jeanniebug
04-21-2004, 05:19 PM
Hi all, I just thought I would share my story. I am 34 years old, and about to move and become active in the support group in Nashville, TN (I hope), and have been lurking the boards since Sept. '03. So I figured it was time to share my story.
I have had pelvic pain since I started my period when I was 12 years old..very bad pelvic pain. During my period, I would have frequency that was really bad. I never really suffered from UTI's and was diagnosed with endometriosis at an early age. I had 3 laparascopies (sp?) in my early 20's to remove the endo. When I turned 31, I developed horrible leg pain. It was so unbearable it would keep me up at night, and I would have to sleep with my legs up on pillows. Being a newlywed Army wife at this time, and having just moved and started a new job, I was very freaked out. So began the doctor merry-go-round for me. I started at my family doctor, who had me have a full work up from a gynecologist, a gastroentologist, and a rheumatology expert. The rheumatologist diagnosed bursitis in my legs, and had me start regular injections of steriods into my legs. He also had me taking prednisone. (a steroid) Eventually I had to be taken off these meds, because of the long term problems they can cause. My pelvic and leg pain were so bad, I could not even walk through the grocery store. Well I was convinced this all had something to do with my reproductive organs, so I went to about 10 different ob/gyn's with my symptoms. (Because alot of them were the same symptoms of endometriosis..I thought it was back) The last ob/gyn I went to FINALLY decided to do another laparoscopy. He said I had the worst prolapsed uteris he had ever seen in a person my age, and I've never had kids so he could not find a reason for this. He swore that my quality of life would improve 200%, if I had a hysterectomy. I did not get a 2nd opinion. :headbang: I didn't think I needed one, this seemed to be the answer to all my pain issues. I was in so much pain, I was not even upset about the hysterectomy. I just wanted to get the source of it out of me. I then had an abdominal hysterectomy, and they left my ovaries because of my age. I woke up from the surgery with a catheter, and was in alot of pain but didn't feel any bladder problems because of the catheter. I had always seemed to have to pee alot, my whole life, but not more than maybe 8 or 9 times a day, so I just wrote is off as having a "small bladder." I can also remember having a year in kindergarten, where I had so much frequency my teacher spoke to my mom about it. She took me to the doctor and I didn't have a UTI, they never did figure out why I had to go so much that year. I can remember coming out of the bathroom, and 5 minutes later having to tell my teacher I had to go again. She looked at me like I was a nut case. Anyway, the second they removed this catheter in the hospital, I was in EXCRUCIATING pain. It was so bad I was hysterical. Right at that moment they were wheeling in a new room-mate into my room, who had Chrone's disease and had just had surgery. All the nurses were occupied helping get her hooked up to everything. Now that it's over and my head is clear, I know that girl needed all the help on the floor at the time, and I tried to be patient. But, my pain meds were overdue and the pain was so bad I was sick and about to pass out. My husband went to tell the nurse..because I had been sitting on the toilet for 2 hours with a full bladder and could NOT PEE for anything in the world. As luck would have it, my surgeon was on vacation and could not be reached, so they had to call some fill-in dude I had never met. He told them to give me Pyridium. It didn't help. I finally got hysterical and told my husband to check me out of the hospital, because I had codeine at home. :D Of course this did not fly. I was stuck with a very rude nurse Ratchett who proceeded to sit me down, and ask me if there was "anything else going on..besides my pain?" She asked me this as if I had some severe mental problem. I told her no, nothing outside my excrutiating pain and having been cut in half in my abdomen less than 48 hours ago, and she was 4 hours late giving me a pain shot, therefore I could feel all of it, other than that I was doing great! She finally got off her shift and the nice nurse came back and was very good to me. I wrote a letter to the hospital about that witch and never heard back from them. They told me to expect post-op pain for up to 6 weeks. They told me to walk alot and not lift anything. I followed the doc's advise to the letter and walked my brains out. The pain and swelling never went away. My surgeon only extended my leave from work by 2 weeks, and when I went back, I was still in terrible pain. I was exhausted from all the drama and pain, and had to work my sit down travel agent job 8 hours a day in a very fast paced office. My co-workers were not empathetic, and I was not able to let on the problems I was having. I would not have anyway..it's just not that type of environment. After 6 months of pain my hyst surgeon