A Journey to Diagnosis - Part 1

By Amanda Burgess

It was back in May 2010, at the age of 29, that my life changed forever.

I’d decided to stop taking the pill, which I had been on since I was a teenager due to bad acne, as my husband and I had been talking about having a baby soon. That decision impacted every aspect of my life in ways that I could never have imagined.

The first period I had after stopping the pill was uncomfortable, more painful and felt different to what I had been used to. Of course, like many women I just brushed it off as being period pains and my body adjusting to stopping the contraceptive pill. Yet as each month passed my pain increased and I became more reliant on over-the-counter pain medication to get through work or daily activities when I was on my period. I recall clearly one day when I had to finish work at lunchtime as I was so unwell and headed to the doctor. I drove to the clinic in tears, barely able to press down on the clutch to change gears and sat in the waiting room grimacing in pain, tears streaming down my face. The doctor of course was very sympathetic but since most of my symptoms involved my lower back, left buttock, left hip and left thigh, rather than investigate the fact that my pain seemed linked to my periods, I was sent for a lumbar spine x-ray and CT scan as he suspected a bulging disc.

Of course, these tests came back clear and showed no sign of disc bulge or other spinal issue. It was at this point, in late 2010, that he felt the persistent link between the pain and my period couldn’t be ignored and I was referred to a local gynaecologist for further investigation. It was at this time that he also suggested endometriosis may be the cause. But like many women, I hadn’t heard of it before. By now, things had worsened to the point where on the second day of my period I would feel a wave a nausea, begin vomiting and end up curled up in a ball on the floor crying out in pain. If I needed to have a bowel movement, I would be in immense amounts of pain and often could not stand up from the toilet with my husband needing to come and help me. On these days walking was almost impossible and I would end up at the emergency room being given Panadeine Forte or Endone and placed on a morphine drip until my pain levels stabilised and I was able to return home. Of course, all of this was extremely draining and I would need time off work to recover.

As I waited for my gynaecologist appointment, I spent one night every month in the emergency room, and I also developed a limp to compensate for the pain that was beginning to occur more regularly. It all had a negative impact on my mental health. Finally, I was seen by the gynaecologist in February 2011 and he booked me in straight away to have laparoscopic surgery to investigate and to remove endometriosis if it was found.

I began to research endometriosis: it’s causes, treatments and anything else I could find. I also spoke to different health professionals about it—all so I was prepared in case there was a positive endometriosis diagnosis.

In March 2011, the day of surgery came and I was hopeful that this would be the end of my pain-filled life but oh, how wrong I was! Everything went well during the laparoscopy, I recovered and returned to work after two weeks off. I had a follow-up appointment shortly after and it was at this time that the truth of how this disease was impacting on my body became evident. My gynaecologist said I had one of the most severe cases of stage four endometriosis he had ever seen and that it was beyond his skill base. He apologised for not being able to assist me and gave me a referral to an endometriosis specialist in Melbourne.

Thankfully the wait time wasn’t long and I was able to travel to Melbourne to find out what my options were and how we should proceed from this point on. I was sent for an internal ultrasound, was given many examinations and was advised that another surgery would be needed. I was also informed that my bowel was most likely involved so I would need to consult with a bowel surgeon before I could be booked in for my next surgery. During all of this I was still ending up in hospital each month and the disease was impacting greatly on my ability to work and live a ‘normal’ life.

Finally, in May 2011 I was admitted to Epworth Eastern Hospital in Melbourne to have excision surgery and either a bowel disc resection or a full bowel resection. To say I was nervous is an understatement. I didn’t know if I would wake up to find out if I’d had keyhole or open surgery or if I would be fitted with a stoma. After many hours in surgery and a day to sleep off the anaesthetic I was advised that keyhole excision surgery had been completed including a bowel disc resection. After a very painful and uncomfortable five days in hospital, I was able to return home to begin the eight-week recovery. It was not a fun and relaxing time off, I was in a lot of pain, I could hardly eat, I was nauseous and walking was difficult. Thankfully each day saw small improvements and by the end of the eight weeks I was starting to feel more like my old self again.

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