No parent wants to see their child in pain

April 6, 2017

 No parent wants to see their child in pain. But pain, at times excruciating, goes hand in hand with a diagnosis of a ridiculously common inflammatory pelvic condition called endometriosis. 

 

My daughter Holly had her first discernible symptoms at 20, one of the most common ages for endo. Little did we know that first trip to the ER with unexplained right-sided abdominal pain was just the beginning of a nightmare ride. 

Days rolled into weeks, weeks rolled into months on a carousel of missed diagnoses, unnecessary intrusive tests and dismissive health professionals. All the while the pain continued and all the while my daughter suffered.  

 

So they diagnosed appendicitis. Holly had her appendix removed, but the pain returned. A year later she had a laparoscopy and a confirmed diagnosis of endo, eight months later the pain was back. They loaded her with every medication under the sun, referred her to psychologists to “deal with the pain”. I kept saying she is dealing with the pain (she’s alive isn’t she?) she just wants the pain gone! 

 

To watch her frustration and continuous struggle was at times nigh on unbearable. To see the hope in her eyes fade as they sent her home from the ER time after time. To see her unable to get out of bed for days on end with heat packs and painkillers her only friend. To see her defer from the uni course she had been so excited to start. I kept hoping and praying that we would find an answer before it got too hard, before she gave up.

 

It took three long years but eventually we hit gold: an endo specialist who said the words we had been desperate to hear. “You shouldn’t be in chronic pain we need to treat the disease.” He organised surgery within days and during a laparoscopy excised (cut out) the disease  - Stage 4 deep infiltrating endometriosis (DIE). 

 

Holly is one of the “lucky” ones. It often takes up to seven to 10 years to get a diagnosis and it is this delay that leads to more complicated disease outcomes including infertility.

 

More research is being done but until a cure is found parents have to become strong advocates for their teens and young women have to be as well-informed as they can.

 

If teenagers are complaining of period pain and it is not relieved by over-the-counter medication, or it is stopping them from attending school or work, seek help — from an expert in endo.

In the meantime Holly has a long road ahead of her. Some days are good, some not so much. So she keeps fighting and I keep praying.

 

Definition: Endometriosis is present when the tissue that is similar to the lining of the uterus (womb) occurs outside this layer and causes pain and/or infertility.  

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