Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
WARNING: CRAZY LONG POST from PUP
Hey Everybody...
I swear I have not abandoned the group, though I expect to see my photo on milk cartons and billboards MISSING any day. I've missed you gals, when I've been awake and cognizant. I've logged on and read from time to time but did not have the brain cells to offer anything.
As some of you know, I waved the white flag and surrendered to Pain Management in January. My PM doc wanted to put me on the Fentanyl patch due to my gastric pouch/absorption issues. The trouble is that I tried that in 2005 but stopped cold turkey. Yes, the relief is wonderful, but you quickly ramp to a higher dose with more frequent changes. The patches are a hassle to maintain proper adhesion.
My insurance no longer covers Dental, Eye Care, or prescriptions. WOW...what sticker shock for meds vs my previous copay. I'm realizing I took all of that for granted. I'm also blind-sided by the exorbitant costs of stronger pain meds that are only available in name brand. The patches are $400-$500 per month....WHAT??
Next option was Morphine extended release, but doc said it was very expensive also. He recommended Methadone, stating that it provides excellent pain relief, is long acting, and dirt cheap (his words). I was reluctant because it sounded like something on "Breaking Bad". He convinced me to try it, since I will need pain control for the rest of my life (bummer, but not news to me) I've done the martyr route of suffering in silence behind a happy face for half my life. I'm done with that. I am now actively seeking a better quality of life through adequate medication=)
I'm a newbie to this drug world, even though I often joke about Wilfred and his bong. I've never even smoked a cigarette, much less weed. My husband has begged me for years to try medical weed, but I've refused. I'm afraid I'd like it too much AND I already snack too much=)
Back on track...Sorry I can't keep my focus. I did a 3 week trial on Methadone before I had to throw in the towel. I slept more in those 3 weeks than I've slept in 3 years. I could not sit up straight and keep my eyes open. I literally took to my bed and the darkness. I found myself in a place where I was planning my suicide. I had no desire to even try any more...no fight left in me. The kicker is that it offered no pain relief. Granted, surgery could have been performed because I was unconscious 20+ hours a day. But the hours I was awake, I still had the same amount of pain.
Nothing snaps you out of a Methadone induced coma like a phone call that your mom is non-responsive. Yep, on Feb 15 I received that call from her assisted living facility. She was in the ambulance by the time we got there. I banged on the doors screaming for them to let me in there with my mom, which they did. She was lying there basically dead with a faint pulse. I held her head and face screaming for her to come back to me. She would barely open her eyes with no recognition...nothing there but blackness. I will never forget the feeling of looking into eyes of death...my mom's. I rode with her in the ambulance as my husband followed in the Jeep. She remained in a comatose state for over an hour after arriving at the ER. THANK GOD they were able to revive her by restoring her insulin levels and blood sugar. She's back and okay for now. She will be 88 in May. She suffered congestive heart failure twice in 2013. So, it's no mystery that she can die at any time. That makes it NO easier to face the reality of it all. It shook me up pretty bad. The irony is that I went from planning my suicide to pre-planning her funeral arrangements. I have 5 siblings who are never present, period...in her life...and certainly won't be in her death. I know that the responsibility, as always, will be mine.
I tapered down off the Methadone as best I could, regaining 75% of brain function, and got busy making the arrangements. It is done. I am now trying Morphine ER. I've been taking it for about a week. I'm not experiencing the FUNKY side effects that I did with Methadone. I had unbearable itching to the point of hives that I scratched through the night until I drew blood. I had horrid sweats and a hovering darkness that I cannot describe. So far the Morphine has brought little relief, but the side effects are less...mostly sleepiness. I'm going to stay with it for the full 30 day trial if at all possible. I think that possibly the residual Methadone is "blocking" the properties of the Morphine, so it will take a little more time for it to work. My PM doc assures me that if this doesn't work...we'll keep trying until we find something that does work. He has been so kind. His first question was "How are you still standing WITHOUT narcotics?". I told him that I've tried so many things over the years with no success that I no longer had HOPE.
He replied "Oh, no...You are wrong...As long as we have God, we have hope". Wow, IME, a doctor who doesn't think HE is God is a rarity. It's taken a LONG TIME to get here, and I have a LONG way to go. But yes, I have HOPE.
I'm concerned, though, that my personality has changed. I don't have any "fight" left in me. I have no drive or determination that sustained me through years of suffering and perseverance. My get up and go got up and went. I NEED that motivation to exist. It seems that these pain meds are depressants, which are a BAD thing for me, with my history of severe depression. I just wish there was a medication for pain that lifted my spirits, too. Any suggestions are appreciated=)
Once again I apologize for the BOOK I've just posted. I just wanted to touch base with the forum and explain my absence. I see that there have been reasons for CELEBRATION for some and SADNESS and GRIEF for others. I send HUGS OF SUPPORT, Kudos to the good news and my deepest sympathy for the losses. My heart aches for the newbies and the veterans who continue to FIGHT this battle every day of their lives.
