PCOS Diaries: I Have PCOS. This is What it Is…

As originally posted on my other blog, Simone Samuels:

September is PCOS Awareness Month!

I must admit — I’ve never heard of PCOS Awareness Month until a couple of weeks ago.

I really only realized that it was PCOS awareness month during the last week of August, when I was doing my customary creeping chilling out on Facebook and I saw some women add borders about PCOS to their profile pic.

Through being in Facebook groups with other women with PCOS, I’ve been reading their stories and exploring the similarities — and differences, but mostly similarities — between our symptoms and suffering.

I recently became friends with another “cyster” online, and she encouraged me to share my PCOS story.

So here goes – the first in a series I’d like to call the “PCOS Diaries.” 🙂

I’ve just used a lot of words/acronyms that may not make sense, so let’s start at the beginning.

I have PCOS and Hashimoto’s thyroiditis (I’ll talk about Hashimoto’s at another time – that’s a whole other story).  I’ve mentioned having PCOS in an earlier blog post, but I think it’s a good idea to explain just what that is and what it means.

First what is PCOS?

What is PCOS?

PCOS stands for polycystic ovarian syndrome.  In a nut shell (so you can skip past the info below, if you’d like — see, I take care of my readers!), PCOS is a hormonal disorder that affects, by some estimates, 10% of women, and involves missing or stopped periods, excess androgens, excess insulin, difficulty losing or maintaining weight, and is the most common cause of infertility among women of childbearing age.   I could try to explain it further, but I’d rather just cite the experts:

PCOS Awareness Association:

Polycystic Ovary Syndrome, or PCOS, is a health condition that affects about 10 million women in the world.

The exact cause is unknown, but it is considered a hormonal problem. Genetics and environmental factors are believed to be involved in the development of PCOS. It is a leading cause of female infertility and is responsible for a number of symptoms that can affect the body physically and emotionally.

Despite the name, many women do not have cysts on their ovaries. In 2013, an independent panel of experts recommended to the National Institutes of Health that the name be changed because the name is confusing and hinders patient care and research efforts.

Hormones involved in PCOS include:

  • Androgens. All females make androgens (also referred to as “male hormones”), but there are often higher levels of androgens in women with PCOS. The excess androgens are produced mostly by the ovaries, but the adrenal glands can also be involved. Excess androgens are responsible for many PCOS symptoms including acne, unwanted hair, thinning hair, and irregular periods.

  • Insulin. This hormone allows the body to absorb glucose (blood sugar) into the cells for energy. In PCOS, the body isn’t as responsive to insulin as it should be. This can lead to elevated blood glucose levels and cause the body to make more insulin. Having too much insulin can cause the body to make more androgens.

  • Progesterone. In PCOS, a lack of progesterone contributes to irregular periods.

Mayo Clinic:

Polycystic ovary syndrome (PCOS) is a hormonal disorder common among women of reproductive age. Women with PCOS may have infrequent or prolonged menstrual periods or excess male hormone (androgen) levels. The ovaries may develop numerous small collections of fluid (follicles) and fail to regularly release eggs.

The exact cause of PCOS is unknown. Early diagnosis and treatment along with weight loss may reduce the risk of long-term complications such as type 2 diabetes and heart disease.

Wikipedia:

PCOS is due to a combination of genetic and environmental factors.  Risk factors include obesity, not enough physical exercise, and a family history of someone with the condition. Diagnosis is based on two of the following three findings: no ovulation, high androgen levels, and ovarian cysts. Cysts may be detectable by ultrasound. Other conditions that produce similar symptoms include adrenal hyperplasia, hypothyroidism, and hyperprolactinemia.

PCOS has no cure. Treatment may involve lifestyle changes such as weight loss and exercise. Birth control pills may help with improving the regularity of periods, excess hair growth, and acne. Metformin and anti-androgens may also help. Other typical acne treatments and hair removal techniques may be used. Efforts to improve fertility include weight loss, clomiphene, or metformin. In vitro fertilization is used by some in whom other measures are not effective.