finally told me to go see a urologist because he could not help me. I went to one and he immediately scheduled a cystoscopy. After it was over he told me I had IC. I was relieved to find out what it was, but horrified that this pain might not ever go away for good. This is the same uro I've been dealing with from the start, he put me on Elmiron 7 months ago and nothing else. He told me he does not do alternative treatments such as DMSO etc. He didn't even want to try the Elavil or anything but the Elmiron. Since then I've seen a 2nd uro. He does DMSO and other treatments but, since my husband is in the Army and we are moving in 6 weeks, he did not want to start me on that. He suggested I try to get treatments from a new uro once we move. I am seeing a 3rd uro tomorrow, because the pain is so bad lately I can't stand it. My family doc is an angel and started me on the Elavil for the pain, and gives me 15 codeine tabs at a time for extreme flare ups, and monitors the pain meds. Once we move in 6 weeks I'm losing my work insurance since I'm leaving my job, and starting on Tricare..the military insurance. I'll have to see a doc on the Army base and get referrals to specialists like the new uro. I've heard aweful things about military docs..that they do the bare minimum for patients. I guess we'll see. I have my cystoscopy report ready to show them to verify I have IC. Also...my family doc is the ONLY doc who would give me pain meds for my flare ups. I am nervous that none of these new docs will do this for me. It's all alot to deal with and I'm scared. :hiding: Well this all sounds really negative but the good news is, my husband and I have decided that I should leave my job for awhile. The pain and frequent trips to the bathroom have become too much to handle on top of a stressful job. We've worked very hard this year to pay off our bills so I could do this. Even with the bills paid off, money will be tight. Also, the area I'm moving to does have an IC support group, and I can drive into the Nashville area to attend. I've tried Cysta-Q for several months which didn't help, and I'm going to try the CystoProtek (sp?) after we get settled. My husband is leaving for Korea for 1 year in July..and I am hoping with some rest and research, I will be able to find my groove with this IC while he is gone. Sorry my story is so long..but that's me in a nutshell, and it does feel good to get it all off my chest. By the way, my docs are now saying the hysterectomy was not the source of my pain, and not necessary. Nice, eh? Lucky for them, they made me sign a big statement saying I would never sue them, prior to the hysterectomy. Thanks for reading my novel!!! :D
I have had pelvic pain since I started my period when I was 12 years old..very bad pelvic pain. During my period, I would have frequency that was really bad. I never really suffered from UTI's and was diagnosed with endometriosis at an early age. I had 3 laparascopies (sp?) in my early 20's to remove the endo. When I turned 31, I developed horrible leg pain. It was so unbearable it would keep me up at night, and I would have to sleep with my legs up on pillows. Being a newlywed Army wife at this time, and having just moved and started a new job, I was very freaked out. So began the doctor merry-go-round for me. I started at my family doctor, who had me have a full work up from a gynecologist, a gastroentologist, and a rheumatology expert. The rheumatologist diagnosed bursitis in my legs, and had me start regular injections of steriods into my legs. He also had me taking prednisone. (a steroid) Eventually I had to be taken off these meds, because of the long term problems they can cause. My pelvic and leg pain were so bad, I could not even walk through the grocery store. Well I was convinced this all had something to do with my reproductive organs, so I went to about 10 different ob/gyn's with my symptoms. (Because alot of them were the same symptoms of endometriosis..I thought it was back) The last ob/gyn I went to FINALLY decided to do another laparoscopy. He said I had the worst prolapsed uteris he had ever seen in a person my age, and I've never had kids so he could not find a reason for this. He swore that my quality of life would improve 200%, if I had a hysterectomy. I did not get a 2nd opinion. :headbang: I didn't think I needed one, this seemed to be the answer to all my pain issues. I was in so much pain, I was not even upset about the hysterectomy. I just wanted to get the source of it out of me. I then had an abdominal hysterectomy, and they left my ovaries because of my age. I woke up from the surgery with a catheter, and was in alot of pain but didn't feel any bladder problems because of the catheter. I had always seemed to have to pee alot, my whole life, but not more than maybe 8 or 9 times a day, so I just wrote is off as having a "small bladder." I can also remember having a year in kindergarten, where I had so much frequency my teacher spoke to my mom about it. She took me to the doctor and I didn't have a UTI, they never did figure out why I had to go so