? Or food allergies, candida, and so much more? These are things that can make PCOS much WORSE and a conventional doctor will NEVER tell you these things.

We have a serious problem here and I am concerned about where women like us are going to end up. There are HEALTH WARNINGS issued for Diane-35 (birth control pill) and dotors are still prescribing them, and women are still asking for them ! I can provide you with a link about the warning, and the women who have died from them.
These need to be at the forefront here, they need to air their dirty laundry and maybe it can save other women from making the same mistakes I made.

Which is why today I am suffering terribly, because of all the problems that synthetic medications have caused me.
I know that others may want to fight me on this, and totally disagree with my views, but last time I checked there was freedom of speech and I intend to speak my mind until I can save another woman with PCOS from making the same mistakes I made.

StarMaiden · 03-18-2006, 03:42 AM

Quote:

Originally Posted by Jenfra

I know that others may want to fight me on this, and totally disagree with my views, but last time I checked there was freedom of speech and I intend to speak my mind until I can save another woman with PCOS from making the same mistakes I made.

I don't want to fight you, and I agree with many of your views in your posts. Especially about awareness, and about this being a possibility that docs need to consider and take more seriously when patients present. And damn right you are about there needing to be a more consistent and organized approach to the disease. And respect! Couple things I want to say.

1. Why does ANY disease not get conquered, or get enough attention. It's not like PCOS is so special curse that is any different than someone who has to deal with any other chronic disease. We are human animals. Things go wrong with out bodies. That's the "why" of disease, and PCOS isn't all that different. It's not a special case compared to any human who has a difficult disease to deal with. Given the range of icky life altering diseases I could have been born with, I think I'll take this one. It's manageable, and it's not the end of my world.

2. It does appear that scientists are getting to the bottom of the origin of this syndrome. You're howling about how little attention this gets and how few the treatments are. Do you have any idea how lucky you are to be living RIGHT NOW when there is so much that CAN be done? Compared to when I was a child and was diagnosed at age seven? Sure in 25 years, it will be better and maybe even solved. But things are looking pretty good these days for PCOS patients.

2. Synthetic medicines. Honestly, this syn/non-syn thing really makes me laugh. There are organic herbal substances that can kill you. And there are benign and perfectly effectively medications that have saved millions of lives and made those lives far easier to live. Synthetic medicines are not the enemy here. And in terms of PCOS, it's been around since long before synthetic medicines were developed. This is a red herring. There are medications and treatments from the spectrum of medicine that will help us out here.

4. I can't possibly stay on synthetic meds the rest of my life? Uh, why not? Lot of people do, for a lot of reasons. It's one reason why a lot of people are alive who otherwise wouldn't be.

I'm not going to criticize your energy and your attitude, though. They are amazing and I appreciate them!

Jenfra · 03-18-2006, 04:52 AM

First off, I respect your views, and I appreciate your comments.

