Dianna's Story - A support network

Hi, I’m Dianna. Where to begin! Looking back, I realise I suffered most months with heavy and painful periods, but just thought it was normal so got on with life.  

In my early thirties, I really noticed my abdominal pain increasing as well as continual right shoulder pain that affected my ability to sleep. Around this time, I decided to take a break from the contraceptive pill, which I had been taking for some years, to see if this made any difference to my health. This is when things went from bad to worse! As I also had neck pain at work I saw a chiropractor on a regular basis for some time, and it was he who suggested endometriosis - so this was where my journey of discovery about endometriosis began, and I am ever grateful for his wisdom and expertise.  

Although my GP at the time was not convinced it was endometriosis but rather kidney- or bowel-related issues, I was referred to a general surgeon to rule these out (previously it had been suggested by two other GP’s I had Irritable Bowel Syndrome and was prescribed painkillers to help with period pain). Once I saw a gynecologist, however, which was followed up with a laparoscopy, all was revealed - extensive endometriosis involving the pelvis, bladder, bowel, and diaphragm. Due to worsening pain levels and suffering the many other common endometriosis symptoms, I made the decision to take leave from my career to focus on improving my health and the likelihood of wanting to pursue fertility treatment in the near future.  

Around this time, my mother told me she had seen a piece in the local free newspaper about evening meetings with Endometriosis Waikato (as it was then known). I went along and learned so much from talking with other women (especially Annette who shared a wealth of her knowledge), attending seminars, and reading everything I could get my hands on. At that time in my life, this support was fantastic and inspired me to find the best way forward.   

A second laparoscopy was performed (10 months following the first surgery) and although I gained some relief from further endometriosis excision, it was now even more obvious there would still be challenges ahead.   As my biological clock was ticking and I had been trying to achieve a pregnancy for some time, the advice was to try an IVF cycle sooner rather than later. Just as things were progressing to our first IVF cycle, I was diagnosed with Coeliac Disease (gluten-free diet for life). This did explain a lot, and although we were disappointed our cycle had to be delayed, I focused on regaining weight and improving my health - with the help of my gastroenterologist - to ensure we had the best possible chance of success with IVF down track. Coeliac Disease can cause fertility problems so I had a double whammy with my endometriosis to add to the challenge. Fast forward through five years - a number of IVF cycles, two miscarriages, an ectopic pregnancy, we finally achieved a successful IVF cycle that resulted in our son who is now three-and-a-half.   

Like many women, my diagnosis of endometriosis was delayed due to a number of factors, and the journey was a roller-coaster ride over a number of years. I tried many alternative treatments including herbal remedies, acupuncture, osteopathy, and natural progesterone (which I still take today) which all helped in some way. Thankfully, following the birth of our son, I was pain-free for two-and-a-half years and only mildly affected with endometriosis symptoms more recently. The relief of pain is probably more to do with my age and perimenopause, but is a welcome relief. I am thankful for the support and understanding of my fantastic husband and family, and the many amazing women through the endometriosis support network I have met over the years.