About PCOS.

Originally Posted on May 10, 2015 by Heather Hershey

I recently received an email from a YouTube subscriber who wanted to know more about PCOS. I thought this might be great info for anyone who wondered why we put the “Cyst” in CysterWigs!

Hi Heather,

I just saw your channel and, specifically, your YT Vid about the giveaway. What I am curious about is what is PCOS?  

PCOS: Polycystic Ovary Syndrome (sometimes also called PolyCystic Ovarian Syndrome or Stein-Leventhal Disease).

PCOS is a chronic (meaning there is no cure and it develops over the course of many years, perhaps as the result of lifestyle variables or environmental factors), systemic (meaning it effects multiple body parts and systems, and sometimes even the whole body), syndrome (meaning that it is a collection of multiple typical symptoms as part of a cluster; no two women experience the same symptoms in the same way).

Please see my commentary here for a detailed explanation of what PCOS isn’t:

PCOS is not caused by cysts on the ovaries. In fact, cysts on the ovaries are not even diagnostic for all women, as a large percent of women with this disorder don’t even have the cysts. In fact, women can still have PCOS after undergoing a full hysterectomy – so the name is a misnomer.

This is a chronic disorder and at this time there is no cure. Once you have it, you will ALWAYS have it, regardless of how much weight you lose or what kind of diet or medication you’re on. A diagnosis of PCOS means that you will have to manage the disease your entire life – even after the onset of menopause. 

This disease used to be called Stein-Leventhal Syndrome and for a long time doctors thought that removing part of the ovary would cause a cessation of symptoms. This treatment, however, only worked some of the time. That is because this isn’t an ovary issue; It’s a hormone issue. This is a bad thing because hormone issues are much more difficult to treat and understand. In fact, many doctors don’t know anything at all about this disease and think that birth control pills and a diet can cure it. I WISH! 🙂

PCOS is a systemic metabolic hormone disorder, with the principle hormone in question actually being insulin. Insulin creates havoc in women with PCOS and causes weight gain. The fat cells are, in and of themselves, hormone producing and the hormones generated by the fat cells interact with the ovaries and create imbalances of testosterone, estrodial, progesterone, thyroid, and many other hormones…and can often lead to even more irregularities with insulin on top of all that! This often leads women with PCOS, especially those who are a little older like me, to feel like they are on a roller coaster where progress seems to come in small doses with severe rebounds and set backs. 

Insulin biology is a hard thing to overcome, even with medications, diet, and will power. Treating it like a gynecological disorder or a fertility problem (PCOS is the #1 cause of female infertility in the Western world) may help deal with some of the symptoms, but doesn’t address the underlying cause. 

This is why I always recommend that women with PCOS seek out the opinion of a qualified endocrinologist in lieu of a gynecologist or general practitioner. This is a very complex disorder that affects many different systems within the body and the only kind of doctor qualified to treat hormone disorders is a hormone specialist – an endocrinologist. 

Just a little food for thought!

In addition this, another important nugget of info about PCOS are the symptoms. Here, is a fairly comprehensive list of the most common ones, with an asterisk (*) next to any that I have, just in case you are curious:

 – Missed periods/abnormal periods*

– Very heavy periods that last a very long time* (both of these symptoms are just different flavors of a common PCOS symptom called amenorrhea)

– Hirsutism (excessive hair growth in funny places, like the face)

– Cystic acne*

– The classic “string of pearls” ovarian cyst presentation apparent during a pelvic ultrasound

– Rapid, mysterious weight gain that does not correlate with a change in eating patterns*

– Rapid, mysterious weight loss that does not correlate with a change in eating patterns

– Obesity*

– Vitamin D deficiency*

– Infertility* (PCOS is the #1 cause of female infertility in the US. In fact, many women don’t even know they have it until they try to conceive (TTC).) 

– Sharp pelvic pain 

– Male pattern baldness* (androgenic alopecia)

– Female pattern baldness* (also called androgenic alopecia, but present as a more diffuse hair loss throughout the scalp)

– Patches of skin on the neck, arms, breasts, or thighs that are thick and dark brown or black, can be fuzzy and soft like felt or kind of rough and scaly

– Skin tags

– Pelvic pain* (generally sharp, stabbing pain – but if you experience this symptom see a gynecologist ASAP because it could be a number of other things!)

– Depression and/or anxiety* (Could, again, be caused by other things such as environmental factors; it’s usually just something made worse by PCOS due to hormone fluctuations.)

