PCOS/Insulin Resistance Support - PCOS--with no treament at all?

Okay. This post may be a bit controversial but please forgive my ignorance and bear with me. Mostly, I am just trying to work all this out and I am kind of overloaded with information right now and wondering what to do.

Without any treatment for PCOS, what is the worst thing that could happen to those of us diagnosed with it? Would it get "worse"? If so, what is "worse"?

Personally, I am wondering if not having a period ever again really matters to me. (it really doesn't except that it bothered me to not know why). I don't want kids and I kind of liked having all that testosterone floating around in me because my libido was crazy good! And, a little hair on my chin, well I am Italian and know how to deal with that! Yeah, I am overweight----so what? I like me and always have--just the way I am. I work out at least three times a week and eat a low-fat veggie diet. I don't have any cysts and, providing my glucose tests come back okay, what is the worst thing that could happen if I just say, "to **** with it!" and forgo treatment?

I don't know. I am always leary of these SYNDROME diseases and wonder if doctors don't just diagnose us with them because they don't know what else to tell us. I don't want to be on medications for the rest of my life just because some fool doctor didn't know what else to tell me!

I don't even take aspirins, except in an emergency. I will take antibiotics, if I need them but really that's it. My grandma raised me this way. She has lived pretty-much drug free for her entire life. My grandpa, too. And they are nearly 90 and I have never had to visit them in the hospital, nor are they on any type of daily medications.

It just seems like the medical system is a vicious cycle and I don't want to go there! You have a symptom, you get pumped full of drugs. You feed the pockets of drug companies, while their drugs just cause more problems in your body--which causes you to need even MORE drugs. It just doesn' feel right!

Has anyone else felt this way?

Betty

Left untreated PCOS leads to:
Cancer
Heart disease
Heart attacks
Strokes
Diabetes
and more complications

I heard of a 28 year old who was under no treatment at the PCOSA member area who has had THREE heart attacks.

When you dont shed the lining at least 4 times a year, you are supseptable to Uterine cancer AKA Endometrial Cancer

Cyst issues, even ovarian or cyst bursting.

Endo worsening possibly- endo is painful and damaging.

PCOS is also passable to your children. So its important to keep an eye on them should you have any in the future.

ITS SO VITAL to your health over all that you be treated. Just because you may be fine in some of these areas now, doesnt mean it will last. PREVENTION IS KEY! Cant stress that enough. I too do not take meds for nearly anything...not even asperine. I hate meds but I will not defer from my gluc. This is saving my heart! I will ONLY take this medication. I may have to add a small dose of avandia to it but I wont do more then that. Im not a medication person but will do it if its going to save me.

Betty, You should get a precription for prometrium if you are having a period. If you don't have a period it bulids up inside of you and can let you cervical cancer!

Please see a doctor!

I was like you, doubtful if this ever really was important--until my worst fears were confirmed today. You see, I had an ultrasound to check for viable follicles since I am trying to become pregnant. Now I know that you aren't, but what I saw scared me even more. The technician counted 10 eggs growing on my ovaries--and that's only the ones she measured! She said there were a lot of others. Basically, my ovaries are coverd in cysts and eggs. This is the real nature of PCOS--what it really does to you in a very quantifiable way. It's one thing to hear things like "chemical" and "hormonal"--these are buzz words that come with the territory as a woman. But I have never seen a sight like this and suddenly everything about PCOS became very clear: this is not normal and it must be treated. To forgo any treatment is the equivalent of playing Russian roulette, any day I could die. And I have a whole lot to live for! I urge you to have that ultrasound and take a look at your ovaries. To see it will make you believe everything you've heard to be true.

Hopes this helps you in some way :)

Just to clarify, no, I do not believe it leads to cervical cancer. This is usually a different source, or so I was told by my RE and another family doc. PCOS leads to Uterian/Endometrial cancer, as I understand and not cervical cancer. The diffference is one is inside the uterus, the other the cervix which is below the uterus. It lies at the end of the vaginal canal and what is measured during fertile days with the index finger.

