(05-01-2018, 12:49 PM)UCF Knight Wrote:

(04-25-2018, 06:10 PM)americus 2.0 Wrote: Finding out you have a chronic, incurable and treatment resistant illness is pretty darn devastating. Especially one that has no sub-specialty and the majority of specialists don't really know much about why women get it, the best way to treat it, etc. I've known about it for a couple of months but the reality has caught up to me. My poor husband.....it hasn't hit him yet. 

Some people say, "well at least it's not cancer." That doesn't really mean [BLEEP] to me. In my reality this is as devastating as cancer. I mean no disrespect to those here who are fighting cancer. I was pretty shaken when we originally thought this was cancer. Cancer is no joke, and neither is this.

I have never had any chronic physical problems in my 46 years on this earth. I have always been healthy without even trying, I've always had a lot of get-up-and-go, always the desire and motivation to go and get things done. So to tell me I have to possibly live with the pain, the chronic fatigue, the emotional roller coaster, the lack of motivation to do a damn thing, etc., for the rest of my life.....there are no words. I have a hard time getting out of bed everyday and it some days are worse than others. Less than a year ago I used a hose, a sponge and a brush/wand thing I use to wash my truck to literally wash the siding on our 14x60 foot mobile home because we don't have a pressure washer and I didn't want to rent one. Now, folding and putting away laundry is exhausting. Heck, just thinking about it makes my brain spasm. 

There is no cure for endometriosis. It is extremely hard to treat, and you're only treating the symptoms as it continues to get worse. Excision surgery is the gold standard for getting rid of it (though there is not a 100% guarantee it won't return some time in the future) but to find a surgeon who is willing to do it (if your insurance company will even authorize it) seems to be impossible. Sure, you can have the implants surgically burned or removed but that only gets the implants, it doesn't get the "root" so it definitely comes back with a vengence. They have to be excised. And doctors won't even consider surgery until they've exhausted more conservative treatments which are proven not to do a damn thing other than temporarily possibly stop the endo from spreading and possibly reduce inflammation of what's already there. 

I just don't even know what to say.

I pretty much get being consistently tired throughout the day as well.  I had a surgery a few years back and since then everything internally is out of whack.  The hardest part is the people around you think you're just being lazy when in reality they have no clue how you feel.  It affects my attitude as well.

Sorry you're dealing with it.  Hope it softens a bit over time.

Honestly, I was one of those people who didn't "get" why people weren't always motivated and on the go as i was. Or even half of where I was. Now I get it. I feel like I went from being a Lotus to a Ford Fiesta. Or maybe a moped. And that's just the energy aspect. The pain? Forget about it. 

I'm sorry you're having to deal with your issues as well. Health issues are no joke.

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