Cushing’s Disease Awareness Day

Are your hormones outta whack?

My Cushing’s Disease went undiagnosed for over 5 years. This is a common story of survivors. Not surprisingly, the concerns of middle-aged, moody, overweight women screaming that it’s not their fault has never been a medical research priority.

Presenting during and after my 4th pregnancy, it was easy for doctors to dismiss my hormonal changes as “normal”. Apparently gaining 70lbs, growing a full lady moustache, losing half of my hair, and lactating years after weaning is just what happens when you’re a woman in your late thirties. I was either recovering from my “advanced maternal age” pregnancy, experiencing pre-menopause, or just settling into my place as a middle-aged mother of 4.

In the legacy of female hysteria beliefs, the medical treatment of “hormonal women” continues to be shrouded in the politics of gender. Our physiology itself has been diagnosed as a pathology so our complaints of hormonal fluctuations are viewed as a normal part of our reproductive life cycle. But any small variance in our hormone function can have life altering and life threatening effects because hormones are responsible for controlling most major bodily functions.

Cushing’s Disease is caused by the overproduction of cortisol in your body from adrenal, pituitary, or ectopic tumours. It mainly targets women (70%) between the ages of 25-55 and is considered a rare disease, with research citing that it affects 10-15 people per million. After finding dozens of online support groups and resources, I believe this number is underrepresented and many, many people remain undiagnosed.

Here is a video clip of my neurosurgeon Dr. Michael Cusimano at St. Michael’s Hospital discussing the symptoms and severity of Cushing’s Disease. They include:

  • Weight gain, especially mid-section
  • Extra fat around neck & back: “Buffalo hump” (sexy!)
  • Red, ruddy, “moon-face”
  • Hypertension
  • Insomnia
  • Menstrual irregularities
  • Recurrent infections
  • Thin skin & stretch marks
  • Poor short-term memory
  • Poor concentration
  • Irritability & mood swings
  • Anxiety & depression
  • Easy bruising
  • Excess body hair growth (hawt!)
  • Balding (fun!)
  • Weak bones
  • Loss of muscle mass & strength
  • Hip, neck, and shoulder weakness
  • Severe acne
  • Swelling of the extremities
  • Severe fatigue
  • Glucose Metabolism: High blood sugar & Diabetes

This disease ravaged my body. It stole my appearance, my self-worth, and my dignity. Even 11 months post-op (for a 9mm pituitary tumour), I struggle to regain full function and control of my body & life.

“Self care” means more than making time to get a pedicure or book a massage (although both highly recommended). It means actually taking care of yourself by seeing your doctor & other healthcare practitioners regularly, and not just dutifully dragging your kids to appointments. It means prioritizing your health, instead of just taking care of everyone else. It means advocating for yourself as fiercely as you would for your child.

If you don’t feel like yourself or suspect there is something wrong, trust your instincts. Make an appointment. If your doctor doesn’t take your concerns seriously, find another doctor and insist on being referred to an endocrinologist. Fight, fight, fight until you know you are being heard. Take care of yourselves, mamas.

 

  1. Carolyn says:

    Thanks for this informative post to spread awareness of Cushing’s. It has stolen too many years of my life but now I am on my way to feeling better.

  2. Your Mum says:

    Keep fighting because you are winning! I am so proud of your strength and determination! It has been a very long road but I am so happy that you are (hopefully) close to your destination! ❤️

  3. Jennifer Best says:

    Great information, thank you for sharing your experience. Stay strong mama and keep fighting the fight 💗

  4. Sheri Hebdon says:

    Thank you for this post and for your honesty. It is so true that healthcare providers dismiss women’s complaints and that we also do it to ourselves and to each other.

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