You said, Given the range of icky life altering diseases I could have been born with, I think I'll take this one. It's manageable, and it's not the end of my world.
That is so true, and there are diseases out there that are much worse, but why do we just have to pu up with ANYTHING and just say, "hey, that's life, it could be worse." No, this is not life, and there are some women who suffer terribly who have PCOS. I've been in and out of hospitals more times than I can remember and that my friend is NO WAY to live. No one has to play with the cards they've been dealt. We are here for a reason, to fight and conquer.
Look at Michael J.Fox, he is battling Parkinson's and fighting for justice. People are fighting for stem cell research.......everyone has there OWN battle to deal with. If we all had a nonchalant attitude and said, hey there is much worse, then nothing will ever get solved!
You said, Do you have any idea how lucky you are to be living RIGHT NOW when there is so much that CAN be done? Compared to when I was a child and was diagnosed at age seven? Sure in 25 years, it will be better and maybe even solved. But things are looking pretty good these days for PCOS patients.
I am lucky to be living, yes, but what kind of life am I having?? Not much of one. I haven't done any of the things I love do in over 8 years now. I have been living, and breathing, and walking and talking, but I have been very sick and exhausted with this that the quality of my life is one that quite frankly sometimes I feel isn't worth sitcking around for. I have battled my own demons concerning suicide and have overcome them at times and other times come close to making the wrong decision, but living right now means living healthy and happy, and that doesn't mean having a fancy car, or house, or all the money in the world. If you say that there is SO much that can be done, who the heck is putting all this mish-mashed information together and getting the ball moving??? I'm not going to wait 25 YEARS......quite honestly I may not even make it, that's how bad my health has become.
You stated, There are organic herbal substances that can kill you. And there are benign and perfectly effectively medications that have saved millions of lives and made those lives far easier to live. Synthetic medicines are not the enemy here. And in terms of PCOS, it's been around since long before synthetic medicines were developed. This is a red herring. There are medications and treatments from the spectrum of medicine that will help us out here.
I am really sorry, and I am not in any way trying to be rude, you seem like a nice person, but these medications are not helping women, if you scroll through this board and see just how many women complain that they've been on Yasmin, or Metformin, or the like and after a certain amount of time these meds STOP working. Then when you get off in search of other meds you will have to deal with the now current porblems that the other meds are giving you. When I stopped DIANE- my hair was falling out like crazy.
Do you have any clue how medications are being sold in doctors offices? These pill-pushing salesmen walk into their office with briefcase in hand and fake personalites to go along with them, and tell them that they the next best treatment for a disease. The doctor takes their advice, (as they make money too) and off to the races they go, giving meds to people. You should just TRY to listen to me on this one, if you never do anything else in your life, have a look and research what I'm saying, you'll be glad you did.
Do you have any idea just how much money Pharmaceutical Companies make ?!?!
People may be alive on meds, but if you check this out, they also seem to die younger. Meds are not the answer, they are just shoving all your problems under the carpet. And when it's time to clean the carpet, you find more dust (problems) then you originally started out with. You now have to treat the symptoms caused by the pills with other pills.........blah.......blah.........blah........ ....

But don't be offended by my words, just wanting to inform women of my discoveries and advise them to research EVERYTHING before putting it in their bodies.
We only live once, and I don't want to waste my time on this earth thinking that we don't have it that bad and MAYBE someday things will get resolved.
I want to fight now and maybe sooner, rather than later we can find the answers all of us so desperately need.
PEACE TO ALL CYSTERS.

CPerry1982 · 03-18-2006, 06:33 AM

Does anyone realize how painful it is to walk around and see all these women who can pop out a kid with no questions asked? That really hurts. It makes me feel like I failed in life, my sister has 2 boys and she never had this problem. Granted yes I am envious Hell my job doesn't even give me insurance. I'm part time and I have to wait A YEAR to get checked out. It sucks so much I know that we are all cysters in this but doesn't it make you ask the question of "why me?"

StarMaiden · 03-18-2006, 08:32 AM

Jenfra, yep, it sounds like your PCOS has been way disabling, and I'm sorry for that! Yep, I know that since it's a spectrum, that some people have it easier than others with this syndrome. It has altered my life, but it hasn't disabled my life. I'm sorry it has hit you so badly.

My larger point that I wanted to make, has something to do with perspective. So many of us here are finding out about our PCOS in our teens and twenties. That's a time when we've finally hit adulthood, and our expectations are that we're going to be healthy, we're going to be in control of our lives, and that we'll achieve pretty much anything we want. It's not a time in our lives when we want to compromise particulary.

It's a rude and nasty shock to have to deal with a syndrome that can so suddenly take away health, our looks, our dreams. Being older (I'm 46) and watching friends, family, myself, co-workers go through life, you begin to realize that NO ONE gets through life feeling as good or looking as good, or living as happily, as we expected to when we first reach adulthood. Crap happens. Awful things happen to most of us at some point, and sometimes that includes illness. Usually, chronic illness is something that hits most of us later, not in our teens and twenties, so yes, PCOS is an ugly trickstser in that regard.

