PCOS--with no treament at all? - 3 Fat Chicks on a Diet Weight Loss Community

Electrawoman · 09-09-2002, 01:13 PM

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

HopefulSpirits · 09-09-2002, 02:02 PM

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.

Alliance · 09-09-2002, 07:03 PM

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!

Pooky · 09-09-2002, 08:13 PM

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

HopefulSpirits · 09-09-2002, 08:37 PM

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.

Electrawoman · 09-10-2002, 10:30 AM

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.

HopefulSpirits · 09-10-2002, 01:55 PM

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

Electrawoman · 09-10-2002, 03:30 PM

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

Alliance · 09-10-2002, 04:28 PM

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.

Pooky · 09-10-2002, 05:05 PM

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.

goodforme · 09-10-2002, 05:22 PM

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!

HopefulSpirits · 09-10-2002, 06:02 PM

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.

Electrawoman · 09-11-2002, 03:02 PM

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

HopefulSpirits · 09-11-2002, 07:50 PM

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!

Jennifer 3FC · 09-12-2002, 12:36 AM

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