chsmile2
07-29-2008, 09:46 AM
:help: Hi, I am a 28 year Female and am living with I.C. It has been a year since I first started having issues with my bladder. I remember the day as if it was yesterday. If only I could go back to that day and do things differently, maybe it wouldn’t have ever shown up. I happened to have been on vacation and was out enjoying my day when I got a Mocha at a café and within an hour I was cramping, having sensations of wanting to pee really bad, and then my body got sweaty. From that point on my bladder has been a NIGHTMARE!!!!!
I first want to say that I personally don’t really feel it is so much my bladder that has the issue. I believe it is more so in the neck of the bladder the Urethra area. I started having sudden urges to void so bad that I would be holding myself as if I was a child. While holding myself it felt as if I had a heart beat. I later learned I was having spasms. I have always gone to the bathroom a lot, but this was defiantly different.
My first doctors visit was to my family doctor. I had made the appointment for bad allergies and the urges to void. She then prescribed Detrol for me and Zyrtex for my allergies. She gave me Detrol thinking of only having a over active bladder. I took the medicine home, but was in denial of having such an issue and that it would pass. I then proceeded to go on another trip which I dreaded getting on the plane. It was torture when that seatbelt sign came on! While on my trip my situation worsened to the point where I had to see a doctor. (I had left the Detrol at home.) The second doctor then sent me on my way with Detrol, again. I then got the clue that I might have an issue. WOW!!!!!! Detrol was the worst thing ever to have happen to me since the whole ordeal began. I was going to the bathroom triple the times. I stopped taking Detrol 2 days into it, per doctors orders. He then explained to me that everyone response different to medicine.
It just amazes me how after seeing two doctors not one referred or mentioned I might want to see a urologist. When arriving home from my trip I decided to do research on the best invention ever the internet. This is where I learned I needed to see a urologist. So I did a month after having symptoms. The appointment was very routine. The doctor really didn’t believe I had I.C., so he sent me home with some other medicine (I can’t recall what medicine though). Whatever it was it didn’t work! The doctor then sent me to get an ultrasound of my bladder and for that you have to hold a lot of water in your bladder to get a good look. I just couldn’t hold all of the water they needed for that amount of time and when I sat down into the doctors chair the nurse was so mad at me for not having a full bladder. I then had a melt down and started crying because I just couldn’t fathom the thought of dealing with this for my whole life. The ultrasound came back with nothing wrong. He then gave me information on I.C., but wouldn’t conclude that I indeed had I.C. and prescribed yet another medicine which didn’t work. What did help a tiny bit was baking soda and water and taking my Zyrtex. He later prescribed Vesicare which worked for awhile, but still never completely taking away that fullness I felt in my urethra. So I went on a new hunt for a new doctor and more information.
After discovering that I might have I.C. I found this website and it really opened my eyes to what is going on with me. Everyone’s stories were helpful and gave me more of a direction in finding what works for me. My urologist was of “no” use to me, so I made an appointment with a new doctor Dr. Sharon L. Boyer. Honestly she is the best thing that has ever entered my life. She specializes in Urogynecology. I had to wait 8 months to see her, but after my first visit I knew she was going to get to the bottom of my issues.
My first appointment with Dr. Boyer was a consultation to go over a very detailed packet she had me fill out. She wanted to know everything!!!! Dr. Boyer made me think that I wasn’t crazy that it would get better. With that feeling of comfort I just blurted out everything I was feeling and going through. We talked for 2 hours. What doctor these days spends 2 hours with one patient and gives you their total attention. I had finally found a doctor that is going to make a miracle. She then sent me home with homework.
The second visit, was the scopes and electro machine testing. I got to see my bladder and the inflamation of I.C. She also discovered that herpes had entered my urethra area and could be the cause of my some of my symptoms. I knew I had herpes, but I never had outbreaks like you see on the internet, so didn’t think I needed to be put on suppressive medicine, such as Valtrex.. I never knew it could spread to my urethra area and/or my bladder. With the virus spreading to my urethra it caused nerve damage resulting in my spasms in the urethra. She says she sees this correlation on a daily basis in patients.
