You know those severe cramps you get after eating something dodgy? Well add that feeling to someone continually stabbing stiletto heels into the lower part of your stomach. Got that? Then add Edward Scissorhands sitting inside your stomach waving his hands around. Then add searing pain that travels down the front of your thighs to your toes. Add sweat. Add inability to speak. Add inability to cry. Then make that combination of feelings last for 6 to 24+ hours.
And, that is what Endometriosis pain feels like to me. I've been hospitalised numerous times for pain management, and usually only find relief after being put onto a self-administering morphine pump. I've had eight operations to remove it, and am now so riddled with scar tissue and nerve damage that there is nothing more they can do from an operative point of view.
Not even removing a good portion of my innards will remove the disease, its too extensive.
My most recent operation has been hailed as the "deepest Endometriosis excision ever performed". Photographs and video footage have since been shown worldwide at medical conventions. The Doctor who performed the operation has published his findings in countless medical journals. Some of the endo he removed was more than 20 years old.
But, if it had been in there for 20 years, why hadn't it been removed in one of the earlier operations, I hear you ask? Because they didn't have the technology or skills to do it back then.
I've seen the photos. The really old Endo looks like slimy black tar. The newer stuff ranges from light pink to blood red. I've got a great photo from halfway through one of the ops about 6 years ago. On one side is the hideous endo in all its endo-ish glory, and on the other side, you can clearly see the organs that its been removed from.
I'm now under the care of a Pain Specialist because its inoperable, and they need to figure out a plan so that I can manage the pain myself until I head off to heaven.
Last night I had an excruciating episode, so bad that I considered going to A&E for the second time in a fortnight. Just as I was at my wits end, I got in touch with the Pain Dude and via his suggestions (then me upping the dosage a bit) we eventually managed to make the pain bearable enough that I could remain at home.
Today, I feel exhausted, and as though I did 5,000 sit-ups yesterday. The aching never goes away, but I'm used to it now. Its the excruciating episodes like last night that wear me down, physically and emotionally.
I can't figure out how to finish this blog. I just sincerely hope that none of the women in your lives ever have to suffer through it as I do.
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