CherryQueen
07-26-2006, 02:56 PM
Hi everyone! I've been lurking here for a long time, and I finally decided to register, so I just wanted to take the time to introduce myself and tell you my long and probably boring story.
I've had chronic kidney stones (14 so far) and UTI's since I was 15 years old. When I was 21, I had ovarian cysts and have had excruciating chronic pelvic pain ever since. I've moved around a lot and had a lot of different docs, all of whom-- urologists and gyn's both-- would put me on pain medicine for a little while then snatch it away because I was "getting addicted"-- in reality I was just constantly in pain without it. The one GOOD urologist I had who listened to me and allowed me to have the medications that would help retired shortly after he started seeing me. No one would take the time to continue to do tests to get to the bottom of what was going on. In April of last year, I had to quit my job because the pain was so bad. We then moved to Aheville, NC. This past January, I had a staph infection in my urinary tract, for which I was put in the hospital for 7 days, during which time I couldn't eat at all. Even after I left the hospital, I was constantly nauseous. I was still in pain and my doctor would give me 30 Percocet 7.5's every 2 weeks. Then, yet again, he snatched them away suddenly after over 2 months of taking them because I was "addicted" without doing a taper at all. No matter who I told, no one would listen to me when I said how much pain I was in because they couldn't find a cause. Even my husband and my mother stopped listening to me and believeing me. I was horribly depressed, going through monster withdrawals, and in terrible pain. My husband and I nearly seperated. Then we made a return move to Northern Virginia from Asheville because my husband got a new job. I started seeing a new gyn who started me on Toradol, then added Vicodin ES, then bumped me up to Percocet. The Percocet worked beautifully, except that I couldn't sleep through the night: when the meds wore off, the pain woke me. Finally, he did a laparoscopy and found that my uterus was tipped and I had pelvic congestion syndrome-- basically varicose veins in my uterus. Since there are no support hose for your girly parts (lol), the only option for a complete cure is a total hysterectomy, and that's not a sure cure. So he sent me to pain management. My life has started to improve from my first visit with Dr. G, my pain doc. He started me on Oxycontin 20 mgs 2x a day, then bumped me up to 40 mgs 2x a day. We're currently at 40 mgs twice a day and 2 Oxy IR 5mgs every 4 hours as needed for breakthrough pain. FINALLY someone listened, and I'm pain free for the first time in over 5 years. My husband is very remorseful that he didn't believe me (and tried to put me in drug treatement... I tried it for his sake, and it didn't work, because I wasn't addicted, just in pain), and our marriage is stronger and better than ever. Some of my family isn't on board with the treatment because all they hear is "narcotics", not the part where the narcotics don't make loopy or sleepy or "high".... they just make me, ME again for the first time in years. I went to a job interview the other day, and the lady interviewing me said, "Are you always this happy?". UP until recently, I haven't been. I felt like I was standing in the middle of a room full of people, screaming at the top of my lungs, and no one could hear me or wanted to listen. Now, I know I'm not crazy or a junkie, and I'm so happy. I'm working on getting a new job, and I'm finally myself again.
This seems like a really good group and I'm glad to be a part of a group of people who know what I'm going through. Sorry about the novel up there!
I've had chronic kidney stones (14 so far) and UTI's since I was 15 years old. When I was 21, I had ovarian cysts and have had excruciating chronic pelvic pain ever since. I've moved around a lot and had a lot of different docs, all of whom-- urologists and gyn's both-- would put me on pain medicine for a little while then snatch it away because I was "getting addicted"-- in reality I was just constantly in pain without it. The one GOOD urologist I had who listened to me and allowed me to have the medications that would help retired shortly after he started seeing me. No one would take the time to continue to do tests to get to the bottom of what was going on. In April of last year, I had to quit my job because the pain was so bad. We then moved to Aheville, NC. This past January, I had a staph infection in my urinary tract, for which I was put in the hospital for 7 days, during which time I couldn't eat at all. Even after I left the hospital, I was constantly nauseous. I was still in pain and my doctor would give me 30 Percocet 7.5's every 2 weeks. Then, yet again, he snatched them away suddenly after over 2 months of taking them because I was "addicted" without doing a taper at all. No matter who I told, no one would listen to me when I said how much pain I was in because they couldn't find a cause. Even my husband and my mother stopped listening to me and believeing me. I was horribly depressed, going through monster withdrawals, and in terrible pain. My husband and I nearly seperated. Then we made a return move to Northern Virginia from Asheville because my husband got a new job. I started seeing a new gyn who started me on Toradol, then added Vicodin ES, then bumped me up to Percocet. The Percocet worked beautifully, except that I couldn't sleep through the night: when the meds wore off, the pain woke me. Finally, he did a laparoscopy and found that my uterus was tipped and I had pelvic congestion syndrome-- basically varicose veins in my uterus. Since there are no support hose for your girly parts (lol), the only option for a complete cure is a total hysterectomy, and that's not a sure cure. So he sent me to pain management. My life has started to improve from my first visit with Dr. G, my pain doc. He started me on Oxycontin 20 mgs 2x a day, then bumped me up to 40 mgs 2x a day. We're currently at 40 mgs twice a day and 2 Oxy IR 5mgs every 4 hours as needed for breakthrough pain. FINALLY someone listened, and I'm pain free for the first time in over 5 years. My husband is very remorseful that he didn't believe me (and tried to put me in drug treatement... I tried it for his sake, and it didn't work, because I wasn't addicted, just in pain), and our marriage is stronger and better than ever. Some of my family isn't on board with the treatment because all they hear is "narcotics", not the part where the narcotics don't make loopy or sleepy or "high".... they just make me, ME again for the first time in years. I went to a job interview the other day, and the lady interviewing me said, "Are you always this happy?". UP until recently, I haven't been. I felt like I was standing in the middle of a room full of people, screaming at the top of my lungs, and no one could hear me or wanted to listen. Now, I know I'm not crazy or a junkie, and I'm so happy. I'm working on getting a new job, and I'm finally myself again.