Just to clarify. I am seeing a doctor. The truth is, I am just not sure if her diagnosis is correct. She diagnosed me as soon as she noticed the hairs on my chin (and I am Italian, so this is pretty normal for me)!

I got my glucose results back yesterday. TOTALLY NORMAL. The ultrasound was TOTALLY NORMAL. My LH and FSH were TOTALLY NORMAL. My exam was NORMAL. The only test that came back elevated was testosterone. I asked the nurse and she says that this is what the doctor has based her diagnosis upon.

I find it hard to believe that elevated testosterone is enough to diagnose a person with an entire syndrome! It just seems like an easy diagnosis. I mean, look at all of the symptoms! You cannot tell me that every woman who has any ONE of those symptoms has PCOS. It doesn't make sense to me. And I worry that a lot of women are being told they have disease and spending a lot of money on healthcare because of it and or, not losing weight or taking care of themselves because they "can't" lose weight with this disease. It just makes me think of the old days when women were diagnosed with "nervous disorders" and "Hysterical whatevers" because the doctors don't really know.

I am just having trouble trusting a diagnosis unless there are test results to back it up. In my case, I don't think there were.

Now, a lot of people have said you don't have to have all of the symptoms to have the syndrome and I am taking that into consideration. But I am going to get a second opinion anyway. Just to be sure.

Im YOU!

My LH:FSH is 1:1, normal. MOST PCOSers are "within normal ranges. The only thng I had for a long time was elevated testosterone. This is why its SOOO hard to diagnose. I didnt have ovarian issues until last year.

PCOS gets worse with time. Never better when untreated. So, you are probably in the "ok" area.

I know its so easy to question but try to realize that this is a difficult diagnosis to diagnose.

See my site for a COMPLETE list of symptoms: http://pcos.itgo.com

Okay. See, now reading that lists just makes my confusion greater. You say that just ONE of these symptoms means you can be diagnosed with PCOS.

Now assuming that someone has just one of the following symptoms, how can a doctor know for sure that this "symptom" is from PCOS or from something else?

For example, let's say my only symptom is increased menses. Now I can pretty safely assume that there are many diseases and problems that can cause this symptom. So, tests should be done to rule out the majority of them before a diagnosis is made. But, according to your website (and others I have seen), this one symptom could mean PCOS!

In my case, the doctor said (without even examining me), "I think you have PCOS but I will confirm that diagnosis with an US". Okay. This tells me that PCOS is a REAL disorder and not some trashcan guess. It can be proven with tests! I could assume logically that if the US comes out okay, the diagnosis is NOT confirmed. Cool. Makes sense.

Well no, scratch that! According to the vast diagnosis criteria of the illusive PCOS, the tests mean nothing. It comes out normal, but the diagnosis stands! Why even bother to do the ultrasound, then? The glucose comes out normal but the diagnosis is PCOS anyway. Why bother to check it then?

I understand what you are saying, HS, about the possibility for this to get worse and the possible eventuality of a person developing ALL of these symptoms, but from what I have seen, there is really NO WAY to confirm PCOS with a true scientific diagnostic tests. Do you see what I am saying?

To me, a disease needs to be proven. I am not saying that women don't suffer from the symptoms of whatever it may be but isn't it convenient for our healthcare professionals to have ONE handy little disease that covers at least 15 symptoms! Wow, my doctor can just start printing up prescription pads for glucophage now, because the next 100 women who walk into her office will fit at least one of these symptoms!

You mentioned, HS, in a previous post that there is an ACTUAL TREATMENT for PCOS (and it is Glucophage, not BCPs). How can it possibly help you to take a diabetic med if you are not diabetic or IR? This seems like it would be REALLY BAD for your precious body!

None of this makes sense to me. (And my frustration is not directed at anyone here, BTW. I just want to hear some intelligent talk about what we REALLY think is going on here.) My comments are directed toward the medical profession and the Church of the Holy Healthcare System, that makes us trust automatically what doctors tell us. I want to be honest with myself and encourage you all to do the same.

I am not willing to simply accept what she tells me, with no proof.