– Sleep disturbances without any obvious cause* (insomnia is common in women with PCOS)

– Excess fat deposits in androgenic placement*: upper arms, middle or lower abdomen, upper back; instead of female placement: breasts, hips, butt, thighs. (FTR: I have both; what this really just means is that a big belly is usually abnormal fat placement for women, who tend to store fat in the boobs, butt, and thighs.) 

– Strange, spontaneous reduction in breast size*

– Deepening of the voice

– Faster and more intense fight or flight response and/or decreased impulse control and/or anger management (from hormonal fluctuations)

– Elevated blood glucose levels*

– Type II Diabetes (Diabetes Mellitus); PCOS is often a precursor to T2D and most women with PCOS will become diabetic during their lifetimes

As you can probably tell, PCOS symptoms can be caused by a LOT of other issues, ranging from the psychological to the infectious. Because of this, PCOS is notoriously hard to diagnose. It is a diagnosis of exclusion. If a doctor diagnoses you on sight, or without testing your blood or a pelvic ultrasound, then seek a second opinion. This diagnosis should not be given lightly.

You don’t need to have polycystic ovaries to have PCOS. The symptoms coupled with any of these can be diagnostic all on their own…

 – Excessive testosterone in the blood

– Odd ratio of luteinizing hormone (LH) to follicle stimulating hormone (FSH) in the blood*

– Pre-diabetes and/or insulin resistance*

 

Left untreated, PCOS can eventually lead to:

– Infertility

– Diabetes Mellitus

– Hypertension

– Stroke

– Heart Attack

– Coma

– Death

This is a chronic disease that disables and kills very slowly…as in, over the course of several decades in most cases. Because of that, it is easy to take it for granted until it’s too late.

If you suspect you have PCOS, then it’s a good idea to seek a competent specialist in the disorder. I recommend going to an endocrinologist in your area…and NOT a gynecologist or general practitioner. This is a complicated hormone disorder and requires a lot of very specialized training in hormones to truly understand. Who better than an endocrinologist (AKA: Hormone specialist)?

PCOS should NEVER be self-diagnosed because so many other disorders could case the same symptoms…and some of those disorders can be immediately life-threatening, including untreated hypothyroidism.

Word to the wise: finding a doctor who is well read on this disorder and knows what they are talking about can be VERY difficult. Be prepared to visit several doctors until you find one who takes your symptoms seriously and is up to date on the latest PCOS research. A LOT of new information has come out about this disorder in the last decade alone!

I have been diagnosed with Hypothyroid and also have, what I thought was, male patterned baldness, but I have other symptoms as well that have not been diagnosed and am trying to find answers.  I was investigating going on hormones, when I came across your channel.

If you are being treated for a clinical (as opposed to a “subclinical” – IE: tests come back normal yet symptoms, such as lethargy, are still present) case of hypothyroid, then you are probably already on hormones! Lots of women with PCOS also have insensitivity to TSH and T3. It is common for these conditions to be comorbid (as in, they occur together). A competent endocrinologist should be able to help you with both of these chronic conditions. 🙂

For the record: alopecia can also be caused by hypothyroid.

If you are seeing an endocrinologist for hypothyroid, then ask them about PCOS during your next appointment. If you are NOT seeing an endocrinologist for hypothyroid…then this might be something to consider. Thyroid issues are hormone issues, and again, my advice is to seek a hormone specialist for it. 🙂

If you are diagnosing yourself – then I urge you to stop.

These are very complicated disorders that can impact various body symptoms. Heck, most trained doctors don’t even know much about these diseases, as the jury is still out about the causes. They are still debating the name and classification of PCOS, for crying out loud!

However, I urge you to see a doctor. Seriously. Either of these conditions can be very serious if not handled properly. Like I hinted at earlier, untreated hypothyroid can cause problems with your heart (the same can also be said for hyperthyroid) and should be considered potentially life-endangering. Take it seriously and see a doctor if this is a self-diagnosis!

But, again, what I want to know is, what is PCOS? And what are the things you pointed to on the under side of your jaw at the chin.

That was cystic acne. Cystic acne is very much unlike the regular, run-of-the-mill breakouts most people get during puberty. Cystic acne occurs much deeper under the skin and is caused by hormones, so no level of exfoliation or cleanliness can stop it. (Though I spend a small fortune on topical stuff and good concealer anyway to try to minimize it’s appearance.) This type of acne presents in large round bumps that are often warm to the touch, very inflamed, and quite painful. Mine also itch when they come in. Spironolactone (Aldactone) is usually prescribed to women with PCOS who have this issue. In my case, I’ve found that it really helps a lot! Even still, I still get the cysts. The only difference now is that I get one or two at a time in stead of a “Beard of Acne” (that’s really what it’s called!) that is typical of women with PCOS.

Now you know!

– Heather

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