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The Process to my invisible illness and final diagnosis: ACNE Part 3

Hi all, welcome back to the reality of unseen illnesses blog, sorry it has taken me a while to write the third part of this story, I was currently bed ridden and detained in a hospital bed for a week with no laptop or energy to be able to write about it, but that’s a whole other story in itself which I will write about shortly after this one.

In part two of The Process to my invisible illness and final diagnosis: ACNE, I had just discussed and shared some of my experiences whilst being at Monash for a few months, having numerous neurological tests done, only to find minor nerve damage in my leg but never able to find the cause. Which led doctors to the conclusion that it might be a psychiatric illness, something called Somatoform disorder, which is : A group of psychological disorders in which a patient experiences physical symptoms that are inconsistent with or cannot be fully explained by any underlying general medical or neurologic condition. Or in layman’s terms it means : That I was perhaps not dealing with an underlying psychological issue, such as depression etc, which then caused a physical reaction in my body such as PAIN!

This meant that these health professionals were ready to just transfer me off to the Mental Health team to a program called ‘Stepping Stones’, which was basically a Mental Health Institution for Teenagers and Young Adults. (I know I am re capping on some of my previous post but it is just to help the flow of the blog.) I remember being pushed in a wheelchair having a tour of the ‘Stepping Stones’ ward, clothes packed and I even manage to have my own room, but something just felt off to me, it felt weird, I just knew that in my heart I wasn’t suppose to be there. In that very moment, that is when something started to change, a fire started to burn within me, I knew I had to start doing something to help myself, I had to start believing in myself again and thinking positively. So I opted for out patient psychology, which was better for me anyways as the Psychology offices were located in Frankston, which was literally down the road from where I was living at the time which was In Karingal, in Victoria. It was an amazing experience within my body, it was like as soon as I started to believe in my self, despite still having the pain, I was suddenly able to walk by myself again, dress myself, go back to school and continue to do year 11 and 12.

After a few years of doing okay, my mum and my sisters decided to move to Sunny Queensland as all of my mums side of the family was already living up there. I decided to stay in Melbourne and finish my VCE (Or OP as the Queensland folk call it), because I had missed most of Year 11, I chose to do Year 12 over two years and that was the best decision I ever made. I was living in Melbourne with Kat’s mum, whilst Kat was living at her dads house so we still saw each other pretty much every weekend. I think living away from my family even though I missed them gave me a sense of growth and responsibility, I was now fully looking after myself and had a new sense of life.

However things started to go a bit pear shape again when I turned 18 as the Mental Health outpatient psychologist that I had been seeing were only for Young Adults and I had to see and try and pay for an adult one myself living by myself I had like minimal to no money to pay for these things and of course their was some relationship issues at that point in time. After a few years of constant health professionals telling you its in your head you, a part of you starts to believe it. So now I was anti depressants that didn’t really do much other than make me gain weight and made me sorta sleepy, which just made me feel more depressed. So once year 12 for the second time was over , I decided to move up to Queensland and be closer to my family knowing that Kat was going to move up within the next few years two.

Once settled into Queensland life I started noticing and experiencing symptoms in my abdomen, I was either constipated, or had bleeding or  other weird bowel movements and was experiencing excruciating pain in my abdomen. So I went through the series of my normal steps, find a good GP in Queensland that my mum recommended, he ordered some normal tests, such as bloods, urine, stools and then when I was still having problems he ordered a bit more things like ultra sounds, CT’s. When they came back normal, he referred me to specialists and surgeons who then said it may have been irritable bowel syndrome, so I changed my diet, when that still didn’t change anything, they sent me to see a surgeon again and her team, then referred me to a pain specialist.

So after a few months of having multiple health professionals look me over and go to the usual you are in the “too hard basket” it “must be in your head” , I was referred to a wonderful pain specialist who goes by the name DR. Heidi Feberwee , who was someone that was able to look beyond the obvious type of answers. I still remember my first meeting with her, I was running late, so I literally only had 10 minutes with her in her office as she was extremely busy. I remember sitting down with her discussing my symptoms, where about’s my pain was in my abdomen, she told me to lay on my back, pressed on a few places in my abdomen, said where I felt the most pain, she told me to get back in a chair, looked me in the eye and she said “I think you may have something called ACNE” and I was so confused , started touching my face, looking for pimples, I was like ” What are you talking about I don’t have ACNE?” She laughed and said ” No, I think you have something called Abdominal/ Anterior Cutaneous Nerve Entrapment disorder, which is when : Anterior cutaneous nerve entrapment syndrome (ACNES) is a condition that causes chronic pain of the abdominal wall. It occurs when terminal branches of the lower thoracicintercostal nerves (7-12) are ‘entrapped’ in abdominal muscles, causing a severe localized neuropathic pain that is usually experienced at ventral portions of the abdomen. It is frequently overlooked and unrecognized, although the incidence is estimated to be 1:2000 patients.[1]     

She then told me to research it , So I did, she explained that the only treatment was a nerve injection ablation, which basically means burning of the nerves. She booked me in for that treatment, I remember going in for my first treatment/ operation and freaking out because it was the first major thing I had ever had done. During the first half of the procedure you lay awake, the anesthetist gives you a local and Heidi puts a numbing cream over you abdomen and then inserts a giant needle into your abdomen, using an ultrasound machine she moves the needle around till she pin points the nerve, they test the area with a type of an electricity thing and once I can feel it quite a lot on a minimal setting, the anesthetists up my dose and put me to sleep, they then continue with the ablation of nerves and send me to recovery.

It was amazing after the injections, I went home a bit bruised, but once the bruising went away I was FINE! It was like a miracle, suddenly all the pain went away from my abdomen, it also went away from my hands and legs, I started living a healthy life again, losing weight, didn’t rely on pain meds and for the first time i believed in myself again. It wasn’t in my head, it never was, we just were looking in the wrong spot.

I guess the moral of my story and so many of my stories is you know yourself, you know your body. TRUST YOURSELF !!!

Lauren x

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