I lived for YEARS with another SYNDROME which turned out to be a crock of crap and a convenient way for my doctor to get me out of his office without admitting he didn't know what was wrong with me (Fibromyalgia, BTW). That diagnosis was more about saving his ego than about treating me with dignity and respect.

I don't have Fibromyalgia and I never did! I was miserable for YEARS becase I thought I had this horrible debilitating muscle disorder. I didn't do what I wanted to do because I was afraid I was far too fragile to dance or run or play.

Then, 8 or 9 years into it and quite by accident, I found out the real problem was that I wasn't sleeping properly. Surprise! After treatment for sleep disorder, I was miraculously HEALED from the so-called "syndrome" that pained me, depressed me, gave me headaches, dysmennorhea, cognitive disorders, parasthesia, problems with my equilibrium, chest pain, dizziness, itchy skin, restless legs, allergies, frequent urination, swollen extremeties, insomnia dry mouth, urinary tract infections, facial pain, chemical and sensory sensitivity and TMJ, screwed up my bowels, kept me from walking around, worried me into anxiety attacks and about 500 other symptoms of FMS that every individual in America would "have" if a doctor decided that were the case.

I just don't want to be scammed again, that's all.

Thanks for listening to my rant.

Peace,
Betty

I just had to ask...but you had all those symptoms for sleeping improperly? That doesn't make sense to me. That sounds like Fibro...my sister in law has it.

Just correct me if I am wrong. :)

Betty,

I can empathize that you have had a raw deal with the health care professionals and are (rightfully) angry. You can decide whatever you want about the PCOS--how you choose to act on your own behalf is entirely up to you. But here I have to step up to the plate and say that this forum is for support for those who ACCEPT they have PCOS. It seems you DON'T accept it and that's your right. But---the information that several people, including myself, have posted here for your benefit has largely been ignored. Ranting on about something that you don't accept is only increasing your frustration and distrust. I suggest you search the internet for alternative sources of information about PCOS, i.e. other health related websites to give you more information if that's what you need. Everyone here has been more than helpful and I'm sorry we can't provide those answers for you. Try www.soulcysters.com, they have a wealth of information.

My two cents worth, if necessary. I have been diagnosed with this from a gyno looking at my history of irregular periods and that was it. No ultrasound, no blood tests, nothing. I no longer see him, but the other 4 doctors I have gone to so far have NO IDEA what I am talking about. It seems there aren't a lot of doctors out there who believe it even exists, so I can see where you would be skeptical. I encourage you to get a second opinion, and factor in the things that could be affecting your test results. I am on a low carb diet, so when they tested my glucose it was normal. Turns out, you have to eat over 200 carbs per day for 4 days prior to having that test done for the results to be accurate. I didn't know that, and that skewed my results. Good luck to you with whatever path you choose!

Plain and simple Betty/Electra, it takes a GOOD PCOS knowledgable doctor to do that. Get as many opinions as you need but dont put yourself into denial either. I KNOW its hard to find people you trust but if you do the research and get several opinions and answers to your questions from QUALIFIED PCOS docs, you should be able to accept it. You wont have a peace of mind if you dont.

PCOS IS a pre-diabetic disorder. It CAN be treated with gluc because of this. There are MANY MANY factors that make up PCOS.

KEY: ANY doctor that diagnosis WITHOUT ALL the blood work, medical history and u/s does not know about PCOS. Its a story. Its diagnosed as a WHOLE, not any one symptom or one hormone blood range. It takes a GOOD doctor to do this. As it says ONE listed symptom on my site and others means you CAN be PCOS. Cant know for sure until everythign is looked at. Its just another thing to look into.

The doctor that cleared you with an u/s is wrong because he didnt do it all. Hes uneducated. Its like saying, Im looking at you, no exam, you have acne. "Oh, you're not eating right." Bull crap! Didnt do blood tests or skin tests to see WHY the acne is there.

Michelle/Alliance
Sleeping issues are usually accompanied by IR patients. PCOSers/Diabetics often have sleeping issues. It has to do with the whole hormone/insulin "cat fight" if you will going on in the body.

