Saturday, February 26, 2011

Suffering in Silence

How many women are out there suffering in silence?

I stood in the shower this morning and as the tears began to flow I wondered just how many of us are out there suffering today. In silence. Alone.

Endometriosis is a diagnosis that in my opinion is thrown around far too often. Every Bessie, Fannie and Jo have been diagnosed with having 'endo' from as young as 14 (or less) and are told 'you will struggle to have children' of these Bessies, and Fannies, and Jo's - how many have been correctly diagnosed through diagnostic laparoscopy? How many of these go on to have child, after child and still now sprout on that their children are miracles because you know, they had endo and you know that makes it difficult to have kids a Dr told me when I was 18. I'd suspect that many of these woman have never had a laparoscopy therefore never getting a real diagnosis. I'm not saying that these woman suffer any less, nor am I suggesting that they don't have real discernible issues with their periods or even that they don't have some form of endometriosis. They probably do. I just feel the term is thrown around a lot and because of this, endo can sometimes be seen as "the new black" and not taken as seriously as it really is (heck before I was diagnosed, I was a nay-sayer and sceptic on these poor woman and though I am to a degree still and while I do have empathy for them I feel that there should be more definition between the stages and severity of this disease)

What I don't feel is discussed is the severe cases. Difficult cases like mine which HAVE grown back within 5 years of excising it. Difficult cases like mine where it does interfere with fertility. Difficult cases like mine where multiple extensive operations are performed. Where does it end?

Why is it the severe cases are left undiscussed?

How many of us are out there, like me... sobbing in the shower because we aren't heard. We aren't seen. We are constantly living with a disease that is not discussed openly and when it does get mentioned you usually get a plethora of comments in return

"my sister has it" said sister is 18 and has really bad period pain

"my mum had it" said mother had 2 kids and a surprise pregnancy late in life.

"my friend had it" said friend has 4 kids and was told she'd never conceive.

"I have it" said person has never had diagnostic laparoscopy to confirm this.

It seems there are a lot of woman out there who do have it. Diagnosed or not. But where are the girls who have operation after operation to remove, dispose, cure? Whatever happens to them? Are they like me, alone in the shower, crying because they are not quite recovered from one operation and looking down the barrel of another? Are they just getting on with it and dealing with the pain because that's what they were taught to do when they were teens.

Where the fuck do we draw the line in the sand and say 'enoughs, enough!' How much pain must we endure before this is seen as a serious fucking disease.

Perhaps statistically I am alone. I've been feeling alone for some time now.

In terms of fertility, I am on the fence. I did NOT fall pregnant easily, yet I did NOT need IVF to conceive our beautiful girl (and for that I am eternally grateful, hats off to those wonderful woman cycle after cycle, I had it easy in comparison) 

In terms of endometriosis, again I am on the fence. I am not classed as mild and a subsequent easy surgical fix, although I am on the lower end of severe it's not as severe as some ladies who are riddled with it and have it all over their ovaries, bowel etc. Mine is localised. Mine is classed as Stage 4/5 (well the surgery is at any rate) but it is on the lower end of that stage. I don't feel I belong in that really severe case class, nor do I belong in the mild stage.

I'm adrift and there is no one support group that would take me on.

 So I cry alone. As the pain inside pulls and scrapes deep in my pelvis, my bowel spasyming, back aching I give in to the tears and I cry alone.


Lea said...

:( I have tears for you babe. Big hugs. My shoulder is here for you when you need it xo

Emmsie said...

You are an AMAZING woman who has inspired many people

The Courtsy's said...

You may feel alone, but we are all here for you Car. I am so sorry you have to go through this xxxx