A Journey to Diagnosis - Part 2

By Amanda Burgess

Sadly, after all of that I was still experiencing some pain with my periods and upon post op examination it was determined that due to the severity of my condition either some endometriosis had been missed or a new deposit had formed. I was advised to begin trying for a baby as it may help my body to adjust and reduce my symptoms, although my specialist was sure to inform me that it would not cure me of endometriosis.

I no longer needed to visit the emergency room regularly but I was on a rotation of Oxycontin, Endone and Panadeine Forte to try and manage the pain, which had become a daily occurrence. I was tired constantly, couldn’t make plans because I didn’t know how I’d feel a day from now, let alone in a week or a month. My life was ruled by this disease. I tried acupuncture and Chinese medicine, which had some positive effects but didn’t get rid of my pain. I went from exercising several times a week to struggling to get out and walk regularly because any form of exercise left in in crippling pain. I was anxious, depressed, suffering chronic migraines and struggling with the fact that I wasn’t falling pregnant.

Of course, we went through the fertility testing and were told that although everything looked ok that due to my disease, our only option was probably going to be IVF. I knew I couldn’t put myself through it mentally, emotionally or physically and we decided if it was meant to be it would be and if not, we would look into adoption in the future. It wasn’t until we’d given up hope and had stopped actively trying to conceive that it happened. In January 2013, we found out we were expecting and, in the September, we welcomed a beautiful, healthy baby girl!

For seven months all was going well until I began to feel extremely unwell. It was found that my iron levels were dangerously low and my hormones were out of balance so I was advised to stop breastfeeding but to be prepared for my period to return along with the possibility of my endometriosis flaring up again. I felt great for around six months or so, with very little pain and fairly ‘normal’ periods but as time progressed, things took a turn for the worse.

By the middle of 2015, I was again relying on pain medication to function and my pain was now a constant in my life. It was there 24/7 and was taking a terrible toll on my body, it also took a toll on my marriage and sadly, my husband and I parted ways on good terms. By this stage I was so drained I needed to nap every day and caring for my daughter was difficult as my aches and pains made every little task so much harder. The culmination of everything had lead to me being diagnosed with post-natal depression back in 2014 and then in late 2015 I was referred back to my specialist in Melbourne where we discussed my options yet again. I left this appointment confused and unsure of the decision I should make.

My specialist had given me three months to try the contraceptive pill again as a way to manage my symptoms before making a decision about whether or not to undergo more surgery. The pill did nothing to help and I was virtually bedridden due to the intense and crippling pain I was experiencing. So, at the follow-up appointment, at the age of 35, I made the difficult decision to have a full hysterectomy despite knowing that it would not cure me.

On 22 December 2016, I was admitted to Royal Women’s Hospital Melbourne and underwent endometriosis excision, cystoscopy and a full hysterectomy with only my right ovary preserved. I was advised that they had removed all of the endometriosis they could find except for a nodule that was present on the bowel—there was no bowel surgeon present in the operating room. After two days in hospital and another eight-week recovery, I was feeling fairly good and was optimistic about my chances of a life without pain.

Six months is all it took though for my pain to begin to return. It started as small twinges that I brushed off as nothing but as each month passed my pain slowly increased from a day here and there to constant 24/7 again. I wish I could say that since then things have improved, that I’ve found some miracle treatment that has given me back a ‘normal’ life but of course I can’t. I am back on prescription pain medication, taking high doses of daily Provera, regularly rely on crutches to walk and praying that the diet changes and regular gentle yoga stretches will make a difference. It’s now mid-2018 and I have a month-and-a-half before my next specialist appointment. Hopefully, I can find something that makes a significant difference between now and then because if not I may require yet another major surgery. This time I would be looking at a full bowel resection which of course means the risks increase as do the chances I would end up with a temporary stoma or colostomy bag. It is scary, it is crappy, it is something I wouldn’t wish upon my worst enemy but still, I will fight on.

The one thing that breaks my heart in all of this is that on my worst days, my daughter becomes my carer. At four years old she brings me my ice pack, helps me move between my bed, the couch and the bathroom, makes sure my crutches are within reach, gives me my medicine and gets my drink bottle for me. No child should have to do that, no child should have to be stuck at home all weekend because their mum is in too much pain to walk, let alone drive. Yet she is an amazing, kind, caring and nurturing little girl and she gives me a strength and will to push through that I never knew I had. If it wasn’t for her, I can honestly say I could have easily given up a long time ago and thrown in the towel. For her though, I will continue be the resilient warrior she needs and show her that no matter what life throws at you, you can succeed and live your life to the best of your ability.

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