much that year. I can remember coming out of the bathroom, and 5 minutes later having to tell my teacher I had to go again. She looked at me like I was a nut case. Anyway, the second they removed this catheter in the hospital, I was in EXCRUCIATING pain. It was so bad I was hysterical. Right at that moment they were wheeling in a new room-mate into my room, who had Chrone's disease and had just had surgery. All the nurses were occupied helping get her hooked up to everything. Now that it's over and my head is clear, I know that girl needed all the help on the floor at the time, and I tried to be patient. But, my pain meds were overdue and the pain was so bad I was sick and about to pass out. My husband went to tell the nurse..because I had been sitting on the toilet for 2 hours with a full bladder and could NOT PEE for anything in the world. As luck would have it, my surgeon was on vacation and could not be reached, so they had to call some fill-in dude I had never met. He told them to give me Pyridium. It didn't help. I finally got hysterical and told my husband to check me out of the hospital, because I had codeine at home. :D Of course this did not fly. I was stuck with a very rude nurse Ratchett who proceeded to sit me down, and ask me if there was "anything else going on..besides my pain?" She asked me this as if I had some severe mental problem. I told her no, nothing outside my excrutiating pain and having been cut in half in my abdomen less than 48 hours ago, and she was 4 hours late giving me a pain shot, therefore I could feel all of it, other than that I was doing great! She finally got off her shift and the nice nurse came back and was very good to me. I wrote a letter to the hospital about that witch and never heard back from them. They told me to expect post-op pain for up to 6 weeks. They told me to walk alot and not lift anything. I followed the doc's advise to the letter and walked my brains out. The pain and swelling never went away. My surgeon only extended my leave from work by 2 weeks, and when I went back, I was still in terrible pain. I was exhausted from all the drama and pain, and had to work my sit down travel agent job 8 hours a day in a very fast paced office. My co-workers were not empathetic, and I was not able to let on the problems I was having. I would not have anyway..it's just not that type of environment. After 6 months of pain my hyst surgeon finally told me to go see a urologist because he could not help me. I went to one and he immediately scheduled a cystoscopy. After it was over he told me I had IC. I was relieved to find out what it was, but horrified that this pain might not ever go away for good. This is the same uro I've been dealing with from the start, he put me on Elmiron 7 months ago and nothing else. He told me he does not do alternative treatments such as DMSO etc. He didn't even want to try the Elavil or anything but the Elmiron. Since then I've seen a 2nd uro. He does DMSO and other treatments but, since my husband is in the Army and we are moving in 6 weeks, he did not want to start me on that. He suggested I try to get treatments from a new uro once we move. I am seeing a 3rd uro tomorrow, because the pain is so bad lately I can't stand it. My family doc is an angel and started me on the Elavil for the pain, and gives me 15 codeine tabs at a time for extreme flare ups, and monitors the pain meds. Once we move in 6 weeks I'm losing my work insurance since I'm leaving my job, and starting on Tricare..the military insurance. I'll have to see a doc on the Army base and get referrals to specialists like the new uro. I've heard aweful things about military docs..that they do the bare minimum for patients. I guess we'll see. I have my cystoscopy report ready to show them to verify I have IC. Also...my family doc is the ONLY doc who would give me pain meds for my flare ups. I am nervous that none of these new docs will do this for me. It's all alot to deal with and I'm scared. :hiding: Well this all sounds really negative but the good news is, my husband and I have decided that I should leave my job for awhile. The pain and frequent trips to the bathroom have become too much to handle on top of a stressful job. We've worked very hard this year to pay off our bills so I could do this. Even with the bills paid off, money will be tight. Also, the area I'm moving to does have an IC support group, and I can drive into the Nashville area to attend. I've tried Cysta-Q for several months which didn't help, and I'm going to try the CystoProtek (sp?) after we get settled. My husband is leaving for Korea for 1 year in July..and I am hoping with some rest and research, I will be able to find my groove with this IC while he is gone. Sorry my story is so long..but that's me in a nutshell, and it does feel good to get it all off my chest. By the way, my docs are now saying the hysterectomy was not the source of my pain, and not necessary. Nice, eh? Lucky for them, they made me sign a big statement saying I would never sue them, prior to the hysterectomy. Thanks for reading my novel!!! :D