A mother's perspective of endometriosis

Our journey with endometriosis started when our daughter was fourteen.  She had her first period at twelve years old which was heavy and painful.  By the time she was thirteen, things were no better and we began the rounds of the gynecologists in Hamilton.  The initial reaction of most gynecologists was that the ‘girl’ just had to get used to periods and that the extreme pain that she was describing wouldn’t seem that bad once she got used to it.  When it got to the stage that she couldn’t stand the pain and was unable to attend school, the pill was prescribed.  Unfortunately, the side effects of the pill negated any positive outcome.  The word endometriosis was never mentioned.

I began to question – why was this happening to my daughter?  Was it something I had done during my pregnancy with her, or something I had fed her?  From researching the subject on the internet, I have read that amongst other things, it appears that endometriosis can run in families.  I have since discovered that two nieces (one from my sister and one from my sister-in-law) also have endometriosis, which makes me wonder – is it genetic?

Life with a young girl who has endometriosis is stressful for her and her family.  Holidays and outings were scheduled around her periods.  Some of the pain relief drugs that she was taking meant that she could not go to school.  The drugs were a two-edged sword, as if she took the drugs, then she had less pain, but because most of the drugs had the side-effect of drowsiness, she could not attend school in that state or even remember what she had learned that day.

When she was fourteen, she had a D&C (Dilation & Curettage) at a private hospital.  A gynecologist had suggested this as a way to lighten her periods and bring pain relief.  However, there was absolutely no improvement from this operation.  Instead, she had unhappy experience, courtesy of the staff at that private hospital.

Later on, we learned about another type of operation whereby using a laparoscopy, the endometrial deposits are removed from abdominal cavities.  She had this operation which was performed by a local gynecologist in Hamilton.  Unfortunately, there was absolutely no relief from this operation and it was as though no endometrial deposits were removed at all.  After the ‘operation’ the gynecologist prescribed hormonal drugs (agonists) that were not suitable for a young girl and fortunately, we realised this, and she did not take the drugs prescribed.

When my daughter was eighteen, another local gynecologist referred us to a doctor that worked at the Endometriosis Clinic at Ascot Hospital in Auckland. We learned that this doctor specialised in treating young women with endometriosis. When we visited her, she listened to my daughter talking about her symptoms and immediately agreed that my daughter did indeed have endometriosis and that she would perform the operation to remove the endometriosis.  The operation was very successful and to the astonishment of the doctor, my daughter had relief from pain the day after the surgery. The doctor also inserted a Mirena device into her uterus which has to be removed and a new one replaced every four years.

Last, but not least, my daughter and I are very grateful for the support and friendship that the Insight Endometriosis group in Hamilton provided, from casual chats, sharing experiences, borrowing books, and listening to the various speakers, all got us to where we are today and my daughter and I are very grateful to Annette and the rest of the Insight Endometriosis family.

The upside of this is that she is now able to live a full and independent life.  She is working as a nurse at Starship Hospital and enjoying the social life that Auckland has to offer. 

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