Lauren’s Story

The beginning

In June 2019, I was overcome with terrible lower back pain. I was referred to a spinal specialist who then referred me to a gynaecologist and after several MRI scans, it was decided that the problem was located between the bottom of my back and my pelvis. After yet another MRI scan, I was then referred to a pelvic consultant who delivered the devastating news that there was a rare tumour found at the base of my spine, called a Sacrococcygeal Teratoma (SCT) and that I needed surgery to remove it and it would need to be tested for cancer. A colorectal surgeon would be taking my case on from that moment.

A Sacrococcygeal Teratoma (SCT) is a rare type of tumour known as a teratoma that develops at the base of the coccyx (tailbone). It is the most common neonatal (newborn) tumour, affecting about 1 in every 40,000 babies born. They are exceedingly rare in adults. The tumour is usually diagnosed with an ultrasound exam and the cause of these tumours is unknown. 

Surgery

My first major operation was performed less than two months before my wedding – I spent a week in hospital recovering from the tumour being removed – part of my coccyx was also removed as it had become deformed and had punctured my bowel – so that also needed to be repaired.

I spent the next six weeks recovering and planning my wedding – my hen weekend was also postponed due to my operation which was devastating. I received the ‘all clear’ for cancer a couple of weeks before my wedding, which was a huge relief for me and my family. I got married on the 19th September 2019 and although it was a happy occasion and a beautiful day; I could not help but feel that it was slightly overshadowed by my surgery. I felt unwell on the day and spent my wedding with an open wound.

We went on our honeymoon in October 2019, although there were risks and concerns – I was determined not to let my illness or operation take something else away from me. We spent two weeks in South Africa and Mauritius, with my husband packing my wound. I returned to my job as a PA in London in November 2019, I was feeling unwell and one day nearly collapsed at a train station. After an MRI scan, it was discovered that I had an infection from my recently healed wound and my organs were beginning to shut down – I was booked in for an urgent operation in December 2019 to drain the infection and had another few months of recovery ahead of me.

Recovery

I was feeling better by April 2020 and although, due to COVID -19, I spent my 30th birthday in lockdown, I felt more like myself again. However mentally, I felt like I was constantly looking over my shoulder and It was around this time that I was diagnosed with PTSD from everything that had happened. It was then that I decided to seek help in the form of a therapist.

My worst nightmare came true after a routine MRI scan in August 2020 – another tumour had been found and I had to go through another major operation – this time I was allowed no visitors due to the global situation. After my wound was once again cut open, I also had a full coccygectomy – there were huge health risks and a risk of a colostomy bag as it was the third operation – I was terrified.

Thankfully, a colostomy bag was not required but I spent ten long days in hospital, 23 hours a day mostly alone in my hospital room, I achingly missed my husband and children and the thought of surviving another long stretch of recovery seemed imaginable.

Five months later, 16 MRI scans and countless tests, examinations, and appointments since the beginning – I am thankful to be alive. I have found a support group of people who have been through what I have and parents of children who have or are going through the same. Recovery has been much harder the third time around and I still struggle with back pain and exhaustion. I have been writing a blog about my discovery, surgeries, and recovery to raise awareness of Sacrococcygeal Teratomas to create a positive out of a scary and life changing experience.

You can read Lauren’s blog here: What a pain in the a*** (timetotalkaboutsacrococcygealteratoma.blogspot.com)

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