Living Well: September is PCOS Awareness Month

It’s after ten at night on Monday and I’ve been sitting here most of the evening wondering what to write for my weekly health article when I saw an article trending on Twitter. I know. Twitter. It’s not my favorite place to pick up ideas from – but there it was. An article from Pop Sugar on PCOS Awareness month – September!

I read through the article and found a few common mistakes that people make when talking about PCOS. So, in follow up to my article on What is PCOS? I’m going dive a little deeper into how PCOS can really affect the body.

Disclaimer: I am NOT a medical professional. I am a health advocate for women’s health, specifically PCOS – since receiving my diagnosis in 2009. I moderate a small group of 710 people – men and women. Women who live with PCOS and their partners who support them.

When I received my diagnosis in 2009, PCOS wasn’t widely known to most doctors. It took many years to come up with my diagnosis after ruling other possible medical conditions out. It took a team of my primary care, hematologist and an OBGYN who said that I was a “classic case” for the disease.

As a moderator of my group, I’ve done a lot of studies over the years and come up with some valuable stats and information that I thought I would share today.

What is PCOS?

PCOS stands for Polycystic Ovary Syndrome which is an endocrine disorder that can cause a hormonal imbalance in women of reproductive age. Diagnosis is very difficult in some cases and often occurs later on in life through the process of elimination of other medical conditions.

While the exact cause of PCOS is unknown, in my research, I’ve discovered that many patients have a family history of infertility, insulin resistance, diabetes, or other hormonal disorders like endometriosis.

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Do I have PCOS?

When it comes to diagnosing PCOS, what I’ve heard most from members of my group is that the process took several years – and in some cases – a team of several doctors and specialists. One thing that I found to be interesting was that many women started their circles very early in life – some as early as eleven years old and complained of weight gain as a teenager, and cramps that were so severe, they became ill from the pain.

Common Symptoms of PCOS

Irregular periods:

This symptom varies from patient to patient. Some women stopped having cycles all together while other women experienced heavy bleeding and prolonged cycles. The common symptom was that there was severe pain with each monthly cycle. If you have had less than nine periods a year, you should book a consultation with your primary care. Other things to look out for include heavy bleeding, large clots, severe pain, and IBS-like symptoms including cramps and diarrhea.

Hormone Imbalances:

While many patients suffer from excess androgen, this isn’t true for all patients. If your body produces excess androgen, you may have unwanted facial and body hair, or experience adult acne or even bald patches on the top of your head. For some patients, their bodies may produce too much testosterone. These symptoms can really impact the way you feel about your appearance – which can result in anxiety and depression.

Polycystic Ovaries and Infertility

This one is a little harder to diagnose. Women can have cysts on their ovaries and not have PCOS – while others like me – can have PCOS without ever having a cyst on the ovary. Ovarian cysts are detected through a vaginal ultrasound. And don’t worry. It’s not as “icky” as it sounds – I’ve had my share of them over the years.

To make matters even more confusing – in my case – follicles that contain eggs start to grow but fail to receive the correct signals for fertilization. They become atretic and remain as small cystic areas on the ultrasound. This prevents ovulation from occurring which is why PCOS is one of the leading causes of infertility in women.

My doctor and I have a good laugh and call them “immature” follicles. There’s a good joke in there somewhere. And sadly, in my case, due to a tilted uterus, having children is not possible for me. It’s just too dangerous. But many women I know have had success with fertility treatment.

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Other things to know

Insulin resistance: is a common problem with patients of PCOS. Insulin is a hormone that is produced in the pancreas that allows cells to use your body’s primary energy supply which is sugar. When cells become resistant to the action of insulin, blood sugar levels can rise which can result in high levels of androgen. Many patients of PCOS also have diabetes or high blood pressure. A low-carb diet like the ketogenic diet is often used to manage symptoms of PCOS.

Low grade inflammation: there is some research that has shown that women with PCOS have low-grade inflammation which can also lead to heart and blood vessel problems. This can lead to things like swelling of the legs or arms . This can also lead to pain and even water retention.

Weight-gain: many women with PCOS are obese or struggle to lose weight. But not all PCOS patients are obese. There are some very thin women who live with this condition which makes it so difficult to diagnose.

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Diagnosing PCOS

As I mentioned earlier, PCOS is one of the most difficult conditions to diagnose. I even struggle on what to call PCOS. Is it an illness? A medical condition? A disease? Every resource you look at calls it a different name.

Some websites like the Mayo Clinic call PCOS a hormone disorder while other websites will call it an endocrine disorder. I’ve had legitimate battles online with medical professionals on what PCOS actually is. So, how can a condition like PCOS be diagnosed when medical professionals can’t even agree on what it’s called?

My diagnosis took over twenty years. I’m sure that I’ve had PCOS since my cycles started as a pre-teen. I started gaining weight in the mid-section around the age of twelve. I blamed my knee, and the knee surgery, but I’m pretty sure hormones played a role too. Like many others, I battle with adult acne and thinning of hair. I’m lucky that I don’t have excess hair on my face. But I do, as you all know, struggle with weight gain. This has been a constant battle.

If you are a young woman struggling with all the things I’ve listed above – then I urge you to book a consultation with your primary care physician. Make a list of concerns and questions and bring them to your appointment.

Your diagnosis will include:

  • A review of your medical history, and possibly your family history
  • Blood tests
  • Pelvic exam
  • Ultrasound to check for ovarian cysts

If you are under eighteen and still living at home, and think you might have PCOS, please chat with your mother, or an older female you can trust. There’s no shame in discussing your monthly cycles with others. You can even share this article with your family or medical team if you’re concerned about PCOS. Write down all your questions and take them to your appointment with you.

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Treatments of PCOS will vary from patient to patient depending on symptoms. But here is a very general summary of what is being done now.

  • Hormone Replacement Therapy (Clomiphene, Letrozole, Gonadotropins, etc)
  • Lifestyle changes – diet, exercise
  • Medications for symptoms (acne, pain, diarrhea, etc)
  • Birth control pills to help regulate cycles
  • Metformin (medication)

In very severe cases, a complete hysterectomy may be needed to remove the ovaries. I don’t have experience with this – as it’s usually a last resort for treatment of PCOS. If you have your ovaries removed before menopause – your body will go into early menopause and you will not be able to have children.

September Awareness Month

Living with something like PCOS isn’t easy. I know for me, there are at least two days out of each month where all I can do is sleep all day from the painful periods. It’s not something I enjoy talking about with others – but I’m so thankful for the support group that I run. I’ve learned so much from the women (and men too) in the past eleven years since receiving my diagnosis in 2009.

I feel strongly as a self-declared health advocate that PCOS is something worth talking about and sharing with others – even if it can be embarrassing to share intimate details about my body. But if no one shares this information – then how can we help educate others who might have PCOS or similar conditions?

Please join me by liking this article, sharing it with your female friends or family members. If you’re a mother to a young teenage daughter – don’t be afraid to have these discussions about monthly cycles. Use articles like this to open that dialogue up. If you’re a teenager reading this article who thinks you might have PCOS – then please share this article with someone you trust.

By spreading awareness about PCOS, not only are we helping each other through the bad days, but we are also educating others who may be suffering in silence and not even know this condition exists.

Thanks so much for taking the time to read this. And welcome to all my newest followers! I appreciate each and every one of you.

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