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I'm a newbie here. Thanks for listening!
Hi,
I'm new to this message board.
I think I have been struggling with this horrible illness since 1987 but was diagnosed in 2000.
In 1987 I went repeatedly to my gynocologist about pelvic pain and complaints of a possible bladder infection. The first time he said he suspected endometriosis(sp?)and did a hysterectomy. Guess what? I didn't have that. And I was only 31 at the time. After that I visited him with the same complaint and he said I had chlamydia. He prescribed antibiotics for both my husband and myself. I had no idea what this was. I was watching Good Morning America and there was a doctor talking about STD's and this was one of them. (There were many other visits in between the two.)
I was mortified. Not only that. I was furious with my husband because it could have only come from him. I knew I hadn't cheated. The t.v. doctor stated that the only way to know for sure was from a blood test. I returned to the gyno and demanded one. Guess what again? No std. Needless to say I changed doctors.
But even then every doctor suggested something other than IC. I'm not blaming them entirely. But about three years ago I finally found a good gyno and he suggested I go to see a urologist with knowledge of IC.
I came home and researched about doctors in this area with expertise on IC. I have found a wonderful doctor. He listens to me on all complaints. He has given me names of other women suffering from this that would be a good support system. With their permission, of course. I think I fell in love with him when he told me it wasn't all in my head. He did put me under and did all the tests required to show I do indeed have this. He even shows his nurses what to look for during the tests. One nurse was shocked by how bad it looked. And then he patiently explained the nature of IC. He said if you injected urine the size of your pinky fingernail into the top side of your hand it would remain swollen and burn for up to a week. Then he said just imagine the bladder that is full of these holes leaking onto the muscles! Also we know how a baby's behind would look if we left a urine soaked diaper on them for a long time.
I have a lot of aches and pains. I take elmiron and I was prescribed elavil but didn't tolerate it very well. I've had the rsmo treatments but had to stop because it inflamed the bladder even more.
Some days are better than others. Of course, each of you here know that. Because it is a hidden disease most of my relatives and friends don't understand it. So better to help them I made a paper consisting of some material I gathered from the web on IC. I tried to keep it simple and brief. They have been much more supportive and understanding since then.
I am trying very hard not to take a lot of pain meds because then I am constipated.
The most depressing for me is that I have always been very active and love working outside but find most days I can't. I even sold my lakehouse because I would be so depressed because I didn't feel like doing any water sports.
But today is a good day and I'm thankful for that. And I am so grateful to have a wonderful and patient husband. My doctor told me he has had several women whose marriages have broken up because of this disease. So sad!
I am so glad I found you all. I feel like now I will have some friends who can really relate.
Thanks,
Cee
I'm new to this message board.
I think I have been struggling with this horrible illness since 1987 but was diagnosed in 2000.
In 1987 I went repeatedly to my gynocologist about pelvic pain and complaints of a possible bladder infection. The first time he said he suspected endometriosis(sp?)and did a hysterectomy. Guess what? I didn't have that. And I was only 31 at the time. After that I visited him with the same complaint and he said I had chlamydia. He prescribed antibiotics for both my husband and myself. I had no idea what this was. I was watching Good Morning America and there was a doctor talking about STD's and this was one of them. (There were many other visits in between the two.)
I was mortified. Not only that. I was furious with my husband because it could have only come from him. I knew I hadn't cheated. The t.v. doctor stated that the only way to know for sure was from a blood test. I returned to the gyno and demanded one. Guess what again? No std. Needless to say I changed doctors.
But even then every doctor suggested something other than IC. I'm not blaming them entirely. But about three years ago I finally found a good gyno and he suggested I go to see a urologist with knowledge of IC.
I came home and researched about doctors in this area with expertise on IC. I have found a wonderful doctor. He listens to me on all complaints. He has given me names of other women suffering from this that would be a good support system. With their permission, of course. I think I fell in love with him when he told me it wasn't all in my head. He did put me under and did all the tests required to show I do indeed have this. He even shows his nurses what to look for during the tests. One nurse was shocked by how bad it looked. And then he patiently explained the nature of IC. He said if you injected urine the size of your pinky fingernail into the top side of your hand it would remain swollen and burn for up to a week. Then he said just imagine the bladder that is full of these holes leaking onto the muscles! Also we know how a baby's behind would look if we left a urine soaked diaper on them for a long time.
I have a lot of aches and pains. I take elmiron and I was prescribed elavil but didn't tolerate it very well. I've had the rsmo treatments but had to stop because it inflamed the bladder even more.
Some days are better than others. Of course, each of you here know that. Because it is a hidden disease most of my relatives and friends don't understand it. So better to help them I made a paper consisting of some material I gathered from the web on IC. I tried to keep it simple and brief. They have been much more supportive and understanding since then.
I am trying very hard not to take a lot of pain meds because then I am constipated.
The most depressing for me is that I have always been very active and love working outside but find most days I can't. I even sold my lakehouse because I would be so depressed because I didn't feel like doing any water sports.
But today is a good day and I'm thankful for that. And I am so grateful to have a wonderful and patient husband. My doctor told me he has had several women whose marriages have broken up because of this disease. So sad!
I am so glad I found you all. I feel like now I will have some friends who can really relate.
Thanks,
Cee
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