Here is the link to the main web site for the National Kidney and Urological Clearing House. It's some of the best information I've been able to find to date. http://kidney.niddk.nih.gov/
Then, here's the direct link to the area on the site that I think you should read http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/index.htm
This is what my gut is telling me that I probably have. It's called interstitial cystitis. It occurs more frequently in younger women. This is what I was told by the nurse that was doing an ultra sound on my bladder last week. Actually, one of the nurses at Mayo has IC. I actually asked the nurse that was doing my ultra sound to give my card to the nurse suffering with IC and have her post on the site. We need other women who have this condition to help us. Tell us what they're doing and how they were diagnosed. Also, what they do now to keep it under control.
When reading this information.... I kept thinking, this is me. There are some things they can do to treat it but the first thing you should do is change your diet. Here are the list of foods and beverages that you should stay away from...This is what I'm doing right now and it seems to be helping a bit.
THIS COMES DIRECTLY FROM THE NATIONAL KIDNEY UROLOGICAL DISEASE CLEARING HOUSE WEB SITE...
Diet
No scientific evidence links diet to IC/PBS, but many doctors and patients find that alcohol, tomatoes, spices, chocolate, caffeinated and citrus beverages, and high-acid foods may contribute to bladder irritation and inflammation. Some people also note that their symptoms worsen after eating or drinking products containing artificial sweeteners. Eliminating various items from the diet and reintroducing them one at a time may determine which, if any, affect a person’s symptoms. However, maintaining a varied, well-balanced diet is important.
Smoking
Many people feel smoking makes their symptoms worse. How the by-products of tobacco that are excreted in the urine affect IC/PBS is unknown. Smoking, however, is the major known cause of bladder cancer. One of the best things smokers can do for their bladder and their overall health is to quit.
Exercise
Many patients feel that gentle stretching exercises help relieve IC/PBS symptoms.
Bladder Training
Here are some ways to help your bladder and maybe take some of the fear away.....
People who have found adequate relief from pain may be able to reduce frequency by using bladder training techniques. Methods vary, but basically patients decide to void—empty their bladder—at designated times and use relaxation techniques and distractions to keep to the schedule. Gradually, they try to lengthen the time between scheduled voids. A diary in which to record voiding times is helpful in keeping track of progress.
Picture of a bladder diary used to record trips to the bathroom and accidental losses of urine. The diary is a chart with columns for time, fluid intake, trips to the bathroom, accidental leaks, level of urgency, and activity.
There is so much information on the site about controlling the bladder and other related topics. Please take a look. I think this will help ease your fears a little bit and give you some insight as to what's going on with you and what you can do to help relieve some of the stress.
You need to find ways to destress. I need to do the same. It's easier said then done I'm afraid. There's been a lot of stress with me starting the company. I work long hours and am traveling a lot. Also, I'm trying to help as many women as I can. I drink way too much coffee which is not helping my bladder at all. So, I've cut way back and am drinking more water. If you're a coffee drinker, you need to cut way back or eliminate it from your diet all together.
If you smoke, that is irritating your bladder as well. It's the lining of the bladder that gets irritated and causes the problem.
You could also have something going on with the opening of the bladder, the urethra and or it could even be hormonal. If we don't have enough estrogen in our bodies that can lead to bladder issues. You usually see this in peri-menopausal women and menopausal women...but one never knows.
Mary, you have to look at all the things that could be wrong. Maybe you have a prolapsed bladder?? That's what I thought I had.
I am much more uncomfortable when I sit. There's so much pressure and I have to pee all night long. I can go up to 20 times in the evening. Something about laying down that causes me more aggravation and pressure then anytime during the day.
Let me know if there's something more I can do for you. I will let keep you and every one else abreast as to what they finally diagnosis me with.
I would be remiss if I didn't give you the crisis center hot line number....just in case. You can call them 24 hours a day... 1-800-273-TALK.
Let me know how you're doing, Mary. Please let me know if any of this information is helpful to you. We at EmpowHer are here for you, along with so many other women who are coming to our site. This is exactly why I created EmpowHer, for women to be able to connect with other women about their condition and or disease and seek validation and resources. We need to support one another and help one another. I hope we've helped you, today.