And living wisely means figuring out how to continue to live fully while accepting and integrating the bad parts of life. Yes, this also means fighting for progress! Never think that way. But it doesn't mean taking an attitude that expresses that this horrible unfair thing has happened to me, therefore my life isn't worth living. That woman next door who's popping out babies and enjoying a clear complexion may have awful issues we don't know about, and if she doesn't yet, she WILL at some point. A charmed life is exactly that...charmed. A perfect life is not a normal one, and few of us will be charmed. Strikes me that's the attitude Mr. Fox is showing as he goes through his disease. He doesn't let it define him.

So what I'm saying, is the "why me" isn't that productive an emotion. I have certainly felt the "why me" a lot in my life. Earlier, it was sadness at not having a family. Right now, it's the panic-inducing everyday problem of how to deal with the fact that I need replacement hair. But we have to leave "why me" behind and keep living. "Why me" is part of grieveing, which is completely appropriate, but to be healthy you move beyond it. "Why" is a productive question. It drives the energy you are feeling to make things better and learn more and fix this problem. I wouldn't wish that away for a minute. Keep asking "why."

As for medicine, yep, I'm completely aware of the pharmaceutical industry and how it works, and the politics and abuses of this system are another topic for consideration. My remarks about medicine go beyond those that treat PCOS. Spend some time learning how people lived before anti-biotics, before medications to treat blood pressure issues, medications to treat the emotional/mental spectrum. Before chemotherapy. People live LONGER, not shorter. I don't think you'd want to be around in the pre-antibiotic era.

I don't want you to lie down and be defeated by PCOS, even though I'm learning that your struggle seems to be more disabling than typical. I do want us all to get to the bottom of the problem. But I'm not tossing away my meds ANY time soon. They are helping and they continue to help.

ABumpyGal · 03-18-2006, 10:29 AM

Quote:

Originally Posted by StarMaiden

So what I'm saying, is the "why me" isn't that productive an emotion. I have certainly felt the "why me" a lot in my life. Earlier, it was sadness at not having a family. Right now, it's the panic-inducing everyday problem of how to deal with the fact that I need replacement hair. But we have to leave "why me" behind and keep living. "Why me" is part of grieveing, which is completely appropriate, but to be healthy you move beyond it. "Why" is a productive question. It drives the energy you are feeling to make things better and learn more and fix this problem. I wouldn't wish that away for a minute. Keep asking "why."

Yes! See, at my stage in life, this is more where I am. I've known I've had this since I was 12, long before doctors confirmed it. That's 21 years to get used to the idea of many aspects of this syndrome, grieve, and "move on" so to speak. I do, however, like a four year old child, want to know, "Why?", about everything. PCOS research and knowledge has actually come a long way since I was diagnosed in 1989, but I'm still dying to know "Why?"! Not for me, but for future generations of girls. So they don't all have to suffer just as acutely.

The only thing that the hormonal imbalances of PCOS have brought me that causes me any amount of real angst is this horrid skin disease, Hidradenitis Suppurativa. I've had that since I was 12, too, so there's no more "why me" there. Just frustration and anger. There isn't even a real treatment for this one, especially once it's become advanced, as mine certainly has. Working outside the home is just a dream for me right now, as I must take three medications, two being oxycodone and morphine, just to move about the house and make an occasional excursion. That's not a whine, it's just to give people a gauge of what I'm talking about here. These are no mere pimples! They're literally eating me alive every moment of the day, and from knees to neck. And even then, as you said, I know I'm lucky as it's not normally fatal. When I'm in pain and in danger of the "why me"s I think of the tiny children suffering from cancer, who don't understand, and certainly don't deserve their fate. I'm lucky, actually.

If I could somehow fix my hormonal imbalance, I could possibly fix the Hidradenitis Suppurativa without knocking half of my immune system out. Which is currently the only experimental treatment available. I still may do that, but it's irreversible and I'll have absolutely no resistance to TB, which is on the rise in this country. Feel my dilemma!

