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.

---

So sorry to hear. Someday we will have a cure for everything, sadly we aren't there yet.

Not sure if you've seen these, but here are some online support forums. I hope they can help. http://endometriosis.org/support/online-support/

I've heard the a hysterectomy can "cure" it. Kind of an extreme measure, but if you're a candidate, it may be an option.

It's hard for me to relate to how this affects your daily life, but I do hope you're able to find a treatment which, at the very least, can help you get back to feeling mostly normal.

---

IT WAS ALWAYS THE JAGS

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 oddly have 2 ex girlfriends that have endometriosis. One I dated almost ten years ago and she had surgery for it after they put her through tests for a couple years and she has been doing significantly better since.

The other one was more recent but they actually prescribed her with thc/cbd treatments for the pain and she's seemingly 100%.

Hopefully you can get the treatment you need to feel better sooner than later!

---

Coughlin when asked if winning will be a focus: "What the hell else is there? This is nice and dandy, but winning is what all this is about."

Wishing you better luck in finding relief and treatment, americus.
Here's hoping there's something out there you haven't tried or thought of that will help!

---

So sorry to hear. Someday we will have a cure for everything, sadly we aren't there yet.

Not sure if you've seen these, but here are some online support forums. I hope they can help. http://endometriosis.org/support/online-support/

I've heard the a hysterectomy can "cure" it. Kind of an extreme measure, but if you're a candidate,  it may be an option.

It's hard for me to relate to how this affects your daily life, but I do hope you're able to find a treatment which, at the very least, can help you get back to feeling mostly normal.

I actually had a hysterectomy three years ago for unrelated issues and they didn't see anything during surgery or they would have caught it then. It's possible a piece was left in there and that led to this current issue. Thank you for the link, I'll definitely check it out.

---

While I don't pretend to know more about endometriosis than you, there does seem to be a glimmer of hope your discomfort can be eased. I hope it can, and soon.

---

If something can corrupt you, you're corrupted already.
- Bob Marley


 

While I don't pretend to know more about endometriosis than you, there does seem to be a glimmer of hope your discomfort can be eased. I hope it can, and soon.

Thank you. I watched the NFL's football life story about Steve Gleason of the New Orleans Saints the other day and I can't imagine being an NFL player and someone who was as adventurous as he was being confined to his ALS riddled body. It put things in perspective a little. I'm still pretty low about my situation but things can always be worse.

---

((((HUGS))))

---

What in the Wide Wide World of Sports is agoin' on here???

Holy crap -- that sounds terrible. Nobody should have to experience that during their middle age stage of life.

Prayers for ya

---

Hang in there and keep your head up.  Things will get better.

---

There are 10 kinds of people in this world.  Those who understand binary and those who don't.

Holy crap -- that sounds terrible.  Nobody should have to experience that during their middle age stage of life.

Prayers for ya

Middle age....there is not an appropriate emoji for that! Lol. 

Thank you though. 

It's tough. The crapfest gets even more depressing when doctors don't have the slightest idea how to treat your illness/disease so they try to blow you off or act like you're an idiot. There are no specialists for this in my state and most GYN's just don't want to have anything to do with it because they just don't know anything about it.

---

Holy crap -- that sounds terrible.  Nobody should have to experience that during their middle age stage of life.

Prayers for ya

Middle age....there is not an appropriate emoji for that! Lol. 

Thank you though. 

It's tough. The crapfest gets even more depressing when doctors don't have the slightest idea how to treat your illness/disease so they try to blow you off or act like you're an idiot. There are no specialists for this in my state and most GYN's just don't want to have anything to do with it because they just don't know anything about it.

Really? OBGYNs won't treat it? Maybe you should come to the US.

On the more supportive side tho, my mother had endometriosis for years before she finally figured out her 'bad periods' weren't normal. She had a total hysterectomy and this resolved it for her. If they know where the tissue is, I think surgery can be a good option. I am sorry this happened to you. As bunny says *hugs*

---

Yes, it's improvement, but it's Blaine Gabbert 2012 level improvement. - Pirkster

http://youtu.be/ouGM3NWpjxk The Home Hypnotist!

http://youtu.be/XQRFkn0Ly3A Media on the Brain Link!
 

Peyton must store oxygen in that forehead of his. No way I'd still be alive after all that choking.

 

Middle age....there is not an appropriate emoji for that! Lol. 

Thank you though. 

It's tough. The crapfest gets even more depressing when doctors don't have the slightest idea how to treat your illness/disease so they try to blow you off or act like you're an idiot. There are no specialists for this in my state and most GYN's just don't want to have anything to do with it because they just don't know anything about it.

Really? OBGYNs won't treat it? Maybe you should come to the US.

On the more supportive side tho, my mother had endometriosis for years before she finally figured out her 'bad periods' weren't normal. She had a total hysterectomy and this resolved it for her. If they know where the tissue is, I think surgery can be a good option. I am sorry this happened to you. As bunny says *hugs*

GYN's treat symptoms, specialists actually do the heavy lifting. I'm an unusual case because I never had it until AFTER my hysterectomy, which I had due to fibroids, and I believe it's possible some tissue was left in there and started this whole thing. There was no indication of any endo at all during that surgery and nothing in the pathology report afterwards. I've never had any doctor tell me I had this and I never had any signs or symptoms. 

My current doctor finds this extremely hard to believe and these folks make you feel like you're not being completely truthful because it doesn't make sense. It's frustrating. I've known myself for 46 years and I know all there is to know about my history- I was there!! These doctors have known me since December. 

I have found an online resoource that I believe is going to be helpful with information on how to navigate all of this with finding a specialist (closest one to me is in TN), how to deal with my insurance company and their coverage and so on. Now I just have to try to learn as much as I can and try to stay sane when the hormone fluctuations send my mental state into a nosedive. Not fun when you already live with depression.

---

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.

---

 

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.

---

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.

Ha, yeah it definitely stinks when people don't understand.  I think my wife finally gets it and when I want a day to just kind of lay around and relax she doesn't push very hard.  I make it through the week with work and sometimes I just want to sit on the couch and stare at the tv.

I feel bad for my son because I know he wants to play so usually I push myself until he goes to bed.  Health issues suck....In the older movies 2018 had so many advances.  I'm waiting for those.

---

 

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.

Ha, yeah it definitely stinks when people don't understand.  I think my wife finally gets it and when I want a day to just kind of lay around and relax she doesn't push very hard.  I make it through the week with work and sometimes I just want to sit on the couch and stare at the tv.

I feel bad for my son because I know he wants to play so usually I push myself until he goes to bed.  Health issues suck....In the older movies 2018 had so many advances.  I'm waiting for those.

No kidding! And I'm glad your wife has come around. Your kid though.... I know he's glad you make the effort. He won't appreciate the sacrifice until he's older and has his own kids to make the same effort for. You are setting a good example for him!

---

My SIL has endometriosis and my Wife had a hysterectomy due to fibroids about 2 years ago. This stuff is horrible. I'm sorry you are having to continue to deal with it. I hope nothing else pops up for my Wife or anyone. Female parts need better warranties.

---