Is a hysterectomy not an option? I think I would be yanking the lady parts out by hand if I were suffering as much as you. Jingles you get some relief somehow.
Have you tried Oxycontin? Its time released and you take one pill every 12 hours. It is difficult to get it prescribed but its one of the few pain drugs that will allow you to live a relatively normal life
Oh, they give me a hard time about the Percocet. They give me 20 at a time which I can usually make last 30+ days (some addict I am, huh?)
I can’t imagine what they’d say about Oxy.
And, I explain to them, I DON’T WANT THE PERC! I WANT YOU TO GET RID OF THE ENDO!!
I am just so frustrated. :no:
[QUOTE=Laurierace;5513517]
Is a hysterectomy not an option? I think I would be yanking the lady parts out by hand if I were suffering as much as you. Jingles you get some relief somehow.[/QUOTE]
I can’t get anyone to call me back. I say, “This obviously isn’t working. I need to come in so we can try something else.”
They schedule me for 2 weeks… OMG 2 weeks!
2 weeks is like forever when I’m like this.
I send another message begging for Lupron. Granted this was just yesterday morning, but still… I think I should have heard back by now. I’m getting really irritated. It doesn’t take that long to give a shot.
Not sure about your insurance, but can you see someone else who might meet your needs. The doc’s you have certainly don’t seem to be.
If worse case, I’d go the emergency room.
Pain can drive you nuts.
I also agree, perkoset/dan, etc are not appropriate. Great for pain and to sleep it off, but you need something that will cure this.
I had grade 5 endo, and they put me on bc,and that helped me tremendously…good luck
[QUOTE=fivehorses;5513578]
Not sure about your insurance, but can you see someone else who might meet your needs. The doc’s you have certainly don’t seem to be.
If worse case, I’d go the emergency room.
Pain can drive you nuts.
I also agree, perkoset/dan, etc are not appropriate. Great for pain and to sleep it off, but you need something that will cure this.
I had grade 5 endo, and they put me on bc,and that helped me tremendously…good luck[/QUOTE]
I’ve been on BC for a year - different kinds - none of them can destroy super endo, crusher of obturator nerves. 
[QUOTE=fivehorses;5513578]
I had grade 5 endo, and they put me on bc,and that helped me tremendously…good luck[/QUOTE]
How do they grade it? They’ve never been able to see mine, so I’ve never been given a grade. I guess I’ll call it grade hurts-like-sh*t
I had an oophrarectomy, so the doc was in there, and after he called it a grade 5, due to the adhesions throughout my abdominal cavity.
Thankfully, bc worked for me, because he refused to do a hysterectomy since he said the adhesions were attached to organs, etc and he was concerned he would do damage.
I hope you find relief. I would be looking into other docs. If this one isn’t helping you, find someone else.
I am sorry for you, the pain is excruciating.
I never have been happier to say I am now post menopausal…I loved menopause!
I’m finally getting my Lupron - in a week. Ugh. It can take that long to get it in. At least the process is moving along.
I’m such a pushy patient, I stopped at the doctor’s office on the way home (looking like complete garbage by that point) and I guess they took pity on me because they took me right back. Maybe they didn’t want to leave me out in the waiting room scaring the rest of the patients. :eek:
I hope this stuff works.
[QUOTE=GotGait;5456662]
I’ve begged to have everything ripped out, but no doctor wants to do it.[/QUOTE]
Why don’t they want to do it? Medical reason or "You’re still of childbearing age? If the latter, I’d find another doctor who trusts me to have control over my body and reproduction. They are out there.
[QUOTE=GotGait;5514945]
I’m such a pushy patient, [/QUOTE]
Pushy? No. You’re a good patient who advocates for herself. :yes:
Good luck to you. I had ovarian cysts and had an ovary out 20 or so years ago. While they were in there they scraped out a lot of endo and then I went on BC (LoEstrin) for 15 years or so until I developed fibroids and had to go off it. People who’ve never had the pain just. don’t. get. it.
Well… I went ahead and had ablation surgery, just another option for pain relief rather than a hysterectomy. No real pain though after the procedure, just crampy for a few days. Lets see what happens next, periods are suppose to be lighter, if at all.
I think in my case, the stuff we know exists isn’t actually on any of the organs that they’d rip out. They seem to be extremely reluctant to mess with healthy organs if there are alternatives. I don’t know if it’s the insurance companies being a pita, or the doctors being wary of being sued - a bit of both maybe?
One doc absolutely refused to even consider it, and he’s gone. The one I have now wants to try the shot first since it will conclusively prove it is Endo. I don’t think there is any doubt at this point, but I’m not a doctor. /shrug
If it comes back after the shot, he’s already said he’ll remove everything.
Insurance companies can be a bitch…I won’t go into all the boring details. They too, had me on painkillers etc. I just kept persuing it until I found a doctor who realized I was going to blow my brains out if I did not get true relief after 10 years of horrible suffering and 15 years of moderate suffering. It was all in my abdominal cavity and on several organs as well. I had to sign a bunch of extra stuff, and it took them over 4 hours to peel it off all the areas it had attached to. As miserable as I was, I figured I would rather be dead than completely non functional and in pain until memopause. My mother had her period until she was 53 and I was 40 at the time. It had actually moved my intestines onto the top of my uterus. It had twisted my bladder all around and more.It was a giagantic mess. I would not trade my hysterectomy for the world. I hope you find the relief you need. I really do know exactly how you feel.
[QUOTE=tradewind;5515725]
Insurance companies can be a bitch…I won’t go into all the boring details. They too, had me on painkillers etc. I just kept persuing it until I found a doctor who realized I was going to blow my brains out if I did not get true relief after 10 years of horrible suffering and 15 years of moderate suffering. [/QUOTE]
I’m always very careful about telling doctors how I really feel now. I had one want to lock me in the psych ward when I made the mistake of saying the pain made me want to die. Unbelievable. :mad:
Hey jerkface, if you fix me, I won’t wish I was dead.
[QUOTE=GotGait;5515776]
I’m always very careful about telling doctors how I really feel now. I had one want to lock me in the psych ward when I made the mistake of saying the pain made me want to die. Unbelievable. :mad:
Hey jerkface, if you fix me, I won’t wish I was dead.[/QUOTE]
That’s basically true of any illness, including depression.
Pain management still sucks, big time ~ the options for the patient aren’t that good.
[QUOTE=grayarabpony;5515824]
That’s basically true of any illness, including depression.
Pain management still sucks, big time ~ the options for the patient aren’t that good.[/QUOTE]
(Going to remove my post because I realized it sounded like I was coming down hard on psychiatric facilities, and I didn’t mean it that way.)
I didn’t see your post and I haven’t been in a psychiatric facility, but I agree, being admitted in a psychiatric hospital is not going to help nerve pain. 
Has your doctor said anything about progesterone treatments? I don’t know how effective they are overall but I know a couple of women who had good results ~ one for pain and one for infertility.
I got my Lupron shot today. I don’t know how they got it so fast, but they did. I hope it works!
Well, here’s an update. I got the shot Wednesday when I could barely function. I was about to quit my job because I could not drive or do anything.
I took the next two days off because Lupron initially causes an estrogen spike before it shuts everything down. The Endo declared nuclear war at first, but it seems to have turned the corner now. It actually appears to be working and shrinking it away from the nerve. I’m tentatively optimistic. I almost feel like a real person again.
Fingers crossed that this is the answer you were looking for.