The third visit, we went over the charts from the machines and she indeed agreed that I have I.C and have severe nerve damage. Dr. Boyer gave me a lot of info of things that might be a factor in I.C.. She then wrote prescriptions for Valtrex 500mg, Lyrica 150mg 2x daily, prosed/ds and OTC Aloe Vera capsules, Zyrtex and Prelief. I was to also eat only the foods on the I.C. diet. Fun stuff!!! My major problem foods are CAFFEINE, ARTIFICIAL SWEETENER, ALL DIET DRINKS, TEA, COFFEE, STRAWBERRIES, CITRUS FRUIT, and lastly CHOCOLATE (I have a hard time staying away from the chocolate).
When starting the medicine I was looking for instant results, boy was I disappointed. The Lyrica made me dizzy, reading was blurry, my body felt really hot at night, anxiety and really didn’t seem to improve my voiding issue. My number one problem with Lyrica was the weight gain. I have always work outed about 3 times a week and ran marathons and I have never seen my weight reach the numbers it did. I gained about 10 pound in a week. I was bloated! I didn’t gain much more weight, but it was devastating seeing myself so bloated and the numbers on the scale. Dr. Boyer insisted I keep taking the Lyrica. I was also taking the Prosed, but started to notice after taking it, it would make me start having voiding sensations. Dr. Boyer told me to discontinue the use of prosed and that some people are sensitive to this medicine. After taking the Lyrica and my other medicines listed above for about 3 months I started to see an improvements. My urges were drastically down the feeling of fullness in my urethra was minimal.
As much as I wanted my voiding issue fixed. I also wanted to see what other medicines compared to Lyrica without the weight gain and went to my doctor with idea of trying Topamax after reading about some people using it on this website. She hesitantly wrote me a prescription for Topamax. Topamax was in the same medicine category as Lyrica, so what difference would it make if I switch to the one that made me lose weight not gain. I will tell you why Topamax did not work for me. Within two days of taking Topamax I started having major anxiety attacks. I couldn’t even put make-up on. I was having many of the same issues as Lyrica in the beginning, so I thought no big deal it will pass. Well, after a week on it I was feeling like I was having a UTI, but I wasn’t. My mood had changed drastically! I had no desire to do anything besides sit on the couch. I was so depressed! My boyfriend was noticing a change in my mood. Its like I had flat lined! At the time of taking it I would have told you, you were crazy and that I was fine. Two weeks into taking Topamax I had enough, the Topamax wasn’t helping my voiding and made me feel like I had UTI’s. Dr. Boyer had me stop the medicine right away and two days later I felt like the rain cloud had lifted. I have since gone back on Lyrica and am trying to get back to the feeling I had before I decided to switch to Topamax. Topamax made my brain all foggy and I wouldn’t recommend it!
It has now been a week since going back on Lyrica 150mgs along with the above list. I since added one 600mg calcium and D vitamins. I must say I am starting to feel comfort. Dr. Boyer has set up an appointment for me to get Heparin in two weeks. She has also increased my Lyrica to 200mgs 2x daily. I felt 150mg wasn’t enough for me. By accident I took 2 in the morning one day and to my surprise I felt more control over my issue.
Well, I can only hope that my story can up someone! As did other peoples stories for me. Thanks for everyone that has taken time to write their experience and trials of medications. I have learned a lot and will give as much information as I can from my experience. Thanks!!!!!! :pray:
I first want to say that I personally don’t really feel it is so much my bladder that has the issue. I believe it is more so in the neck of the bladder the Urethra area. I started having sudden urges to void so bad that I would be holding myself as if I was a child. While holding myself it felt as if I had a heart beat. I later learned I was having spasms. I have always gone to the bathroom a lot, but this was defiantly different.
My first doctors visit was to my family doctor. I had made the appointment for bad allergies and the urges to void. She then prescribed Detrol for me and Zyrtex for my allergies. She gave me Detrol thinking of only having a over active bladder. I took the medicine home, but was in denial of having such an issue and that it would pass. I then proceeded to go on another trip which I dreaded getting on the plane. It was torture when that seatbelt sign came on! While on my trip my situation worsened to the point where I had to see a doctor. (I had left the Detrol at home.) The second doctor then sent me on my way with Detrol, again. I then got the clue that I might have an issue. WOW!!!!!! Detrol was the worst thing ever to have happen to me since the whole ordeal began. I was going to the bathroom triple the times. I stopped taking Detrol 2 days into it, per doctors orders. He then explained to me that everyone response different to medicine.
