Thursday, March 3, 2011

Becoming informed

Endometrial nodules in the Pouch of Douglas, uterosacral ligaments, and rectovaginal septum are generally larger and deeper than ordinary implants. They do not usually respond to drug treatment so they must be removed surgically. Because they are difficult to reach, there is a danger that the bowel may be damaged accidentally during surgery. Therefore, the surgeon must be experienced at laparoscopic surgery. Cutting (excision) techniques are usually used rather than burning (cautery or diathermy) techniques.
The above quote I found on a fellow endometriosis sufferers online diary. As I re-read it was like a like a light-bulb moment, a-ha! I am THIS.

My endometriosis as mentioned previously has always been in the Pouch of Douglas area & it is localised and for that I am eternally grateful. However as it says above
"generally larger and deeper than ordinary implants”.
This sums up why my original surgeon used the excision technique rather than burning (many people IRL questioned why it wasn't just burned away) at the time of my first operation, to be totally honest - I wasn't concerned or focused on my health or the endo. It was THE REASON. The only reason I was NOT falling pregnant and I focused all of my energy on getting myself pregnant. My endo was a poor second to that elusive pregnancy and I just dealt with it. I had the ops, I recovered, I moved forward to the future and concentrate on getting myself pregnant. I was one of the lucky ones.

Once I achieved pregnancy the endo became backseat. Yes I had it. No it didn’t bother me apart from chronic pain each month. I’d lived with it for years - it was to be expected you know?  

So, why now? Why am I struggling so much with the thought of a 2nd op? I think it’s because this time around due to circumstances out of my control, babies are not the priority (though I so desperately want to add one more babe to our little family, just one. I’m not greedy… but that is another story – I will get to it eventually)

This operation scares me more, perhaps because I am older and much wiser than my 28 year old self. You know that 33 is so old & ancient  (or so the young un’s at work inform me!) The knowledge that I am in the percentage of woman who have this disease removed only to find it returns within 5 years. The emu (aka head in the sand) in me wanted to believe once it was out it was gone for good. I mean truly, my specialist didn’t make a big deal of it – why should I? I was only a moderate to severe case. I wasn’t classed as severe. I even think my last op was only classed a level 3 excision.

Yet here I am, a statistic – it was removed and though the pain never went away (if anything it was actually worse)

To make matters worse, I also got an all clear at the beginning of 2010. I was cured. I was shocked. “OMG pregnancy really DOES cure Endometriosis… who’da thunk it”

Not to mention really embarrassed that I had gone through an operation only to have nothing found. I started questioning whether my pain was real, or had I imagined it. Maybe I was too busy popping pills when I really needn’t of have. My specialist said that sometimes woman can have all the symptoms remain, but no active disease. She said this is parts of the disease that has them stumped. Suddenly it had gone from I have endometriosis to a phantom pain that had me questioning whether I was just being a big fucking girl. 

For the next 6 months, I just got on with it. Crippled monthly with pain, thinking it was all in my head and thinking that I should just suck it up princess. I even tried going cold turkey on the pain relief pills… WTF was I thinking – big mistake BIG! Then I found the lump (aka the nodule) of course it couldn’t be endometrios. Not again. No way was I going through another operation only to find out it was all in my head. I put it down to scar tissue from the operation and put it out of my mind.
These things have a way of niggling at the mind. Worrying. Fuck me, it was a bloody lump (and quite a sizeable one that I could feel) so I finally took myself to the GP and sure enough I walked out of there after 15 minutes with the duck bill with a bill for $90 and a referral to my specialist.

Now more than $1500 later, it’s been confirmed that the pain is NOT in my head. The endometriosis is back. This time with a vengeance and as my specialist read through my notes over the past five years she finally admitted that it was deep last time. Very deep. She remembered peeling back the layers and it kept on going. I should have cottoned on when it turned out to be a 3 + hour operation (though I had focused on my bursting appendix at the time, the endometriosis really paled in comparison to that story ;)

This time I am wiser and under no such illusions that it will be easy. And perhaps this is the very reason I am scared. I’ve been told that the operation will involve scraping and peeling the scar tissues on the sides of my pelvis (?) area then they will work their way down toward the nodule, cutting and peeling as they go. This time I know it’s deep, very deep, perhaps deeper than the last operation.

Deep and extremely painful. Finally the pain I have been feeling has a name once more. It is endometriosis and it fucking hurts.

Of course this just brings about so many worries about my immediate and long-term future. I will always have this disease no matter if it’s active or not, and I’m so over it. The thought of a future with operation after operation scares me to drink (which only worsens the endo symptoms) I truly wish it would just fuck off and leave me be.

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