Tag Archives: #abdominalcutaneousnerveentrapment

Not always a Happy Ending

Welcome back fellow readers, bloggers to the world of The Reality of Unseen Illnesses,

Sorry I haven’t written for a few months I have been confined to white tiled rooms we call hospitals, going through the same cycle and struggle of fighting with Medical Health Professionals.

Let’s back it up a bit my last story was the long journey I had taken to discover I had an Illness called Abdominal Cutaneous Nerve Entrapment Disorder (Here is a quick re cap on what that disease is :  (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] )

It was an amazing woman, a woman who looked beyond the norm and discovered that this was the main source of my chronic pain, a wonderful woman named Dr Heide Feberwee
Gold Coast Persistent Pain Management Service
Suite 3, Campus Alpha
2 Investigator Drive
ROBINA QLD 4226
Phone: (07) 5668 6825
Fax: (07) 5680 9539

and after having the  (RFA) ablation surgery I was pain free for quite awhile. However because I am only a young 22 year old my nerves grow back quite frequently and I usually have this operation done every 3-6 months.

So lets fast forward a few months to June 2016, I woke up the same as every morning and went through my usual routine and whist normal 22 year old’s morning’s usually consist of breakfast and coffee, this is what my morning consists of 100g of Thyroxine for my under active thyroid (Hypothyroidism) , 1 tablet of inner health plus (because of all the antibiotics I have to take), Movical and Iberogast (to help soften the bowel and help the digestive system whilst on many Opiate related medications. Which is not good. BTW. PLEASE ONLY TAKE MEDICATION AS PRESCRIBED BY GP OR HEALTH PROFESSIONALS.)

So in June 2016 , I woke up and realised I had a very bad pain on my right side and at first it felt like that odd sensation before you need to urinate, when this appeared the pain became so unbearable that I remained in a crouched over position clutching my right pelvic side. So I went through the painful steps of organising a GP appointment, the GP sending me off to get a Pelvic Ultra Sound both Internal and External, and for a girl a first time Internal Pelvic Ultra sound is a bit uncomfortable. Transvaginal ultrasound is an examination of the female pelvis and urogenital tract (kidneys and bladder). It helps to see if there is any abnormality in your uterus (womb), cervix (the neck of the womb), endometrium (lining of the womb), fallopian tubes, ovaries, bladder and the pelvic cavity. It differs from an abdominal ultrasound as it looks at the pelvic organs from inside the vagina.

I had that done, got the results and was sent away with the normal anti inflammatory pain killers, but this didn’t do anything so hoped into mums car and drove to my second home ‘Robina Public Hospital.’  went through the usual cycle of explaining the same thing over and over again being pumped with pain killers, getting told there is nothing really wrong, organise another  round of ultrasounds and because of the pain killers the hospital pumps me with I end up having to have a catheter (“uretic catheter”:) draining urine from the urinary bladder as in urinary catheterization, e.g., the intermittent catheters or Foley catheter or even when the urethra is damaged as in suprapubic catheterisation. 

After a major 48 hours I finally ended up with a questionable diagnosis of Pelvic Inflamatory disease: (inflammation of the female genital tract, accompanied by fever and lower abdominal pain.) I was put on two types of antibiotics Flagyl

(Flagyl (metronidazole) is an antibiotic. It fights bacteria in your body.

Flagyl is used to treat bacterial infections of the vagina, stomach, skin, joints, and respiratory tract. This medication will not treat a vaginal yeast infection.)

and …

Doxycycline is an antibiotic that is used in the treatment of a number of types of infections caused by bacteria and protozoa. 

and whilst these medications for the two weeks in combination with strong pain killers did help this pain for a period of time. However because the side effects were so bad I almost considered just living through the unbearable pain. Some of these side effects from both antibiotics included:

  • Diarrhea
  • Nausea
  • Migraines
  •  Bleeding
  • Loss of appetite
  • and the constant feeling of not feeling 100%

 

So i guess where I am going with this story is that not everyone is happy ending, and I still have to fight to prove my illnesses are real only to end up with a MAYBE or Questionable diagnosis. The only good thing to come out of my stories is that I end up making wonderful friends at the hospital going through similar things to me so they are very understanding, so when you are feeling stressed, sick and alone please remember that you are not alone and that there are people out there just like you!

Lauren x

If you have a story about your invisible illness that you would like to share with me and the world please email : thatsteelmedia@gmail.com

 

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The Process of my invisible illness; To the final diagnosis: ACNE Part 1

Hello fellow bloggers and word press lovers it’s me Lauren and this is the story of the process I had to go through to finally get a diagnosis 7 years later.

In my previous post I discussed how I was diagnosed with Hypothyroidism, at the age of fourteen, just a quick re-cap:

“Hypothyroidism is a condition in which the body lacks sufficient thyroid hormone. Since the main purpose of thyroid hormone is to “run the body’s metabolism,” it is understandable that people with this condition will have symptoms associated with a slow metabolism. The estimates vary, but approximately 10 million Americans/Australians have this common medical condition. In fact, as many as 10% of women may have some degree of thyroid hormone deficiency.   Hypothyroidism is more common than you would believe, and millions of people are currently hypothyroid and don’t know it.”