And believe me, I have nothing personal against pharmaceuticals. I wouldn't be here a dozen times over without them! I'd be swinging from the trees like a monkey without them or suicidally depressed, as I'm Bipolar. I take six a day right now, soon to be seven once I add my new BCP. I would just rather not take them if I don't have to. I'd rather not take even an herbal therapy if I don't have to. Or anything with the possibility of more side effects. That's my main issue at this juncture, as all of my drugs are strong ones and carry some doozies. I'm talking suddenly falling down, taking away my ability to drive (although I might be getting that back! Yay!), and even making talking or writing a simple, coherent sentence close to impossible. I'm scared to death what the next drug might bring! I have a full plate dealing with what I'm dealing with right now, although I hope it will get better as time goes on.

My main issue, and I fear I'll get flamed to hell and back for it, is that this is so often seen and researched as a "Reproductive Disorder" and not the root "Endocrine Disorder" they've found it to be. Stay with me!! I really do feel that if they solved the root issues the reproductive problems would be more effectively and successfully treated. To me it's a bit like putting the cart before the horse.

But no, I better be on certain pharmaceuticals the rest of my life, unless they come up with some better treatments, or a cure, for both Bipolar and Hidradenitis Suppurativa. Try to take those life-saving meds from me and I'll bite ya! It's just sad there isn't a better way. But I want a pony, too

Dana

Jenfra · 03-18-2006, 08:16 PM

Well ladies, I'm really going to let down alot of people who believe in conventional doctors and their pill pushing ways after you read this.

Last night, I unfortunately ended up in the hospital, yet again another adventure into hell. I was about to go to sleep but I had felt kinda weird all day yesterday and couldn't get to sleep. My feet were swollen and one was burning and tingling, and I felt faint.
I decided to go to Emergency at midnight. My dad brought me and I waited for at least 2 hours before seeing the doctor. When they finally put me in a room, the doctor came about half an hour later. I told him what I was experiencing and gave him my previous blood work from the last recent visit to Emergency. My blood sugar at that time was 5.5. He checked my blood sugar by pricking my finger and this time it was 5.8.
He looked at me and said, "Nope, you don't have Diabetes". He said, heck you're blood sugar is better than mine.
I was not taken to get blood work done, no ultrasound to see if it could be something else, he presses on my stomach here and there and said, "Any pain?" I said no and he said great, fine. That was the extent of his check- up.
What if there is something wrong with my liver? What if there is something else wrong? Don't tell me that he has the superman capabilites and x-ray vision to determine that their is nothing wrong. I told him I was on Diane-35 for 2 years but got heart palpitations and I had to stop because it just wasn't working for me anymore. I told him that women with PCOS are at increased risk for Diabetes and Heart Disease and me going back on the pill wouldn't be advisable. He said, "Who told you that?" He said odds of you dying are slim. Many women are on birth control pills. CAN YOU BELIEVE THAT !!!!!!
He said I just had water retention and that was it.
I walked out of there feeling like the biggest sack of crap.
THESE are the professionals you are speaking about ???
You want to take pills from THESE people ???

I would rather someone clubbed me over the head and dragged me into a cave to be eaten by a pack of wolves.

I'm feeling somewhat stable today, but how long can that last.

I'm sure I'm missing parts of my adventure last night, but you'll have to forgive me as I'm a little doozy today. I just wanted to let you all know to be careful about what you are putting inside your bodies. Eventually medications STOP working and you'll end up ship recked like me......lost at sea......floating on a......okay, okay, you get the point.

StarMaiden · 03-19-2006, 05:51 AM

Is your foot still swollen?

And why did you got to the ER anyway? It doesn't seem to be the kind of place you would hang out if you felt a little faint and had a swollen foot. What were you thinking was wrong with you that you went to the ER in this circumstance?

Pattyannruss · 03-19-2006, 06:24 AM

Quote:

Originally Posted by Jenfra

I'm glad some people agree with me, and you are both right in your concerns.

