Friday, 14 February 2014

Embarrassing bodies ~ the hospital - I'm not showing you my butt edition !

I've spent the last 3 days in hospital recovering from surgery for my embarrassing body.  I had three soft tissue tumours removed related to a genetic condition I suffer from ; not related to Breast cancer.


I am not talking specifically about the TV program "Embarrassing Bodies" which aims to dispel myths surrounding medical conditions deemed to be ‘embarrassing’ - many people laugh at the very idea that people would be prepared to go on TV and yet choose not to see their regular doctors.

I do like that EB demonstrates that there’s no need to feel ashamed because actually, we’re all the same ! or are we ?

There is quite an element of shock value in the show's production , and I am sure they genuinely do help some people with visually shocking and personally mortifying conditions where they have failed to receive help elsewhere. 

It still bothers me. 
The ridicule factor.

I have a very embarrassing body. I didn't know why - for half of my life - I had strange little lumps and cafe au lait spots aka birthmarks (see the brown birthmark next to my dressing). I wrote about it - Neurofibromatosis NF - here and how I discovered the cause of my embarrassing body. I was bullied at school , ridiculed and felt the stares of strangers. 

Last May, I saw a local surgeon to have a large neurofibroma (soft tissue tumour) deep in my inner thigh , removed. He wouldn't do the surgery because it was complex and advised me to see a specialist in Sydney.

The consensus is to leave lumps alone unless they cause pressure/pain or other damage by structure /organ or nerve compression or malignancy . I waited till I saw the surgical oncologist (Breast Cancer surgeon) in January and he agreed to do it - 3 weeks later (ie last Wednesday). I was starting to get increasingly sharper pains in my lower leg and ankles, numbness plus a pulling sensation when I walked /ran or moved in any way. I am unsure how much of that will change but at least it won't get worse.

The Surgeon told me before surgery he would have to make a large incision to identify where the nerves, veins and arteries originated. The tumour was about fist sized and growing on a superficial nerve. Thankfully, there was no muscle involvement , so he could move the muscles aside and not cut them. I wasn't surprised at the length of the incision. I'm hoping it means a shorter recovery and back to running sooner.

I also decided it was time to have two other smaller tumours removed , located at the top of my right and left buttocks. I have always been embarrassed with people seeing my 'butt ugly butt'...a morbid fear of accidentally showing my 'plumber's crack'.

Haha - how many people see your bum you ask ? - Change rooms for one and well mainly health professionals and over the years when I've been in hospital I was asked about them. 
"Oh , what's that " "what are they ?"
They were slow growing but (no pun intended) getting bigger. I was also getting pinched on the bottom by the brutal hinge crack between the toilet seat and lid when I sat .

Daily , I struggle with the cosmetic side of NF because I have thousands (not an exaggeration) of small nodules/skin tumours/ ugly bumps & soft lumps and freckling (skin pigmentation). My body seems hideous to me at times; clothes cover up most of the uglyness.There are other people very significantly affected by Neurofibromatosis so I don't whinge  much !

I have small soft lumps on my face,  more noticeably and others surfacing . Click here to see a picture of elderly woman's back severe NF 'skin'. There is a huge range of severity and manifestations even within the one family and it varies from individual to individual. (They call it variable expressivity).  


Maybe , one day I will have further surgery for the facial lumps. I had the thigh tumour removed because it was causing discomfort and pain not embarrassing. It was mostly unseen though it did protrude slightly when I stood in profile. I'll have an awesome battle scar now.

In Australia - the Children's Tumour foundation is a non-profit ,charitable organisation that brings  hope , awareness and education about Neurofibromatoses. They struggle to get to the mainstream media. Sunday was the Cupid's Undie Run. (Cupid’s Undie Run is a kilometre-and-a-half (ish) run in your bedroom-best on Valentine’s weekend)

I was paddling or else I would have done the Undie run ...in my running kit mind you !

The Children's Tumour foundation aim to better connect those afflicted with helpful resources to lead more productive and satisfying lives.They give support and offer hope.

I know whatever challenges come my way I have the ability to meet them, my embarrassing body doesn't define me. On a day that beauty and love make the world go round I wanted to share that I know God loves me as myself and so I should love myself too.

I need to let that inner love and self acceptance spill over and not worry what others think of me.

Anyway, I am recovering well, my butt is the sorest bit and my leg when I move ; the Endone and Panadol takes care of most of it.

Now the hospital ! It is as good as it gets, the food is exceptional, the staff are prompt to help you and they have free wifi (limited unfortunately).

What have you got planned for Valentine's day ?


 

Comments (7)

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Oh no Trish, as if you haven't seen enough hospitals on the inside these past years! I hope you recover quickly and you will be less troubled, I am so sorry to hear of your battle with NF. My friend's daughter has it too and it is horrible :( Looking forward to reading you are up on your feet (no pun intended!) very soon. Simone
You have a brilliant attitude girl! I hope you recover quickly and it was all well worth it. Hope hubby is spoiling you in hospital!
Oh Trish, you've had more than your fair share of physical issues and hospitalisations. I'm sorry to hear you're dealing with this too, but here's hoping you get some decent relief after this procedure heals. I have all sorts of things going on with my skin, you name it, I've probably had it, have it, or going to get it. I have my checks regularly but luckily the procedures have all been minor. Take care xxx
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Wow! Sorry to hear but I really hope this brings you some relief and helps both physically and cosmetically. Hugs to you for spending your V Day like this... we're on the couch watching YouTube so things aren't too much more exciting here - I am about to crack open the icecream though! Take care xx
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What a journey you've been going through. Thanks for sharing your story. I scrutinise every imperfection on my body, but how much more difficult it definitely it for you. Have a smooth recovery!
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Wow that was quite an eye opener - I haven't heard of this before so thanks for sharing. I do hope you get some relief, I can't imagine the pain every day and feeling self conscious about it also. I hope it makes running less painful for you down the track. x
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Anti Aging Clinic · 372 weeks ago

breast, body and cosmetic surgery. A regular trainer to fellow colleagues he is renowned for his lecturing on all aspects of his profession
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