A mum was left in 'unbearable pain' and battling PTSD after she was diagnosed with a rare tumour in her BUM just two months before her wedding day.
Lauren Jennings rushed to hospital in June 2019 after experiencing searing pain and being unable to walk or sit upright. She was left shocked after she was diagnosed with a rare tumour known as a sacrococcygeal teratoma (SCT), that usually affects babies.
The mum-of-two was told she had a huge mass at the base of her spine and needed surgery urgently - but said she felt she 'couldn't' fall apart for the sake of her twin boys Jack and Freddie, aged just two at the time.
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"At that moment, everything else just fell from my mind and all I could think about were my twin sons," Lauren told NeedToKnow.Online. “I couldn’t leave them without a mother and I couldn’t fall apart. It was almost like I didn’t give myself time to get upset because I felt I needed to stay strong and fight whatever was headed our way."
Due to the rare nature of the disease, Lauren was scheduled for her operation with one of 'only two surgeons in the UK able to perform it' in July that same year.
At the time, she was planning her wedding, with the big day just two months away.
The surgeon removed part of her coccyx, which had previously become deformed but her bowel was punctured during the operation, which caused an infection. The mum was forced to to spend the next few weeks recovering in hospital.
Lauren said: "My hen weekend was cancelled due to my operation, which was devastating as I felt as though the tumour and operation had taken so much from me already."
She said her wedding was a 'happy occasion', but was 'overshadowed' by the surgery, which had left her feeling exhausted and with an open wound.
For a long time, Lauren also felt burdened by a strong sense of guilt for not being as able as she once was. She said: “At times I thought about how unfair it has all been.
“I am heartbroken that my children do not remember a life when their mother was well and not in pain, with a walking stick – but I try to focus on the positive and I’m thankful that my experience has allowed me to see life in a different light.”
It took almost a year for the mum to finally start feeling like herself but while her body had recovered, her mental state was a different story – with Lauren eventually diagnosed with PTSD.
She had nightmares about the tumour returning and tragically, it did. She said: "My anxiety was at its peak as I was so worried I would have to go through another operation.
“I was having recurring nightmares of waking up in the middle of surgery, unable to scream. After a routine MRI scan in August 2020, my worst nightmare came true – they had found another, bigger and much more serious, tumour.”
The mum had to undergo a coccygectomy – removal of the tailbone – and feared she may need a colostomy bag but thankfully, it was not required in the end. Due to Covid restrictions, she had to spend 10 days recovering in hospital alone, which she said was 'incredibly lonely'.
"The recovery was my hardest yet; a year later I was still on a high amount of pain medication and struggling with intense exhaustion. Even now, on my darkest and most painful days, I find it hard to rebuild myself and feel worlds away from the person I was just over two years ago.
“I have been forced to come to terms with the fact that I’ll never be that person again.”
Since her surgeries, the mum has also had to undergo pain injection procedures to "kill" nerve endings that left her with chronic pain following the coccygectomy - a procedure that, her doctor confirmed, is rarely performed unless used as life-saving treatment.
But there has been one positive outcome from her experience. Lauren now wants to help others who suffer with SCT – or know someone who has it. She quit her job as a personal assistant and is now training to become a child therapist.
Lauren added: "My experience has taught me that so many babies go under the operation to remove an SCT at birth. Many do not survive but the ones who do usually suffer with chronic pain in their lower back from the surgery.
"It made me think how much the pain has affected me as an adult and I cannot imagine how this must be for children. If I can raise awareness that saves a tiny baby, help support a family who have lost a baby because of SCT or support a teenager who had the surgery and is suffering, then my experience will be worth it."
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