I mean, really, this is getting ridiculous that we have to beg doctors to see us and further examine us. To direct us to the right treatment, and get the proper testing, the fact that there is no "STANDARD" testing for PCOS.
And you want to get even more angry.......you know when you search for health concerns on any website where they present you with all different types of ailments, from Acne to Thyroid problems, POLYCYSTIC OVARIAN SYNDROME is always no where to be found under the letter P !! That may be a small issue, but to me it means we just don't count enough to be recognized!!

If the entire world knows that a certain pecentage of women suffer with this endocrine disorder, why the hell don't we get proper recognition as someone else who has hepatitis, or cancer, or lupus.......I don't understand.
There are seminars and message boards and information on the website, it's not like we have NO information to guide us, but it is all a mish-mash of info intented only to make us more confused than ever.
One person may say, "Oh my God, I was cured by a Chinese Herbalist!" Another may say, "Oh my God, I had success using Clomid and baby asprin!" Another may say, "Oh my God, Vitex worked for me!" What is the problem you say? Well, it only confuses the newly diagnosed even more and makes for a DANGEROUS combination if one decided to take all medications together and think, well I'll just heal that much faster if it worked for all these people! Some innocent people go online and read from there what to do to treat this problem........just think, poor girls who are trying just to simply get help and no doctor can truly help them.
Has anyone EVER suggested there could also be a problem with parasites in the body? Or food allergies, candida, and so much more? These are things that can make PCOS much WORSE and a conventional doctor will NEVER tell you these things.

We have a serious problem here and I am concerned about where women like us are going to end up. There are HEALTH WARNINGS issued for Diane-35 (birth control pill) and dotors are still prescribing them, and women are still asking for them ! I can provide you with a link about the warning, and the women who have died from them.
These need to be at the forefront here, they need to air their dirty laundry and maybe it can save other women from making the same mistakes I made.

Which is why today I am suffering terribly, because of all the problems that synthetic medications have caused me.
I know that others may want to fight me on this, and totally disagree with my views, but last time I checked there was freedom of speech and I intend to speak my mind until I can save another woman with PCOS from making the same mistakes I made.

I feel your frustraitions.

Medical Practice is just that..PRACTICE.

I recently had seen a surgen for my carpal tunnel syndrome. He asked about diabeties and I told him I had insulin resistance not diabeties. He(like every dr I have dealt with) looked puzzled and I had to explain what it was.
When I discribed my "unusual but known symptoms of CTS" He was shocked that my GP didn't reconize and DX it. So I said to him..it is like you knowing carpel tunnel so well, but other doctors not understanding it or it's symptoms.
I told him he didn't know about insulin resistance because he doesn't deal with it. It is that way for other Dr's and his feild. You can only treat the subjects you know about.

He took a step back and said, "You are well informed and made your point clearly"

The main thing any general doctor needs to know is when women complain about this list of issues, they need to either research it and learn the treatments or know to send us to someone who specializes in the syndrome.

The probem is 98% of women with the disease are uneducatacted about it and do not know how, when or where to get help. How can you get help if you are not even given a name or even have it suggested that you have a condition that has been around from the begining of time but there is no one way to treat it. The doctors are trained to treat one to 2 ailments at a time, not 6 or more.

Each time I try to explain this, they blank out. I have been told several times that I am very complex/complicated. So I look at it that is why little is done for this condition. If you don't understand it...how can you find a treatment?

The first specialist I seen 8 years ago knew what I had but did not try to explain it because back then the only known treatment was pregnacy to change the hormones(shut down the ovaries) and I had my tubes tied the year before. He wanted me to have a reversal done!! When I said I could not do that..he stood up(before telling me what my condition was) and said "Well then, there is nothing "I" can do for "you" He then WALKED OUT OF THE ROOM! How's that for treatment options?!
I never seen him again. That is when my hell began.