This seems like a really good group and I'm glad to be a part of a group of people who know what I'm going through. Sorry about the novel up there!
Sponsor
bjeanne
07-26-2006, 11:19 PM
Hi, I'm rather new as well. Sorry, I'm not feeling well and didn't read your post yet. . just hate it for the person when there is no reply yet. I know how that feels . . . just hang in there. . .they seem to be really great on here once they see your post. If someone can help, I'm sure they will.
best of luck,
barb
best of luck,
barb
BrittleBones
07-26-2006, 11:36 PM
Hi and Welcome CherryQueen - I can really hear the frustration and anger in your post when you describe your life BEFORE you found someone who would listen to your complaints and take you seriously! It's especially hurtful when your own family starts doubting your claims of pain and begins to see you as a person who is just seeking drugs for the "hell of it". Screaming at the top of your lungs while all those around you seem to be deaf is, unfortnately, a common scenario for so many people who live with chronic pain. The most important thing is that now you've found a doctor who is willing to aggresively treat your pain and your husband is being supportive. I have found so much help by reading the posts on this website and by asking questions. No question is too simplistic - so just keep asking. There is always someone who has shared your problem or situation who will stop by and answer your question or post about their own experiences. I finally found good pain relief in Methadone as my long acting medication and oxycodone for breakthrough pain. I had tried many, many other narcotic and non-narcotic drugs before that combination. My problem is severe osteoporosis which has led to many spinal and hip fractures and surgeries to fuse my vertabrae. Keep checking in - hope to hear about your progress. KathyMac:wave:
milimoki
07-27-2006, 03:27 AM
Welcome to the boards. I know how you feel, I have chronic stones as well. I had 10 last month, and anywhere from 5-10 a month. I also have other chronic pain conditions. The stones are by far the worst. But at least the stones come and go. I would die if I had that pain 24/7. I know how you feel when people doubt you, its very frustrating. Dr.'s need more pm studies. I recently just started with a pm Dr. and I am much better than I ever have been. I am very lucky in the fact that I dont think I will be on these med's for my whole life, like some of the people on here. Do you plan on getting a hysterectomy?
bjeanne
07-27-2006, 07:09 AM
Hi again, I've just read your post and I'm so sorry for all of the years of pain and of no one getting it or believing you. . I'm in the same situation. Unfortunately, I havent found answers or good help. But I know my family doesn't believe me. . like I wanted to go from running 6 miles a day/6 days a week, to completely bedridden, unable to work or enjoy my friends, my life, etc at 42 years old (that's when this started), I'm 43 soon to be 44.
It is a disgrace. I sometimes wish I (GOD FORBID, I know and NO disrespect to those that do have it) wish I had Cancer or some other terminal disease that had another "label" other than chronic pain. . .maybe then someone would get it. You know?
I'm so glad your husband is on board with you and that you have found a good doc. . good luck finding a new job.
Best of luck to you.
Barb
It is a disgrace. I sometimes wish I (GOD FORBID, I know and NO disrespect to those that do have it) wish I had Cancer or some other terminal disease that had another "label" other than chronic pain. . .maybe then someone would get it. You know?
I'm so glad your husband is on board with you and that you have found a good doc. . good luck finding a new job.
Best of luck to you.
Barb
CherryQueen
07-27-2006, 09:52 PM
Right now, a hysterectomy is not something my GYN is even willing to consider, as I'm only 25. And, the jury is still out on whether or not I want to have kids, so I want to at least have the OPTION for now. The really GOOD part about the pelvic congestion syndrome is that it explains almost every other problem I've had. The recurrent infections are because of the tipped uterus... it sits on my bladder, and combined with the swelling from the congestion it makes it difficult for me to competely void my bladder and the retention causes the infections which also contribute to the stones. (My PM doc says any decent urologist should have at least thought of that since my infections/ stone attacks get much worse around my period.) At one point my PCP doc thought I had sciatica because I was having unexplained low back pain... turns out that's a symptom of the pelvic congestion syndrome, too. My periods have also always been BRUTAL... not-able-to-get-out-of-bed-throwing-up brutal. The current combination of meds has me almost 100% pain-free. I know that I'll be on them until I decide (and my doctor agrees to) on a hysterectomy, or for the rest of my life, but it's worth it to have my life back.