To both:
Its just important to remember that the Endocrine system is a complex system and takes docs of excellance to treat and diagnose.

Because PCOS is so difficult, like trying to tell the sex of a chicken before it hatches, many docs dont know a lot about it. Look from your peers to find qualified physicians and from the PCOSA.

Pooky said, "But here I have to step up to the plate and say that this forum is for support for those who ACCEPT they have PCOS. It seems you DON'T accept it and that's your right. "

>=>= And I would like to step up and say that whether I accept a diagnosis or not, is not the point. I haven't decided whether or not I accept the diagnosis. So? Does that mean I am not "allowed" to post? Also, to be technical, I could not find anywhere on this site information that states that you must even have this disease to post here, let alone accept the diagnosis. Please correct me if I am wrong.

You see, I am posting my thoughts to try and organize the information and to see if anyone else has felt the same way. It is my understanding that this forum is for people who want to talk about PCOS and that is what I am doing here--talking. I may be a bit direct but I am really not concerned with what anyone thinks about my personal style of communication. I have been respectful to everyone here and will continue to be.

I also think that every post here can help bring about new information or help people form their own thoughts regarding this disease. If you don't want to read my posts, then don't. My name is right next to the message subject. If you don't want to be part of it, do as Dionne said and, "walk on by".

It seems to me that on this board and many others, women are content to accept this diagnosis without any question whatsoever. That's your right. If you are content to accept your diagnosis--good for you! I however, choose to question everything because I believe that my natural tendency to accept things blindly is what get's me into trouble in the first place.

Also, I have read, EVERY post on this PCOS forum as well as the information posted on this site and many others. I am also involved with three other message groups. Believe me, I am getting all of the information that is available to me. I have scoured every site I can find about PCOS and have ordered ALL of the books on Amazon. I have also posted information that I found to be useful or interesting.

It is precisely all of this information that causes even more confusion. Quite frankly, I am not going to jump on the PCOS bandwagon until I feel sure that I understand properly. I would hope that there would be more people who felt the same way.

I am not trying to debate anyone here. I am just trying to make sense of something that does not seem logical to me.

Alliance, All I can tell you about FM is that I had many of those symptoms and more in a 9-year period and once I got some sleep, every symptom disappeared and now I feel fine.

HS--Thank you for your information, I have processed it, just as I did all of your other posts. And I appreciate you taking the time to respond. I also meant to ask you about your title. I had no idea there were professional PCOS Educators! Is there a certification program or did you have to go to nursing school to learn all that you have? I would love to learn more about the program and possibly purchase some class materials to read over.

Betty

LOL No no. I am a "professional?" educator from experience and education on the subject. My knowledge comes from dealing with this for 21 years, diagnosed 17, and interacting with 5 doctors (family, RE, Endo, Derm and Sugrical Gyna all who have PCOS specialties. I HUNTED for these wonderful docs who all treat me collaboratively.). I litterally have visited schools to speak, spoken and presented at several seminars and run my own support group. I also run the PCOS board at Fertilethoughts. If there is ever an answer I dont know, I contact my doc that diagnosed me, my RE and the endo for enlightenment. They "train" me if you will on things that I dont know or have a hard time grasping.

I do not hold any degree or certification, unless a huge pack of patient folders works. I have never been to medical school. HTH!

Betty, what was your sleep disorder? Makes me think...I have so many of the symptoms you list above!

Good Lord!!! What's going on here?????

Well, to throw my 2 cents in----i believe that PCOS is a syndrome not a disease. It can contribute to diseases. Basically, electra, you need to have some kinda something so you will have a period every month. If you don't shed your lining it can lead to endometrios and endometrial cancer. That's it in a nutshell.

AS A HEALTHCARE WORKER---It is very hard to diagnose these things. Basically--you toss everything in the basket, test for everything and eliminate symptoms and signs until you find the right disease, disorder, syndrome.

I'm also a Registered Polysomnographic Technologist----(sleep disorders)--What exactly did the sleep disorder center tell you have??? Fibromyalgia is a sleep disorder as well as about 100 others.

