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.
SpeckledPup
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
I've tried to post several times in the last couple of days, but deleted because my words were so negative. You ladies don't need to hear my RANTS...nobody does.
I just read a post of a sister who's considering a career in medicine to help women with endometriosis. KUDOS! My poor husband dreamed vividly last weekend that I had received my M.D. with plans to specialize in treatment of endometriosis=) Bless his heart...wishful thinking, I suppose.
I read of the challenges, the pain and the losses on this discussion forum and I weep for each of you. I can recall with heartache, being in that "hopeful" space of wanting children that I couldn't have. By the time I was actually diagnosed, I went into a "death spiral" of organ failure with multiple surgeries and treatments. The loss of so many things that "healthy" women take for granted does not lessen with age. I STILL KNOW that I could have been a GREAT mom. I read kDeezy's words that she and DH can make great embryos...IF only...I feel your pain. I felt it 30 years ago when we could not conceive...then 20 years ago when I lost hope and I lost ME. I wish I could make it better for all of us. The happiest dreams I've ever had were the ones where I was a mom (always with twins) There are no words to explain the elation...or the breath-taking grief of loss when I awake. I still have those same dreams @ 52, though thankfully not nearly as often.
YES, I've absolutely cried out to God "This isn't fair!" But most of my life hasn't been fair. My mom had 6 children, with me being the youngest. She should NEVER have been allowed to have babies. Both she and my dad were verbally and physically abusive. We were raised in a house filled with FEAR. I've often heard the expression "FAIR is where you take your pig to win a blue ribbon. LIFE isn't fair!" No, life is where you can't take your pig to the fair to win a blue ribbon. Why, you ask? Because your mother made your brother shoot him, then she slashed his throat and made all of us kids participate in preparing the meat for winter storage. Then she beat the hell out of us (me, especially because I couldn't eat my "pet") if we cried. That's some deep psychotic shit, isn't it?
Just one of the MANY issues I have to make peace with in order to care for my "aging" mother. She is as mean and awful today @ 87 as she was my whole life. I left the family "situation" for over 5 years for my own sanity in the 90's. During that time my dad grew ill and she wouldn't let me see him. She would take his food away as he begged for her to let him eat. She would beat him with her shoe, or the remote control...or whatever was "handy". The last phone conversation we had, he was BEGGING me to rescue him and get him out of her control. I told him I couldn't without killing or being killed by her. I told him we would meet again in Heaven. We will, but that brings me little comfort now.
I'm sorry. I should delete this emotional vomit. I'm dealing with SO MUCH...as are all of you=(
You pup, are amazing! Hugs.
Believe it or not, I kept all of this (and so much more) inside for most of my life. Truth be told...I still would be "shut-mouthed" outside of the safety of anonymity. This forum has been a blessing to me, though I often fear that I am a "curse" or a "blight" upon it.
I am so sorry that I have been "off the grid". I've simply hit the wall with EVERYTHING. I fear that if I don't get some kind of help with the physical pain, I cannot continue with the emotional pain...for which there is NO PILL. Unfortunately, the PM experience is much like my 2005 (quit) attempt in that pain is so severe, it requires meds that anesthetize me. Then there's no relief...just comatose sleep. I'm continuing the Morphine for the full 30 day trial. It's funny, though not "ha-ha" that folks worry about the damage to liver, etc. My response is simply "Why will I need my liver in the cemetery?"
~~Pup
I for one appreciate you posts and I know there is a dark road we travel from chronic daily pain that nobody understands, or maybe worse, that nobody tries to help us with.
You be sure to pop in from time to time. You are always welcome in my book. My word of advice to you, stop trying to take care of or please anybody else right now. Good luck with the rest of the methadone trial. When will you revisit your doc about it?
My PM doctor kept me at the 15 mg Morphine ER, but changed dosing to more frequent @ 8 hour intervals. He's told me to say ahead of the constipation, but all of my bag of tricks over 20+ years are failing to produce a BM. I'm getting so bloated and backed up, I can't keep down fluids. I resorted (once again) earlier tonight, to lie in my bathroom floor to administer a hospital-issue "mega-bag" enema. THIS CAN'T BECOME MY FOREVER ANSWER.
I cry out to God...Lord, EVERYTHING about me is either hurt or doesn't work like it should. I hurt every waking moment. Do YOU really have to make POOPING so outrageously painful and nearly impossible? TMI
In closing, I want to ask...Has anyone ever had surgery to remove abdominal adhesions? Did it relieve the binding and the pain? How long, if any, did your relief last?
HUGS of SUPPORT and HOPE for HEALING=)
~~Pup
Actually, I'm not doing any better...wondering if this is the right med for me. I think that my abdomen is a massive web of adhesions that cold be strangling my intestines, eventually leading to obstruction. I worry, but no surgeon will touch me=)
I'm ok. Really tired as I'm house/pet sitting for one of my bosses...and they are really birds so their dogs are waking me up to eat at like 5:30am!!