Most of my family is supportive, and I am extremely grateful for that. My husband's and my mother's skepticism came from a place of love, because all they could really see was my depression at being labeled a drug seeker and a liar, so they naturally thought I was seeking to medicate that instead of the supposedly "non-existant" pain. The people who were, and continue to be, judgemental are my father and his mother. All they hear is the part where I'm taking reasonably high doses of narcotics. They don't care how much it helps or how few side-effects I have... My grandmother's arguments are, 1. SHE has never taken pain medicine! And, 2. The one time she did, it made her too hyped up to sleep and gave her hallucinations, therefore I must be having those exact same reactions and I must be liking them! My father... oy, what can I say about him. We've NEVER had a good relationship (because I loved my stepfather, which was clearly unforgivable). Also, he has very bad disc problems in his back, for which he's had an epidural injection once. He needs another one, and back surgery, which he refuses to have. They gave him Mepergan and it made him too sleepy. So instead of giving the epidural injection another try or have the surgery (he says he'll end up in a wheelchair if he has surgery--note that the doctor hasn't told him this, he's divined it out of the air) he chooses to suffer. So I'm supposed to choose to suffer too, because my medications are "highly addictive". But then, he's always believed that I have this magic ability to just walk into a doctors office and tell them what's wrong and they believe me and do whatever I ask them to do, no questions asked... for example, when I spent two months puking till I couldn't stand up and had to have my gallbladder out, he called the doctor and gave him the third degree and then informed me that the doctor "believed surgery was warranted". Well, duh, that's why I was in the hospital. To this day he doesn't believe I really needed to have my gallbladder taken out, I just asked for it and they did it.
I don't think I have a point here except to say I feel your pain, no pun intended. :) And thanks for the welcome!
Most of my family is supportive, and I am extremely grateful for that. My husband's and my mother's skepticism came from a place of love, because all they could really see was my depression at being labeled a drug seeker and a liar, so they naturally thought I was seeking to medicate that instead of the supposedly "non-existant" pain. The people who were, and continue to be, judgemental are my father and his mother. All they hear is the part where I'm taking reasonably high doses of narcotics. They don't care how much it helps or how few side-effects I have... My grandmother's arguments are, 1. SHE has never taken pain medicine! And, 2. The one time she did, it made her too hyped up to sleep and gave her hallucinations, therefore I must be having those exact same reactions and I must be liking them! My father... oy, what can I say about him. We've NEVER had a good relationship (because I loved my stepfather, which was clearly unforgivable). Also, he has very bad disc problems in his back, for which he's had an epidural injection once. He needs another one, and back surgery, which he refuses to have. They gave him Mepergan and it made him too sleepy. So instead of giving the epidural injection another try or have the surgery (he says he'll end up in a wheelchair if he has surgery--note that the doctor hasn't told him this, he's divined it out of the air) he chooses to suffer. So I'm supposed to choose to suffer too, because my medications are "highly addictive". But then, he's always believed that I have this magic ability to just walk into a doctors office and tell them what's wrong and they believe me and do whatever I ask them to do, no questions asked... for example, when I spent two months puking till I couldn't stand up and had to have my gallbladder out, he called the doctor and gave him the third degree and then informed me that the doctor "believed surgery was warranted". Well, duh, that's why I was in the hospital. To this day he doesn't believe I really needed to have my gallbladder taken out, I just asked for it and they did it.
I don't think I have a point here except to say I feel your pain, no pun intended. :) And thanks for the welcome!
DogMom22
07-28-2006, 12:49 AM
HI Cherry - I too understand your frustration and hope you will find useful tips and support on the board. I am totally frustrated currently too. I noticed BJeanne also chimed in (reluctantly) admiting and not wishing to offend anyone who suffers from chronic pain that at some point she wishedshe had cancer. I want to say I can totally relate to that. I went for about a year actually praying each night to let it be a tumor and let it be cancerous - my irrational thinking was that if it was cancer then I would be taken seriously and I would be cured (remission and out of pain) or well the other option, which would of course be that I would loose my life, but my thinking was that option was ok too, because both got me to the same thing - no more pain. Anyway, welcome - you are not alone.
bjeanne
07-28-2006, 01:37 PM
Just a quick note to DogMom. . . so sorry that you or anyone for that matter can relate. I guess we really aren't alone, are we? Too bad we couldn't find support groups (at least i cant) in my hometown. . where I could have actual friendships and be there for people who are suffering like we are and vice versa.
I just pray everyday . . . for an answer. . .for us all.
Thanks for saying that you relate Dog Mom, it helps. . .it really does. . to "hear" someone admit to feeling that way to. My heart goes out to you.
barb
I just pray everyday . . . for an answer. . .for us all.
Thanks for saying that you relate Dog Mom, it helps. . .it really does. . to "hear" someone admit to feeling that way to. My heart goes out to you.
barb