I respect your opinion and your research. That's my 2 cents, that and a dollar will get you a cup of coffee:D

debyj

Most sleeping disorders with PCOSers tend to be

Restless Limb Syndrome, where your limbs wont allow you to sleep because they are so aggrevated.

Frequent waking up for no apparent reason

Frequent bathroom trips usually contributed to bladder disorders, yeast infections or UTI's.

Not able to sleep longer then a certain amount of hours.

Very light sleepers. Everything brings you out of REM.

Lack of REM sleep time. I hear youre supposed to have at least 3 hours of REM? Not sure but PCOSers tend to wake out of REM sooner then recommended.

I shouldnt limit this to PCOSers, its actually IR patients. It has to do with whats going on inside our bodies.

Thanks HS…and Deby J (and, I wish I knew what was going on here. Apparently, I caused a commotion, by mulling over some thoughts I had.)

AND for those of you have mentioned it, I am being treated with Yasmin to try and have a period. Believe me, I know I need to have one after 12 months of not!

Jenniffer, here is some info on my sleep disorder. There are lots of different ones, however.

I have an upper airway restriction that has gotten worse as I have gotten older and fatter. (yes weight plays a role in this) The way your jaw and neck are shaped are also significant risk factors.

My obstruction is similar to Obstructive Sleep Apnea in that I stop breathing when I sleep. However, in true Apnea, a patient loses a significant amount of oxygen in the process because they don't wake up when their airway closes. I was fortunate in that I woke up frequently.

What it feels like:
If you have ever stayed up all night cramming for an exam or partying, then the way you felt the next day is similar to what you feel like with a sleep disorder. It can also be compared to having the flu in that you are achy and tired and feel run down.

For me, I snored terribly and tossed and turned all night. When I woke up, my body would ache and I would feel as if I have run a marathon. I never remembered my dreams (because I wasn't having any) and I generally felt as if I had been hit by a truck. I had a sore throat every morning and I caught EVERY cold that went around (I haven't had a cold or flu in two years now!). I developed some depression. I sweat all night. I had no interest in sex. And I was SO TIRED all the time and had no idea why! Because I thought I had FMS, I attributed everything to that.

Here's an official list of symptoms from Sleep Quest:

Fatigue and tiredness during the day.
* Loud snoring; if the loud snoring is repeatedly punctuated by brief periods of silence or choking sounds, the individual is certain to have obstructive sleep apnea.

Other common features are:
* Obesity
* Small jaw, thick neck
* High blood pressure
* Restless sleep; the repeated struggle to breath can be associated with a great deal of movement.
* Depressed mood and/or irritability
* Reduced sex drive and impotence
* Snorting, gasping, choking during sleep

Not as commonly reported but may be present:
* Feeling that sleep is strangely unrefreshing
* Difficulty concentrating
* A dry mouth upon awakening
* Excessive perspiration during sleep
* Heartburn
* Rapid weight gain
* Morning headaches
* Change in personality
* Memory lapses
* Intellectual deterioration
* Frequent nocturnal urination (nocturia)
* Confusion and severe grogginess upon awakening
* Specially in young children, large tonsils and adenoids. There may be chest retraction during sleep (the sternum and the spaces between ribs pull unnaturally inward when trying to inhale)


You can have a sleep study done where they hook you up to a million electrodes and monitor your sleep patterns, movement, breathing etc. It's pretty interesting :)

Here's a good link for ya…

http://www.cpapman.com/disorder.htm

Betty

HI Betty---You being treated with CPAP?? It seems you are very well informed---Can you come work at my Sleep Lab??:D

I was diagnosed with PCOS about 15 years ago---I'd never even heard of it. I had 4 or 5 doctors say, no you don't have it. Finally, after years of trying to get pregnant----I was diagnosed. But, i have a period every month and i still can't get PG! Soo, it's all those damn hormones if ya ask me!!