I was put on a hormone replacement called Thyroxine, Sometimes called Oroxine. I was fourteen at the time and have been living on hormone replacements since and I seemed like a fine, happy healthy young girl again. I wasn’t as tired anymore, I was back at school, I was a healthy weight and suddenly all was right with the world or so I thought.

AND THEN I TURNED 16:

I had recently just transferred from South Oakleigh Secondary College, where I got bullied severely and moved to a school called Karingal Park soon to be McClleland College where my best friend Katrina was attending, which made the transfer a lot easier because I already knew her and her friends.

I always loved musical theatre from year 7, I made a promise that I would always be in school productions so I also made a lot of friends when I joined the Karingal Park school productions. However half way through production I ended up needing crutches because I had always grown too fast for my body that my knee caps would constantly pop in and out of place. It was always annoying because it would happen randomly and it just so happened to have happened literally straight after another cast member and he used to make claims that “I was copying him” like I had control over my body, and my invisible illness. This is one statement that constantly upsets me because people can’t physically see what’s going on in my body so they claim I have control over it like it was my intention to have my knee caps pop out of place and cause me severe pain every time I walked. Luckily the knee cap situation cleared up pretty quickly.

When it drew closer to the end of year Ten and the start of year Eleven I started noticing some more changes in my body, apparently I was really skinny, so skinny in fact that I almost looked anorexic, however I had no clue of the fact, as I believed I was a healthy weight for my age and I loved to eat.

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Lauren in Red (Left), Katrina best friend in Yellow (Right),

Although looking back at the images above you can tell that I wasn’t as healthy as I could have been. Then out of the blue I started experiencing severe stabbing pain within my fingers and toes, which then progressed to my hands and feet, at first I just thought these were growing pains as I was always growing too fast for my body. However within a week this invisible illness had progressed quite rapidly, the sharp stabbing pains that had been constantly occupying my hands and feet had suddenly progressed up through to my arms and to my legs and soon this sharp irritable unbearable pain had consumed my whole body. It got so bad to the point where I couldn’t walk properly anymore, I walked with my knees bent into one another, almost like I had polio disease. From not being able to walk properly my body was so ridiculously heavy, so mum made an executive decision to hire a wheel chair. When I wasn’t bed ridden or laying on the couch, I used that wheelchair to do everything and go everywhere, I even remember attending Katrina’s 17th birthday in my wheelchair.

It was the moment when my invisible illness started causing me more issues than not being able to walk, when I wasn’t able to bath myself, dress myself and even eat without needing the assistance of my mother or someone else, was when my family and I decided after many inconclusive doctor visits that it was time to go into hospital. I was staying at my grandparents house and they were close friends with a neurologist who worked at the Monash Hospital in Clayton, Victoria, So that was the hospital I was to attend.

 

In part two of this blog post, I shall discuss my admittance to hospital and the tests that I went through from what I can remember anyways and the next chapter to how I ended up with my official diagnosis of  Abdominal Cutaneous Nerve Entrapment Disease (ACNE)

Stay Tuned and Keep reading and if anyone has a story that they would like me to share on this blog please email to: thatsteelmedia@gmail.com

 

Lauren x

About the Reality of Unseen Illnesses blog

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Hi, My name is Lauren Steel,

Some of you may know me and some of you may not. This is a picture of me, one of the better one’s anyways. When you look up at this picture what do you see? A girl smiling? clean, healthy skin? This girl in the picture looks 100% healthy right?

WRONG!

This girl, me, Lauren suffers from many invisible illnesses such as Hypothyroidism, Abdominal Cutaneous Nerve Entrapment Disorder (Acne) for short, and just recently a Pelvic inflammatory disease. All of these invisible illnesses cause crippling chronic pain, the chronic pain can be so bad sometimes that it is a struggle for me to get myself up out of bed every morning and having to spend all my disability pension money on medical tests or prescriptions. What kind of a life is that for anyone? Let alone a 22 year old? and no this blog will not be used for complaint but more so for information or educational purposes. I know there are many people worse off than me , living with Cancer, or in severe poverty and there is awareness about that. I wish to make a change in this world, a change for people like me, I will stand up and be an advocate for unseen/ invisible illness that are not just in Mental Health, but also in the chronic pain department or every other part of unseen illnesses that do not get the education they deserve. It’s time to stop doctors and other medical health professionals from telling us that “it is all in our head” because they do not have the education and awareness necessary and accessible to them and to stop stereotyping us and putting us in the “too hard” basket.

Lets make a change!

I have learnt a lot since being diagnosed with different things from the age of fourteen, throughout this blog i shall go through my different illnesses one at a time.

If you too have a story about the reality of your unseen illness that you would like to share please  email to : thatsteelmedia@gmail.com

and i shall share your story on this blog.

Thanks

Lauren x