Comment Reply
Hi Mary,
Here is the link to the main web site for the National Kidney and Urological Clearing House. It's some of the best information I've been able to find to date.
http://kidney.niddk.nih.gov/
Then, here's the direct link to the area on the site that I think you should read
http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/index.htm
This is what my gut is telling me that I probably have. It's called interstitial cystitis. It occurs more frequently in younger women. This is what I was told by the nurse that was doing an ultra sound on my bladder last week. Actually, one of the nurses at Mayo has IC. I actually asked the nurse that was doing my ultra sound to give my card to the nurse suffering with IC and have her post on the site. We need other women who have this condition to help us. Tell us what they're doing and how they were diagnosed. Also, what they do now to keep it under control.
When reading this information.... I kept thinking, this is me. There are some things they can do to treat it but the first thing you should do is change your diet. Here are the list of foods and beverages that you should stay away from...This is what I'm doing right now and it seems to be helping a bit.
THIS COMES DIRECTLY FROM THE NATIONAL KIDNEY UROLOGICAL DISEASE CLEARING HOUSE WEB SITE...
Diet
No scientific evidence links diet to IC/PBS, but many doctors and patients find that alcohol, tomatoes, spices, chocolate, caffeinated and citrus beverages, and high-acid foods may contribute to bladder irritation and inflammation. Some people also note that their symptoms worsen after eating or drinking products containing artificial sweeteners. Eliminating various items from the diet and reintroducing them one at a time may determine which, if any, affect a person’s symptoms. However, maintaining a varied, well-balanced diet is important.
Smoking
Many people feel smoking makes their symptoms worse. How the by-products of tobacco that are excreted in the urine affect IC/PBS is unknown. Smoking, however, is the major known cause of bladder cancer. One of the best things smokers can do for their bladder and their overall health is to quit.
Exercise
Many patients feel that gentle stretching exercises help relieve IC/PBS symptoms.
Bladder Training
Here are some ways to help your bladder and maybe take some of the fear away.....
People who have found adequate relief from pain may be able to reduce frequency by using bladder training techniques. Methods vary, but basically patients decide to void—empty their bladder—at designated times and use relaxation techniques and distractions to keep to the schedule. Gradually, they try to lengthen the time between scheduled voids. A diary in which to record voiding times is helpful in keeping track of progress.
Picture of a bladder diary used to record trips to the bathroom and accidental losses of urine. The diary is a chart with columns for time, fluid intake, trips to the bathroom, accidental leaks, level of urgency, and activity.
There is so much information on the site about controlling the bladder and other related topics. Please take a look. I think this will help ease your fears a little bit and give you some insight as to what's going on with you and what you can do to help relieve some of the stress.
You need to find ways to destress. I need to do the same. It's easier said then done I'm afraid. There's been a lot of stress with me starting the company. I work long hours and am traveling a lot. Also, I'm trying to help as many women as I can. I drink way too much coffee which is not helping my bladder at all. So, I've cut way back and am drinking more water. If you're a coffee drinker, you need to cut way back or eliminate it from your diet all together.
If you smoke, that is irritating your bladder as well. It's the lining of the bladder that gets irritated and causes the problem.
You could also have something going on with the opening of the bladder, the urethra and or it could even be hormonal. If we don't have enough estrogen in our bodies that can lead to bladder issues. You usually see this in peri-menopausal women and menopausal women...but one never knows.
Mary, you have to look at all the things that could be wrong. Maybe you have a prolapsed bladder?? That's what I thought I had.
I am much more uncomfortable when I sit. There's so much pressure and I have to pee all night long. I can go up to 20 times in the evening. Something about laying down that causes me more aggravation and pressure then anytime during the day.
Let me know if there's something more I can do for you. I will let keep you and every one else abreast as to what they finally diagnosis me with.
I would be remiss if I didn't give you the crisis center hot line number....just in case. You can call them 24 hours a day... 1-800-273-TALK.
Let me know how you're doing, Mary. Please let me know if any of this information is helpful to you. We at EmpowHer are here for you, along with so many other women who are coming to our site. This is exactly why I created EmpowHer, for women to be able to connect with other women about their condition and or disease and seek validation and resources. We need to support one another and help one another. I hope we've helped you, today.
Best in health,
Michelle
October 12, 2008 - 11:56amThis Comment
Reply