Medications

Share Your Story: Daniela

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Quote: I feel hopeless

Daniela was diagnosed with Endometriosis when she was 22 years old.  Two years later, she shares her Endo journey with us.

Daniela’s Journey:  Hi everyone, my name is Daniela and I was raised in a small town near the border in Mexico and I am 24 years old. I had my first period when I was 9 and I remember that day like it was yesterday because it haunts me. I remember the face of my mom and grandma as if I was going to die. My childhood was over at that moment my body started to change drastically.

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Share Your Story: Katie

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Quote: Don't give up. You know when something is wrong with your body.

Katie was diagnosed with Endometriosis when she was 19 years old.  Now 21, she shares her Journey with us.

Katie’s Journey:  Symptoms first started when I was 11 – my first ever period was agony. At age 12, I had an ultrasound which showed cysts, this was the first time I heard the word endometriosis. I went home and looked it up and everything seemed to suddenly make sense.

I was 18 by the time I finally got referred to a gynaecologist. In September of 2016, I had my first laparoscopy and got diagnosed with endo!

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July 2018 Surgery Recovery

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Photograph of Dr. Mel Kurtulus and Lisa Howard before surgery, titled Resilience; photo taken by Brandy Sebastian
Dr. Mel Kurtulus and I before heading in. Photo courtesy of Brandy Sebastian

As you may know, I like to take extensive notes during my recovery from my Endo surgeries. This helps me better be prepared in case I have another one – just to get a sense of what was normal and what I can expect next time. And who knows – it may help you…or someone you know.

A good friend of mine, Brandie, typed up my chicken-scratch notes. (Thank you BRANDIE!) BUT, the “cliff notes” version is below:

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Share Your Story: Janis

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Black and white photograph of blonde, smiling Janis

Janis was diagnosed with Endometriosis when she was 35.  Now 39, she shares her Journey with us:

Janis Oenbrink;  August 1, 2018

Endometriosis changes the lives of many, and in multiple ways.  Infertility, pain, fatigue, depression, and a multitude of other miserable symptoms encompass the disease of endometriosis.  I have dealt with this disease for years, and along the way, been diagnosed with Irritable Bowel Syndrome, anxiety, depression, ruptured cysts, etc.…. as well as been called crazy, lazy, and a hypochondriac.

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Orilissa: AbbVie’s New Drug to Manage Endometriosis Symptoms

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Screenshot of FDA Drug Label for Orilssa
Screenshot of FDA Drug Label for Orilissa, July 24, 2018

You may have seen news articles and press releases flying around the Internet since yesterday regarding a new drug released to manage Endometriosis pain.  I wanted to share this with you because, although I’ve no intention of taking the drug myself, I know that it may help women who suffer. And it may help better educate you on your decision.

I’ve been following it for a while and you can read my thoughts about AbbVie’s SpeakEndo commercials and website, as well as their expedited application for FDA approval, and the track records of other drugs that have done the same.  And according to Business Insider, Orilissa may cost approximately $850 per month, or roughly $10,000 per year for prescriptions (I’m assuming those figures are calculated without health insurance).  Orilissa is estimated to hit markets for prescriptions in August of this year.

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Share Your Story: Coby-Lea

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Photo of Coby-Lea sitting on a bench in front of a tree

Coby-Lea was recently diagnosed with Endometriosis at 22 years old.  Living in Northern Rivers, New South Wales, she wanted to share her story with others today.

Coby-Lea’s Journey: My story. Coby-Lea, 22 years old, diagnosed with endometriosis. Since I was 13, I’ve struggled with really extreme ‘period pain’ and abnormal cycles. They’d last for nearly 7 days! They’d be heavy. They’d sometimes have some tissue/clotty stuff. I was 13, I didn’t know what to do. Thankfully, my mum took me to the Dr who then put me on the pill to regulate my cycle and hopefully ease the pain. Fast forward 9 years, I cannot take the unbearable pain anymore. I know myself I am not exaggerating every time I say ‘this is the worst pain I’ve ever had!’. And so, this is where it all begins.

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Share Your Story: Michelle

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Photo of Michelle

Michelle was diagnosed with Endometriosis when 20.  Now 35, and living in La Mesa, California, Michelle shares her Endo story with us.

Michelle’s Journey: My endo story I first got my period at 10 years old. I remember I was still in elementary school, playing in PE when I got my first one. From there, my periods became increasingly more and more painful.

By 15 years old I remember rolling around on the ground in the bathroom, sometimes in so much pain that it made me throw up. I would miss school sometimes but most of the time tried to tough it out. My periods were always at least 7 days long, super heavy and lots of huge clots. I thought that was normal…..I was taught to believe this was all normal.

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Reader’s Choice: Melatonin & Endometriosis

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Generic white pills

One of my readers, Erin, emailed me asking if I could look into taking Melatonin for Endometriosis pain and symptoms.  She had heard that it may help reduce the symptoms, pain, and maybe even the lesions themselves.

So, on goes my Research Cap and it begins!

Melatonin is a natural hormone produced by the body as the light fades.  Many people take Melatonin to help them fall asleep and stay asleep.  It’s been coming out in studies over the past decade that Melatonin may play a role in helping reduce Endometriosis lesions and pain.

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Have you Seen the Endometriosis Commercials on TV?

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Speakendo.com webpage banner
Screenshot of SpeakEndo.com; 1/30/18
Updated note (July 25, 2018): Orilissa (Elagolix) was approved by the FDA on July 23, 2018. 

I don’t have TV, but I’ve had a lot of friends and loved ones excitedly tell me that they saw a commercial about Endometriosis recently! I think that’s awesome! A wonderful way to spread awareness to so many people!

Like one friend said, it took me 20 years for a diagnosis – maybe it wouldn’t have taken so long if I had seen a commercial similar to this one. If it can help just one woman begin to search for answers, it’s awesome.

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