Debyj

When I go to sleep, I sometimes feel like I can't get all the way to sleep because as soon as I drift off, it feels like I quit breathing, and I wake up and take a deep breath. Sometimes right after falling asleep I also wake up and gasp. When this happens, I can usually fall asleep better on my side. I rarely notice it later at night, but I do wake up 2-3 times a night to use the bathroom. Getting up might be subconscious habits though, because I always check on my son right before or right after. I snore, but according to Rob, not as bad as I used to. I think

I do sweat at night. I never feel it on me, but when I wake up I feel like I have been sweating in the past.

Can the lack of deep sleep cause various weird chest pains? Betty, was it you that mentioned chest pains earlier? So far doctors cannot find the source of my chest pain. Treadmill was good, endoscope was good, ct-scan was good, but I still have odd pains around and behind my left breast. Also have pressure from time to time in upper chest. I was supposed to get checked again from cardiologist, but they called and rescheduled AGAIN!

What kind of doctor do I need to see to get referred to our sleep clinic?

Hi Jennifer---you probably have sleep apnea--It's probably better now cause you are losing weight. The chest pains could be reflux. Even though you don't have heartburn, it can cause really bad pains. I've also noticed that on a low carb diet, you can really get some good heartburn, gastritis going, cause you don't have any starches to soak up the acids. I got reallllyyyyy sick from low carbing from just that. That's why i'm doing the low glycemic index diet instead. If you are c/o excessive daytime sleepiness and wake up gasping, you probably need a sleep study. They can also check your heart while you are sleeping. Hope this helps---debyj

Jen could be several things.

Heart disorder/disease (common side effect of PCOS over time) so force them to take you seriously! Do not allow them to rescedule you! Too important.

Lung Collapsing or increased lung pressure. I get this after swimming or laying down a lot (usually when Im sick). It hurts really bad when I inhale for about 2 days after swimming. I informed the doc and he said its because that perticular lung is a "secondary" lung and when swimming/laying down it causes it to become equalized with the other thus causing pain because its not used to being equalized. The primary lung will take in more air when you inhale than the secondary. Thus causing it to be "stronger" and used to the pressure. My right lung is the secondary one.

Lastly, heart burn as mentioned or reflux acid which burns the esophagus (sp?)

Jennifer--You can get a referral from your regular doctor---debyj

Man, am I glad the tone of this post is changing! ha ha

Anyway, yes I had some chest pains but it was never confirmed whether they were caused by the apnea. But I had an EKG and my heart was fine and I haven't had any since. :)

DebyJ, I will come to work in your center, if you get me a discount on CPAP supplies! ha ha (I am going crazy trying to find a new mask because mine is leaking and I can't afford a new one right now) :)

Anyway, Jenniffer, if you tell your doc that you want to be tested, I am sure they will give you a referral. Insurance will probably pay for most of it.

:)
B

Hello - I hope you don't mind me sticking my nose in here but I too am confused...

I was diagnosed with PCOS in 1998 by a gynaecologist after having a blood test and a scan of my ovaries which showed multiple cysts. I was put on a birth control pill but after my husband had a vasectomy I went back to my GP earlier this year who told me that it was up to me if I wanted to continue to be on the pill - she didn't see much point as the pill will actually give me a 'withdrawal bleed' not a 'proper' period. I am actually ovulating about 3/4 times a year. She said that I was at marginally higher risk of 'reproductive system' cancers but I was not likely to suffer from brittle bones when I get older!! I am a little baffled and would be grateful if you think I should be on the pill... any advice would be gratefully accepted. Thanks.

The pill does little. It ONLY helps with menses, acne maybe, reducing cysts in size/numbers and ovary size. It is NOT a treatment for PCOS. Glucophage IS a treatment for PCOS and will help with menses.

Also, how do you know you are ovulating 3 to 4 times a year? The only 100% sure way is by taking a progesterone test every month. You can have a menses without ovulation, which is quite common in PCOSers. This is the reason we tend to get cysts. The folly grows but never reaches maturity. It continues to be lightly fed and doesnt die out. It then becomes a cysts: a dead egg. Gluc will help wit this as well. Gluc is known for helping to normalize PCOS and should be taken for the rest of your life.