I incourage any and all women to be proactive with their health care.
The issue is getting our information to the public. Young girls need to be taught in health ED about PCOS along with PMS and other "girly" subjects.
These things happen as young as 10 in some girls and as late as those of us who had their tubes tied.This disease also effects men. It is called Syndrome X

PCOS is only one name to a long list of symptoms.
There are several conditions that are either linked or conected in some way.
If you look at TUBAL LIGATION SYNDROME and SYMPTOMS OF MENAPAUSE, you will find simular links and the same symptoms.

I also have issues with BCP(Namely Yasmin). It improved many of my PCOS symptoms but it created(suspected trigger) a new and devistating condition called Endometreosis. Endo is found in 95% of women by their age of menapause. Only 5% have outward signs of it(enough to see a doctor about it). Of that 5%, only 2% get useful treatment.Of that 2%, only .05% react possitively to the know treatments. The same Hormone changes that creates the PCOS condition can amplify Endo.

Estrogen is what feeds the Endo. So women who have hormone issues that are estrogen dominant are "more likely" to developed Endo. So when BCP are intered into the mix, you can have major negitive long term problems.
**See why doctors get lost?**

Other meds that have simular effects are Primrose, Black cohosh, Estrovin.
These "vitamins" also can trigger the hormones to over react.
The traditional treatment for any woman with any female issue is to give them an estrogen base product.(Did you know that soy is estrogen based?)
It goes on and on. Feed them estrogen and all will be fine. NOT!

Gluc is popular in the TTC crowd. I have seen subjects on how so many have ovulated/conceived after being on it for a while. These women want a child so much they are willing to take on the side effects to get pregnant. It is a diabetic medication that is being used for non diabetic conditions.

As for some it is helpful. For others (Me) it, in combination with the Yasmin sent my body into histimine hell. It effected every muscle in my body.
Side effects of both products are termed differently in the medical form that comes with the meds. But if you use a dictionary like I did, you soon learn that you need to take pharmacy terminology to understand the possible side effects.

I tried telling both my doctors for over a year how the meds made me feel. Not one of them listened to me. I finally had to stop them myself. But it was too late. I opted for a full hysterectomy. I soon learned all this information for myself. but for me, it was too late...I lost my tubes,ovaries and uteris from desperation to find relief from the pain.

Not every medication is safe for every person.
Not every one with the same disease can handle the same medications.
Vitamins can be worse for you than "pharmicutical". They are not goverened by the FDA for ingrediant control. That is left up to the manufacture.
So when someone tells you that "herbs" are better than what the pharmacy gives they are uneducated. Herbs can also kill.

Anything that you consume has risk. There are no magic pills.
Each person needs to research every medication and not take the word of any one person for it's safety or abilities.

I am very sensitive to comments about "pill pushing doctors".
(Mainly to do with my sons condition-I hear this too much)
Why are they to be blamed? Aren't we the ones going to THEM for help? Are we not the ones who seek medical intervention? They try to offer to us what they "think" may "help". They only do what they are trained to do. That includes "pill pushing".

Like I said, there are no magic pills for any disease or condition. There are pills that can improve the quality of life for many. But they are not "cures". They only treat certain symptoms. With every treatment there is risk of side effects.

Jenfra,

On a personal note..I don't have all the information to understand why you went to the Hospital.(Different country from the USA?)
What did you hope to find or treatment you hope to receive?
ER doctors here are not trained for general womens health. They are trained for trama injuries. That is why you didn't get any treatment?

As for your swelling. That is common for those who are over weight, diabetic, insulin resistant, high BP, heart eilments and a host of other issues.
They should have told you to reduce your salt,caffene and change your diet.

Have you been tested for insulin resistance? (Very different test from diabeties)All your symptoms do point in that direction.

I hope when you are feeling better you will be willing to share more information with me. I would like to help you.

We all need to fight this disease. the more it is talked about...the more women learn, the better the treatment becomes.

KatCarney · 03-19-2006, 03:05 PM

Quote:

Originally Posted by Jenfra

There are seminars and message boards and information on the website, it's not like we have NO information to guide us, but it is all a mish-mash of info intented only to make us more confused than ever.

You are 100% incorrect here.

