Jo's Story "While my journey with endometriosis has been very up and down, it has made me stronger"

My journey with our friend endometriosis started almost 23 years ago.  I was not long 21 and working as a Nanny for two doctors.  I still remember that first time I had the cramping pain like it was yesterday.  After a few visits to my GP and a few courses of antibiotics that did nothing for the pain I wound up at Waikato Hospital for the first time in 21 years.  Little did I know then that it would become like a second home to me.  A few weeks went by and I had clocked up 5 admissions alternating my time in hospital between the gynecologist and medical ward.  They finally decided that my appendix needed to come out and would operate.

Needless to say, my appendix was fine.  Instead, they found this thing called endometriosis.  I wasn’t told much about it, was discharged, and sent on my merry way.

I had a follow-up appointment with a rather rude and obnoxious surgeon, so I arranged for a second opinion with a gynecologist who performed my second laparoscopy and started me on a course of hormone drugs.  Hot flushes, mood swings, and headaches not to mention the pain seemed to be a new way of life for me at that point in my life.  We tried different contraceptive pills and a Mirena IUD to elevate the symptoms, but nothing agreed with my body.  By this stage, I had moved to Auckland to continue nannying.  I found a new GP that was more helpful than my last, and also a new gynecologist surgeon.  I was in regular contact with my gynecologist in Auckland and he performed the next two surgeries, plus removing my IUD because it just wasn’t working for me.

As time went by I tried newer painkillers, cut down on my caffeine and sugar intake, and made a few other changes, i.e. more exercise, fruits, and vegetables.  I had the good fortune to work for doctors through the really messy painful years of endometriosis and it helped that my employers understood to a certain degree just what I was going through.  But the endometriosis still played havoc with my work and social life.  By the time I moved back to Hamilton I had had another surgery to remove more endometriosis and was just about at breaking point, never had I felt so lost.

I started a new job as a receptionist for an engineering company in Hamilton, which meant a new career and moved back in with my parents.  But things were about to change.  I met my husband and life seemed to be turning around for me.  Or so I thought!  While planning our wedding and a trip to the UK to accompany Matt at a work conference, things started to go downhill;  I was living on painkillers again and was not in a happy place.  My sixth laparoscopy was performed and as Matt and I were due to get married 3 months later we also started talking about fertility treatment. After the wedding, life settled down I started on Clomiphine tablets and the great roller coaster ride that is called trying to get pregnant when you have endometriosis.   As a result of 15 years of living with endometriosis and having had 6 surgeries it just didn’t happen.

We met with the gynecologist again to discuss our next step.  After having more X–rays and yet more blood tests done and it was recommended that we go on the waiting list for IVF.  As the waitlist was so long (18 months) we decided to try adoption and fostering.

I tried Zoladex for about 5 months last year.  It was hell from start to finish, but it bought me some time and saved me from having yet another surgery.  Our IVF start date is just around the corner and I am excited and nervous at the same time.

During all of this, I met Annette at the Women’s Expo and started my journey with the Insight Endometriosis.  I love being out every couple of months delivering the newsletters and getting to know more people in the group at the coffee groups and meetings.  I am looking forward to the Purple Walk this year as it will be my first.

While my journey with endometriosis has been very up and down, it has made me stronger and more able to stand up for myself; my silver lining after everything that I have been through.