PCOS...Are you sure??

So, in June 2008, my obgyn explained to me that I have PCOS. I have never had a normal period (sometimes I only have 4/year unless regulated with birth control), and I have slight facial hair growth. My weight has always been an issue...so when she told me about PCOS, I felt that I finally had a name to associate with my symptoms. But, I've recently had alot of blood work done so that I can get approved for wls. One of the tests was to determine whether I had PCOS and it was negative...so now I'm confused. Does anyone know what this means?
~Crystal

PCOS is a difficult syndrome to be diagnosed with and it's not just cut & dry if you have x symptoms you have it and if you don't have all those then you don't.  What blood test did they do?  Was it a FSH/LH ratio?  Because really all that does is comfirm that you're not ovulating.  It does sound like you could still have PCOS.  Did they do an ovarian ultrasound to check for cysts?  With the rare periods & facial hair it sounds like you definitely have a hormonal imbalance (the facial hair is caused by too much testosterone).  Have you been checked for insulin resistance as well?  It's quite common with women who have PCOS.  Have your doc run a fasting insulin level...not a fasting glucose level...they are two totally different tests.


There are also 4-5 main types of PCOS.  Check out www.soulcysters.com it's an information/support website for women with PCOS and it has very detailed info on what is/isn't PCOS.  Good luck!

I'm not sure of the test that was given. I know that when I was 1st diagnosed (june 2008), I had an elevated testosterone level. But when they checked my testosterone level jan 2009, it was in the normal range. I've never had an ultrasound and I got a Insulin C-Peptide test that was in the normal range...I just don't know.

Hi Misscrys,

In response to your post.. Like yourself, my lab results were negative. I even had a pelvic ultrasound that showed one cyst, but it was less than a 1/2 inch-nothing to be concerned for. I had a routine pap smear appt. with my Ob/Gyn and based on certin symptoms I was diagnosed with PCOS.  The doctor told me it is very difficult to diagnosis. Look at the list below...do you have any of these symptoms?

The symptoms of PCOS include:

1. Irregular or no menstrual periods

2. Acne

3. Obesity, and

4. Excess hair growth

Other signs and symptoms of PCOS include:

• weight gain,

• acne,

• oily skin,

• dandruff,

• infertility,

• skin discolorations,

• high cholesterol levels,

• elevated blood pressure, and

• abnormal hair growth and distribution.

Any of the above symptoms and signs may be absent in PCOS, with the exception of irregular or no menstrual periods. All women with PCOS will have irregular or no menstrual periods. Women who have PCOS do not regularly ovulate; that is, they do not release an egg every month. This is why they do not have regular periods.

***Reference was from... http://www.medicinenet.com/polycystic_ovary/article.htm

My doc had me do a pelvic sonogram. That's how we were sure

Have you ever been tested for Celiac Disease?  I urge you to get tested ASAP, as many seemingly unrelated health conditions (PCOS, Lupus, Fibromyalgia, Diabetes, acne, depression, arthritis, osteoporosis, asthma, just to name a few) can be caused by undiagnosed/untreated CD (researchers have found a compelling link between Diabetes I and CD).  CD is a malabsorptive condition, and up to 40% of people who are diagnosed with CD are overweight, with 30% of that number being morbidly obese (this goes against what the medical community has been taught).  If you have CD (or Non-Celiac Gluten Sensitivity) and you go on a Gluten-Free (GF) diet, you will more than likely find that the pounds start to fall off without you doing anything other than eliminating gluten from your diet. Incidentally, a GF diet is MUCH easier to follow than Atkins, as it is much less restrictive on carbs - the gluten-containing carbs seem to be the ones that give people the most trouble.

I know about CD because our youngest daughter was diagnosed with it last April (she had NO symptoms, it was picked up on a routine blood screening for kids with Down syndrome).  Since then, I have been on a GF diet and have dropped from 275 lbs. to 237 lbs. while eating all of the foods that I love.  It is, without a doubt, the EASIEST "diet" that I have ever been on!  The other benefit that I have found - quite unexpectedly - is that ALL of my bloodwork numbers have improved, the arthritis in my knee disappeared within 24 hours of going GF, and I have more energy than I did when I was a teenager.  The reason that all of this wonderful stuff happened is that for the first time in a long time my body was absorbing ALL of the nutrients that I ingested - it's that simple.

You may want to try a gluten-free diet for a while and see what happens.  I have been amazed at our family's results over the past 10 months.  Best of all, it doesn't "feel" like a diet at all!  Some people who have excess weight have Celiac Disease and don't know it.  There is a blood test that can be run, but if you don't have any other health issues, it is possible that you are just gluten sensitive.

