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Hello there,
First of all thanks for having this web site, I have been reading all kinds of info and reading everyones ideas and stories and it is so nice to know that there are others that have what I have. I was starting to feel it was all in my head because I would go to this doctor and that doctor and they would either say the Urinalisis came back negative and I would insist on the pyriduim to help the pain and then take the macrobid also. I have had to have a hysterectomy because back in 1996 I had endometriosis so they took everything including my appendix. I have been to so many doctors over the years and on so many differnt medications and all they did was make me have nausea. My what I thought were bladder infections were getting more and more often, I would just get over one and then bam here would be another. I have had several tests over the years, they filled me up with fluid and made me pee and stop and pee , they filled my bladder with some dye , they snipped a sample, they did a balloon test on me they also took a flat scan xray, they did a ultrasound and all of this is very expensive because I don't have insurance. Anyway the last time I had a bad flare up was 2 weeks ago on a Saturday I was just thinking I was going crazy in pain, sweating and nausea, urethra felt like someone had a blow torch in it constant, peeing all the time if I would have had insurance I would have had my husband take me to Hospital. Instead I toughed it out and used my emergency supply of pyriduim but that did not even help this time. So I made my mind up that I would get to the bottom of this pain once and for all I HAD HAD IT !! I was sick of being sick. I went to 3 more doctors in a week and 1/2 and non of them could find anything fianally I went to a 4th doctor and she was another urologist in Seattle Virginia Mason Hospital, but she was not like all the others I had seen over the last 28 yrs . She really took her time and took all my history and asked so many questions and finally she examined me and told me I have IC and told me it was a uncureable diesese and that scared the heck out of me but she told me that alot of it had to do with diet and I would get to feeling better, maybe not all the way back to my old self but I would be better than what I was. I was so happy she knew what I was discribing to her all my symptoms as she asked questions and I was excited because she was asking me stuff that I thought hey she knows what I have been feeling like and where I was having pain and that it was real and not in my head. So I started to cry of course because that is what I do when I am happy and I gave her the BIGGEST HUG because for once I felt someone GOT IT ! So she put me on elmiron 3 x a day, and oxybutynin 3 times a day and , lidocaine when needed for pain down there, and also estrace hormone because I was so low on estrogen. She also told me about your web site and told me to go on line and read everything I could read and she hooked me up with a support group that meets once a month so I will start that next month. I got on line and found several good books I ordered to help me understand this IC even better. I have totally changed my diet, I thought all these years I was a pretty healthy eater but I have found out that I was eating so much fast food and out of the box food that is laced in chemicals. Now I am just starting my second week on the IC diet of just the stuff that definitely will not upset your bladder, I don't want to add any thing that might cause a flare yet. I have been feeling alittle better and atleast I am off the couch. I still get really tired and have that stabbing pain constant on my lower left side and the constant peeing even 2 times a nite and my urethera has small flares even on the very strictest diet but I am not going to add anything that might make it worse. I will experiment in a few weeks to see what makes me flare and what doesn't. I do have a question what type of vitamins can we take I went to the health food store today and ended up not getting any vitamins because I wanted a multipal and there are non without vitamin B and C does anyone have any brand name that they use that does not cause flares? Well thank you for letting me join in on your website. I hope some of you other girls were diagnosed sooner than I was that is crazy to suffer all those years and all the differnt doctors that do not even no about IC. It is just so unfair, they make you feel like you are crazy. Well I am glad I now have others I can talk to and they can relate. Please excuse my spelling.
Thanks for letting me tell my long wind bag story.
God Bless you all
Connie
First of all thanks for having this web site, I have been reading all kinds of info and reading everyones ideas and stories and it is so nice to know that there are others that have what I have. I was starting to feel it was all in my head because I would go to this doctor and that doctor and they would either say the Urinalisis came back negative and I would insist on the pyriduim to help the pain and then take the macrobid also. I have had to have a hysterectomy because back in 1996 I had endometriosis so they took everything including my appendix. I have been to so many doctors over the years and on so many differnt medications and all they did was make me have nausea. My what I thought were bladder infections were getting more and more often, I would just get over one and then bam here would be another. I have had several tests over the years, they filled me up with fluid and made me pee and stop and pee , they filled my bladder with some dye , they snipped a sample, they did a balloon test on me they also took a flat scan xray, they did a ultrasound and all of this is very expensive because I don't have insurance. Anyway the last time I had a bad flare up was 2 weeks ago on a Saturday I was just thinking I was going crazy in pain, sweating and nausea, urethra felt like someone had a blow torch in it constant, peeing all the time if I would have had insurance I would have had my husband take me to Hospital. Instead I toughed it out and used my emergency supply of pyriduim but that did not even help this time. So I made my mind up that I would get to the bottom of this pain once and for all I HAD HAD IT !! I was sick of being sick. I went to 3 more doctors in a week and 1/2 and non of them could find anything fianally I went to a 4th doctor and she was another urologist in Seattle Virginia Mason Hospital, but she was not like all the others I had seen over the last 28 yrs . She really took her time and took all my history and asked so many questions and finally she examined me and told me I have IC and told me it was a uncureable diesese and that scared the heck out of me but she told me that alot of it had to do with diet and I would get to feeling better, maybe not all the way back to my old self but I would be better than what I was. I was so happy she knew what I was discribing to her all my symptoms as she asked questions and I was excited because she was asking me stuff that I thought hey she knows what I have been feeling like and where I was having pain and that it was real and not in my head. So I started to cry of course because that is what I do when I am happy and I gave her the BIGGEST HUG because for once I felt someone GOT IT ! So she put me on elmiron 3 x a day, and oxybutynin 3 times a day and , lidocaine when needed for pain down there, and also estrace hormone because I was so low on estrogen. She also told me about your web site and told me to go on line and read everything I could read and she hooked me up with a support group that meets once a month so I will start that next month. I got on line and found several good books I ordered to help me understand this IC even better. I have totally changed my diet, I thought all these years I was a pretty healthy eater but I have found out that I was eating so much fast food and out of the box food that is laced in chemicals. Now I am just starting my second week on the IC diet of just the stuff that definitely will not upset your bladder, I don't want to add any thing that might cause a flare yet. I have been feeling alittle better and atleast I am off the couch. I still get really tired and have that stabbing pain constant on my lower left side and the constant peeing even 2 times a nite and my urethera has small flares even on the very strictest diet but I am not going to add anything that might make it worse. I will experiment in a few weeks to see what makes me flare and what doesn't. I do have a question what type of vitamins can we take I went to the health food store today and ended up not getting any vitamins because I wanted a multipal and there are non without vitamin B and C does anyone have any brand name that they use that does not cause flares? Well thank you for letting me join in on your website. I hope some of you other girls were diagnosed sooner than I was that is crazy to suffer all those years and all the differnt doctors that do not even no about IC. It is just so unfair, they make you feel like you are crazy. Well I am glad I now have others I can talk to and they can relate. Please excuse my spelling.
Thanks for letting me tell my long wind bag story.
God Bless you all
Connie
Connie
:Loren
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