Thank y'all for reading this. KNOW that I truly care for each of you...when I'm not in a freaking coma=)
~~Pup
Hey Everybody...
I swear I have not abandoned the group, though I expect to see my photo on milk cartons and billboards MISSING any day. I've missed you gals, when I've been awake and cognizant. I've logged on and read from time to time but did not have the brain cells to offer anything.
As some of you know, I waved the white flag and surrendered to Pain Management in January. My PM doc wanted to put me on the Fentanyl patch due to my gastric pouch/absorption issues. The trouble is that I tried that in 2005 but stopped cold turkey. Yes, the relief is wonderful, but you quickly ramp to a higher dose with more frequent changes. The patches are a hassle to maintain proper adhesion.
My insurance no longer covers Dental, Eye Care, or prescriptions. WOW...what sticker shock for meds vs my previous copay. I'm realizing I took all of that for granted. I'm also blind-sided by the exorbitant costs of stronger pain meds that are only available in name brand. The patches are $400-$500 per month....WHAT??
Next option was Morphine extended release, but doc said it was very expensive also. He recommended Methadone, stating that it provides excellent pain relief, is long acting, and dirt cheap (his words). I was reluctant because it sounded like something on "Breaking Bad". He convinced me to try it, since I will need pain control for the rest of my life (bummer, but not news to me) I've done the martyr route of suffering in silence behind a happy face for half my life. I'm done with that. I am now actively seeking a better quality of life through adequate medication=)
I'm a newbie to this drug world, even though I often joke about Wilfred and his bong. I've never even smoked a cigarette, much less weed. My husband has begged me for years to try medical weed, but I've refused. I'm afraid I'd like it too much AND I already snack too much=)
Back on track...Sorry I can't keep my focus. I did a 3 week trial on Methadone before I had to throw in the towel. I slept more in those 3 weeks than I've slept in 3 years. I could not sit up straight and keep my eyes open. I literally took to my bed and the darkness. I found myself in a place where I was planning my suicide. I had no desire to even try any more...no fight left in me. The kicker is that it offered no pain relief. Granted, surgery could have been performed because I was unconscious 20+ hours a day. But the hours I was awake, I still had the same amount of pain.
Nothing snaps you out of a Methadone induced coma like a phone call that your mom is non-responsive. Yep, on Feb 15 I received that call from her assisted living facility. She was in the ambulance by the time we got there. I banged on the doors screaming for them to let me in there with my mom, which they did. She was lying there basically dead with a faint pulse. I held her head and face screaming for her to come back to me. She would barely open her eyes with no recognition...nothing there but blackness. I will never forget the feeling of looking into eyes of death...my mom's. I rode with her in the ambulance as my husband followed in the Jeep. She remained in a comatose state for over an hour after arriving at the ER. THANK GOD they were able to revive her by restoring her insulin levels and blood sugar. She's back and okay for now. She will be 88 in May. She suffered congestive heart failure twice in 2013. So, it's no mystery that she can die at any time. That makes it NO easier to face the reality of it all. It shook me up pretty bad. The irony is that I went from planning my suicide to pre-planning her funeral arrangements. I have 5 siblings who are never present, period...in her life...and certainly won't be in her death. I know that the responsibility, as always, will be mine.
I tapered down off the Methadone as best I could, regaining 75% of brain function, and got busy making the arrangements. It is done. I am now trying Morphine ER. I've been taking it for about a week. I'm not experiencing the FUNKY side effects that I did with Methadone. I had unbearable itching to the point of hives that I scratched through the night until I drew blood. I had horrid sweats and a hovering darkness that I cannot describe. So far the Morphine has brought little relief, but the side effects are less...mostly sleepiness. I'm going to stay with it for the full 30 day trial if at all possible. I think that possibly the residual Methadone is "blocking" the properties of the Morphine, so it will take a little more time for it to work. My PM doc assures me that if this doesn't work...we'll keep trying until we find something that does work. He has been so kind. His first question was "How are you still standing WITHOUT narcotics?". I told him that I've tried so many things over the years with no success that I no longer had HOPE.
He replied "Oh, no...You are wrong...As long as we have God, we have hope". Wow, IME, a doctor who doesn't think HE is God is a rarity. It's taken a LONG TIME to get here, and I have a LONG way to go. But yes, I have HOPE.