 

Most people who have problems getting pregnant find that after they follow a strict GF diet for a year, they are able to conceive.

The reality is that SO many more people are Gluten-Sensitive than have actual CD, but a person has to have a CD screen run first to determine if they do, indeed, have it.  Only 3% of people who have CD actually know that they have it, yet almost 1% of the general population is believed to have it.  That's a LOT of undiagnosed Celiacs!

If you go to www.celiac.com , there is a link there which lists all of the health conditions which are known and suspected to be associated with untreated Celiac Disease.  If you have 2 or more of those conditions, you are more likely to have CD.  Many people have their blood tests come back negative for CD, yet they still have problems, so they try a Gluten-Free diet.  If their symptoms clear up, they can safely assume that they are gluten sensitive.

The best thing about the GF diet is that we have been able to eat ALL of the foods that we love - REAL ranch dressing, baked potatoes with butter, sour cream, and cheese, Snickers bars, ice cream, chicken-fried steak with gravy, etc. - the only difference is that the flours that we use when cooking are gluten free (you can find these in many different stores or online).  We have been eating "full" fat foods (real butter, sour cream, cheese, etc.) and have actually lost weight and seen our bloodwork numbers come down significantly.  My doctor (PCP) was skeptical, but the results don't lie, and now she is looking into the GF lifestyle as "the way to go" for all of her patients!

I don't know where you live, but chances are that you have a Gluten Intolerance Group (GIG) chapter nearby.  They can be a wonderful source of information, and most GIG's offer a Restaurant Guide that tells you what is "safe" at various restaurants.  Now, be aware that if you want to have the same results as we have, you CANNOT eat any gluten whatsoever - there is no such thing as "gluten lite"......

My suggestion would be to request your doctor to run a Celiac Screen for you, and then do a "trial" GF diet.  You will want to do it for at least a couple of weeks, preferably for a month.  Don't be discouraged if your weight "yo-yos", because what will be happening is that your body will be converting fat cells into muscle, and muscle mass weighs more.  The weight loss will be slow, but it will be steady over time.  I have "lost" 5 pounds, then "regained" a couple of pounds back over and over due to this process, but the net result has been a 37 pound loss over a period of 10 months.  I would probably have lost more, but I like to drink Cokes, and I don't like to exercise.......

My husband told me that if I DID quit the Cokes and started exercising, I could probably lose weight faster, but I told him that I am "conducting a scientific experiment", and I can only have one variable.  Nobody believes me when I tell them that I am losing weight simply by eliminating gluten, so I am going to see how far this takes me.  So far, so good!  I am confident that I will be able to lose most, if not all, of my excess weight - it may take 3 or 4 years (maybe 5 or 6), but I figure it took me a while to put it on, so I can be patient.

Also, my skin isn't sagging like you see in so many people who lose weight so quickly on WLS.  Since I am eating so much dietary fat, my skin is actually kind of glowing now, and my face is nice and soft.  Plus, some of the complications that I have read about several years after surgery sound EXACTLY like the conditions that are seen in people with untreated CD - it can't be a coincidence that both situations involve malabsorption.  The main difference is that one of them (CD) is very treatable.  Even with a reversal, someone who has had WLS will NEVER get all of their intestinal tract back, so there will always be some form of malabsorption - not something I want to do at all......

One other website that you may want to check out is www.junkfoodscience.blogspot.com - a whole lot of food myths are debunked there, including the one about dietary fat causing heart disease.  There are LOTS of interesting articles on that site that you may find very interesting; I know I did!

CD is a genetically linked condition, and first-degree relatives are at a significantly higher risk of developing CD.  If you do, indeed, have CD, the LAST thing that you want to do is have Weight Loss Surgery!  You would be piling a treatable form of malabsorption (CD) on top of a surgically-induced form of malabsorption (WLS).  Good luck, and please keep me updated!  I am always available to answer questions.  PM me, and I will send you my contact information –

 

Links to Obesity/CD Related Articles:  

Obesity, Overweight & Celiac Disease

 

Link to Essay about Gluten Sensitivity: (This is EXTREMELY informative!)

http://www.baumancollege.org/pdfs/articles/Gluten_Sensitivit y.pdf

 

Link to Celiac Disease / Gluten Sensitivity Symptoms:

http://www.celiac.com/articles/1106/1/Celiac-Disease-Symptom s/Page1.html

Teresa Koch
Fort Worth, Texas