I'm the founder of SoulCysters, so I know what the 'intent' of the site is. My 'intent' is a matter of 'fact'...not one of someone else's opinion.

SoulCysters and the information posted is not INTENDED to 'confuse' anyone. I'm sorry you feel that way.

Some of this is just perspective, and you are entitled to yours, but I am of the perspective that knowledge is power. When I was diagnosed, there was NO information in one central location.

Today, it's easier to find a body of research (it's not any easier finding a doctor who can 'put it all together', but the information is there.)

There is no definitive diagnosis for PCOS, so there is no definitive treatment. At this point it's just an educated guessing game. And in all fairness, if you go to ANY message board for ANY disorder - you'll find people who've tried and reported on various treatment methods...that's just the way it goes.

It's all just a 'mish-mash' of information (as you put it.) As someone else mentioned, medical practice is just that: Practice. No one is going to hand you a cut and dried treatment plan on a platter. As patients, we have to do our part when it comes to reading up on:

1) Our disorder, and array of symptoms

And

2) Any medication a doctor Rx's for us

We should also closely track/journal any changes we do or don't notice when undergoing any treatment (be it major drug therapy, or a self-administered herbal tea therapy.)

THAT'S how the 'mish mash' starts to make sense...

As for your anorexia being somehow linked to your pcos...quite a bit a research has been done on eating disorders and pcos. No real need to ponder this one...

You might want to run a search limited to the RESEARCH ARTICLES forum, several articles on the topic of PCOS & EATING DISORDERS will pop up. (Articles intended to INFORM, not CONFUSE.)

As for 'fighting back', I think if it's something you want to do, go ahead. There's plenty to be done. But respect that we all 'fight back' in the way we know how. Mine is in providing information and a place to discuss it, and socialize with others who know what you're going through.

If yours is to inform/educate women with PCOS, and the physicians who treat them, I HIGHLY recommend becoming well-versed on the existing body of research so you can begin to systematically approach the existing problems with the 'system'.

Best of luck to you...it's an important and admirable mission.

PS
I hope you're doing ok since your hospital scare. I ended up in emergency twice last year with swollen legs and ankles. VERY SWOLLEN (my left calf and ankle was 2 to 3 times the size of my right...)

I called my doctor (it was a Saturday) and she told me to call 911 since it might be a blood clot in my leg that could dislodge at any moment. 911 came and checked my vitals and said, "I needed to go to emergency".

I called my doctor back, and said that I'd waid to see her on Monday, and she said, "under no circumstances." I was to stay in emergency until I was seen and cleared of a blood clot (or anything else that immediately threatened my life.)

Emergency didn't identify the problem (they were just trying to make sure I had no 'critical', 'emergeny' issues like Congestive Heart Failure, or Deep Vein Thrombosis - which I didn't.)

They released me, and told me to follow up with my regular doctor on Monday for further tests, since my situation, at that point, wasn't an emergency. (They gave me a list of symptoms for congestive heart failure...if I developed even ONE, I was to call 911 or have somone bring me right back to Emergency)

I didn't find out the real problem until I saw my regular doctor and she ordered and ultrasound of my abdomen. (emergency only did my legs.)

Turns out I had 4 uterine fibroids. The largest one was the size of a baby's head and weighed close to 4 pounds. It was growing backwards in the direction of a vein that went to my legs which is why it had gotten so large I hadn't noticed.

Just an FYI.

KatCarney · 03-19-2006, 03:36 PM

Quote:

Originally Posted by ABumpyGal

I actually agree with you! It's pitiful, IMHO, how little research is done in the how's and why's of this syndrome.

Just out of curiosity, how 'little' is 'little' to you?

I just checked the list of studies published THIS YEAR on pcos...

We're only about 12 weeks into 2006, and there are nearly 100 studies and commentary notes that have been published on pcos. (94 to be exact).

That, of course, doesn't count the number of studies still underway, and those that never get published.