I'm concerned, though, that my personality has changed. I don't have any "fight" left in me. I have no drive or determination that sustained me through years of suffering and perseverance. My get up and go got up and went. I NEED that motivation to exist. It seems that these pain meds are depressants, which are a BAD thing for me, with my history of severe depression. I just wish there was a medication for pain that lifted my spirits, too. Any suggestions are appreciated=)
Once again I apologize for the BOOK I've just posted. I just wanted to touch base with the forum and explain my absence. I see that there have been reasons for CELEBRATION for some and SADNESS and GRIEF for others. I send HUGS OF SUPPORT, Kudos to the good news and my deepest sympathy for the losses. My heart aches for the newbies and the veterans who continue to FIGHT this battle every day of their lives.
Thank y'all for reading this. KNOW that I truly care for each of you...when I'm not in a freaking coma=)
~~Pup
My mom has been on extended release morphine for several years now due to a back injury. It certainly doesn't take away all her pain, but it is the best she has found so far (she also works with a pain clinic). I believe she supplements it with something else for breakthrough pain but I am not sure what that other med is. Hopefully the morphine is a step in the right direction for you!
Christine...I have suffered for so long, trying to avoid pain meds because if they are strong enough to relieve any pain, they knock me out. I'm an "all or nothing" person, so I cannot survive in a comatose state. I can see from the past weeks that Pain Management is a process. It's not "one size fits all". I still don't think this dosage of Morphine is the answer, but it will be part of the equation.
As for doctors who are "hesitant about pain meds"...Yes, my PCP does not even acknowledge my pain because it's not a flashing neon sign. He could have helped me a long time ago if he weren't such an arrogant asshole. I had to fight like a wildcat to finally get to this pain specialist. It's not the preferred route, but 8+ specialists since September 2013 have told me there's nothing more they can do...I've gotta live with it. I won't get on my soap box, as my history is pretty much documented through posts. I know damn well that if they would listen to me, and go in for a look see with the camera, they would confirm what I KNOW TO BE TRUE. My gut is either once again consumed by endometriosis OR consumed by scar tissue that is choking my colon and bladder. They won't do it. I hurt so badly most days that I fantasize about cutting it out with a butcher knife. No, I'm not insane. I'm infuriated by doctors who dismiss the obvious, tell us we're crazy and send us home.
My PM doctor told me that although he doesn't treat pelvic pain, he can treat my bone/joint pain. The implication being that pain is pain. The average doctor won't touch a person with my history. I'm just grateful he's willing.
kD...I'm still in HELL, but closer to the exit, I hope. I blame myself for my mom's digression, as I've abandoned her, my husband, and our business in this pursuit for relief.
Megan...Thank you sweetie...Yes, we all go through so many twists and turns with this disease.
Felana...Does your mom take what they call an adjunct med for her breakthrough pain? That's his ultimate plan, but we've agreed to try ONE MED at a time, so we KNOW what does/doesn't work. He's explained that often it takes a combination or cocktail of meds to get the best result with low doses. I cannot tolerate large doses of even Advil=(
Whyme...I read about your health scare. I know how frightening that can be when the "cure" almost kills you. My husband is deadly allergic to Penicillin, which his lifetime doc knows. However in 2006 while hospitalized with severe ethnoyd sinus infection, the nurse attempted to start an IV of Levoquin. Had I not been there to stop it, he would have DIED. Oops doesn't count when you're dead. Thank God, you are feeling somewhat better.
I remain hopeful for you ladies who are TTC, elated for those of you who have done so, saddened for your losses...I should be back around to offer support for all of you who are just fighting the good fight in hopes of getting your lives back. Believe me, I know.
Thank y'all again=)
~~Pup
Hugs to you Miss Pup! And dont go being a stranger!
I cannot believe that happened to you with the methadone, I am so sorry you had to go through that! :-/ I'm glad you and your doctor are trying different medications, hopefully the morphine will help. As vans mentioned antidepressants are commonly used to help manage chronic pain as are some antiepileptic medications (like Neurontin).
I hope you are able to find something that helps.
I am so easily sedated, which is prohibitive in my day to day life. I have to be alert and aware, "ON" for both our current and our perspective Arch/Eng/Design clients. There is no room for "oops" in our line of work if we wish to keep our business on top.
I am continuing with the Morphine trial with minimal pain relief so far. The side effects are bothersome with the itching (Zyrtec helps) and soggy night sweats (nothing helps). I just need a med that will take away the edge of daily pain, so that I can cope with what remains.
There's another issue that I could use opinions/advice from y'all. I've been battling a UTI (cultured as e-coli) yea, I know it's common with women, but I still need to throw up a little in my mouth...It makes me feel SO FILTHY. I've taken Macrobid, Bactrim, Septra and Doxicycline, but it keeps raging back. My urine is dark yellow and WREAKS of putrid sulfur. (Gross, but my pee smells like a toot)
I am so afraid with the severe pain in my flanks, kidneys and bladder, that this infection may have already entered my blood stream and become septic. WHAT SHOULD I DO?
Thanks~~Pup