PCOS is the most common endocrine disorder among women between the ages of 18 and 44. It affects approximately 2% to 20% of this age group depending on how it is defined. It is one of the leading causes of poor fertility.

what-is-pcos
From drsamrobbins.com

Symptoms

What are the symptoms of PCOS?

Canadian Women’s Health Network:

PCOS is a diagnosis given to a cluster or group of symptoms. Different women with PCOS will experience different symptoms with different intensity. The most common symptoms of PCOS are:

  • infrequent or irregular periods (oligomenorrhea);

  • no periods at all (amenorrhea);

  • excessive bleeding during your period (polymenorrhea);

  • enlarged ovaries with multiple small painless cysts or follicles that form in the ovary;

  • skin tags, teardrop-sized pieces of skin that can be as large as raisins and are typically found in the armpits or neck area (acrochordons);

  • a disorder that causes darkening and thickening of the skin on the neck, groin, underarms or skin folds (acanthosis nigricans);

  • thinning hair;

  • excess hair all over the body, including the face (hirsutism);

  • acne;

  • weight gain and obesity;

  • anxiety or depression;

  • increased blood sugar; and

  • infertility (note that not all women diagnosed with PCOS will experience infertility and that appropriate measures should still be taken to avoid getting pregnant if you do not wish to).

 

PCOSGraphic.jpg
Dr. Axe

 

If these symptoms sound familiar to you, I encourage you to read more (check out the links below) and to see a health professional.  I’ll talk about my experience in getting diagnosed later.

Causes

 

PCOSGraphic2.jpg
Dr. Axe

 

Complications

What are the possible health problems associated with PCOS?

PCOS might be a problem of the ovaries, but it changes the body’s hormone levels and can affect the whole body. Untreated PCOS can lead to:

  • Infertility and miscarriage;
  • excessive hair growth;
  • diabetes or pre-diabetes (impaired glucose tolerance) which tends to start at an earlier age;
  • heart disease (such as heart attack and high blood pressure) and higher levels of bad cholesterol;
  • bleeding in the uterus;
  • increased risk of gestational diabetes (diabetes during pregnancy), pregnancy-induced high blood pressure, and premature delivery;
  • sleep apnea (brief periods when you stop breathing during sleep); and
  • slightly increased risk of breast cancer, and
  • increased risk of uterine cancer

f5be7866c91537afacba69de2b0c3ccd.jpg

For More Information

If this sounds like you, someone you know or just sounds interesting in general and you would like to know more, you can check out:

Canadian Women’s Health Network — PCOS

Mayo Clinic

PCOS Awareness Association

Office on Women’s Health, US Department of Health and Human Services

Hormone Health Network

Dr. Axe — PCOS

Dr. Aviva Romm — PCOS

FloLiving

WikiHow — PCOS

PCOS Diva

PCOS Nutrition

Famous Women with PCOS

PCOS is one of those conditions that affect millions of people but that has not been the subject of a lot of research and has gone relatively unheard of in contemporary society.  You may be surprised to know that there are a lot of celebrities and bloggers who live with PCOS:

Whitney Way Thore (has often mentioned how PCOS has affected her weight gain)

cb157f104883e8c9f7751e2f394e.jpg

Jillian Michaels (She’s an example that although many women with PCOS are overweight, there are some who are not.  Some thin women have PCOS.)

Victoria Beckham

Harnaam Kaur (her beard is a symptom of PCOS)

Rose Geil (her beard is also caused by PCOS)

CeCe Olisa

As you can see, PCOS looks different for everyone, including me.

This all perhaps sounds really scary and depressing, and sometimes, it is, but I assure you that I’m not dying (lol), and I actually manage my condition quite well to the extent that I’ve minimized much of the aforementioned symptoms (which I’ll talk more about in my next post).

In my next PCOS Diaries post, I’ll talk a little about my symptoms and my journey to getting a diagnosis (In future posts, I’ll talk about the diet and workouts that work for me, as well as the supplements I take, among other things. :)).

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