All of this information is available to US and our doctors with a simple search at PubMed. You can also find out what clinical trials on PCOS are going on around the country. (I've provided links to the Studies Search, and the clinical trial seaches here: http://www.soulcysters.com/pcos_books.html )

Below is a list of some studies that have been published this year.

For those women who don't want a 'mish mash' of medical abstracts, the Medifocus Guide regulary monitors PCOS research and organizes the most relevant/well-conducted studies by topic (ie Metformin therapy, Alternative remedies, etc.) This guide also has a list of physicians and researchers around the world (and their CONTACT INFORMATION) who are active in PCOS research. (again, the link to that guide is here: http://www.soulcysters.com/pcos_books.html )

Most medical studies, including the abstracts below contain the FULL contact information of the researchers (including email). I've written several over the years with questions about their findings, and how it might apply to me. They have ALWAYS responded. I then take this info to my personal doctor, and we have a discussion about it. A couple of my doctors have followed up on their own with the researchers. (this was the case when I wanted to take flutamide. Several doctors told me, "no", and I found one who was nervous because it was only FDA approved for treating prostate cancer. But after reading the research I brought in, and emailing some french researchers who did a study on the drug and PCOS women, my doctor agreed to Rx it.)

...oh, here are those studies (14 of 94 published this year, so far)

Effects of Chinese green tea on weight, and hormonal and biochemical profiles in obese patients with polycystic ovary syndrome--a randomized placebo-controlled trial.
J Soc Gynecol Investig. 2006 Jan;13(1):63-8.

Metabolic syndrome in polycystic ovary syndrome (PCOS): lower prevalence in southern Italy than in the USA and the influence of criteria for the diagnosis of PCOS.
Eur J Endocrinol. 2006 Jan

Relationship of Adolescent Polycystic Ovary Syndrome to Parental Metabolic Syndrome.
J Clin Endocrinol Metab. 2006 Jan 31; [Epub ahead of print]

Epidemiology and Adverse Cardiovascular Risk Profile of Diagnosed Polycystic Ovary Syndrome.
J Clin Endocrinol Metab. 2006 Jan 24

Follow-up study of two sisters with type A syndrome of severe insulin resistance gives a new insight into PCOS pathogenesis in relation to puberty and pregnancy outcome: a case report.
Hum Reprod. 2006 Jan 12

Specific haplotypes of the CALPAIN-5 gene are associated with polycystic ovary syndrome.
Hum Reprod. 2006 Jan 5

Insulin resistance and sympathetic overactivity in women.
J Hypertens. 2006 Jan;24(1):131-41. Review.

Relationships between sleep disordered breathing and glucose metabolism in polycystic ovary syndrome.
J Clin Endocrinol Metab. 2006 Jan;91(1):36-42. Epub 2005 Oct 11.

Prevalence and predictors of the metabolic syndrome in women with polycystic ovary syndrome.
J Clin Endocrinol Metab. 2006 Jan;91(1):48-53. Epub 2005 Oct 25.

Identification of a functional polymorphism of the human type 5 17beta-hydroxysteroid dehydrogenase gene associated with polycystic ovary syndrome.
J Clin Endocrinol Metab. 2006 Jan;91(1):270-6. Epub 2005 Nov 1.

Decreased serum paraoxonase 1 (PON1) activity: an additional risk factor for atherosclerotic heart disease in patients with PCOS?
Hum Reprod. 2006 Jan;21(1):104-8. Epub 2005 Sep 9.

Combined lifestyle modification and metformin in obese patients with polycystic ovary syndrome. A randomized, placebo-controlled, double-blind multicentre study.
Hum Reprod. 2006 Jan;21(1):80-9. Epub 2005 Sep 30.

Polycystic ovary syndrome: from physiopathology to therapy.
Minerva Ginecol. 2006 Feb;58(1):55-67.

The role of the central nervous system in the pathogenesis of polycystic ovary syndrome.
Minerva Ginecol. 2006 Feb;58(1):41-54

Polycystic ovary syndrome and its differential diagnosis.
Obstet Gynecol Surv. 2006 Feb;61(2):125-35.