It just amazes me how after seeing two doctors not one referred or mentioned I might want to see a urologist. When arriving home from my trip I decided to do research on the best invention ever the internet. This is where I learned I needed to see a urologist. So I did a month after having symptoms. The appointment was very routine. The doctor really didn’t believe I had I.C., so he sent me home with some other medicine (I can’t recall what medicine though). Whatever it was it didn’t work! The doctor then sent me to get an ultrasound of my bladder and for that you have to hold a lot of water in your bladder to get a good look. I just couldn’t hold all of the water they needed for that amount of time and when I sat down into the doctors chair the nurse was so mad at me for not having a full bladder. I then had a melt down and started crying because I just couldn’t fathom the thought of dealing with this for my whole life. The ultrasound came back with nothing wrong. He then gave me information on I.C., but wouldn’t conclude that I indeed had I.C. and prescribed yet another medicine which didn’t work. What did help a tiny bit was baking soda and water and taking my Zyrtex. He later prescribed Vesicare which worked for awhile, but still never completely taking away that fullness I felt in my urethra. So I went on a new hunt for a new doctor and more information.
After discovering that I might have I.C. I found this website and it really opened my eyes to what is going on with me. Everyone’s stories were helpful and gave me more of a direction in finding what works for me. My urologist was of “no” use to me, so I made an appointment with a new doctor Dr. Sharon L. Boyer. Honestly she is the best thing that has ever entered my life. She specializes in Urogynecology. I had to wait 8 months to see her, but after my first visit I knew she was going to get to the bottom of my issues.
My first appointment with Dr. Boyer was a consultation to go over a very detailed packet she had me fill out. She wanted to know everything!!!! Dr. Boyer made me think that I wasn’t crazy that it would get better. With that feeling of comfort I just blurted out everything I was feeling and going through. We talked for 2 hours. What doctor these days spends 2 hours with one patient and gives you their total attention. I had finally found a doctor that is going to make a miracle. She then sent me home with homework.
The second visit, was the scopes and electro machine testing. I got to see my bladder and the inflamation of I.C. She also discovered that herpes had entered my urethra area and could be the cause of my some of my symptoms. I knew I had herpes, but I never had outbreaks like you see on the internet, so didn’t think I needed to be put on suppressive medicine, such as Valtrex.. I never knew it could spread to my urethra area and/or my bladder. With the virus spreading to my urethra it caused nerve damage resulting in my spasms in the urethra. She says she sees this correlation on a daily basis in patients.
The third visit, we went over the charts from the machines and she indeed agreed that I have I.C and have severe nerve damage. Dr. Boyer gave me a lot of info of things that might be a factor in I.C.. She then wrote prescriptions for Valtrex 500mg, Lyrica 150mg 2x daily, prosed/ds and OTC Aloe Vera capsules, Zyrtex and Prelief. I was to also eat only the foods on the I.C. diet. Fun stuff!!! My major problem foods are CAFFEINE, ARTIFICIAL SWEETENER, ALL DIET DRINKS, TEA, COFFEE, STRAWBERRIES, CITRUS FRUIT, and lastly CHOCOLATE (I have a hard time staying away from the chocolate).
When starting the medicine I was looking for instant results, boy was I disappointed. The Lyrica made me dizzy, reading was blurry, my body felt really hot at night, anxiety and really didn’t seem to improve my voiding issue. My number one problem with Lyrica was the weight gain. I have always work outed about 3 times a week and ran marathons and I have never seen my weight reach the numbers it did. I gained about 10 pound in a week. I was bloated! I didn’t gain much more weight, but it was devastating seeing myself so bloated and the numbers on the scale. Dr. Boyer insisted I keep taking the Lyrica. I was also taking the Prosed, but started to notice after taking it, it would make me start having voiding sensations. Dr. Boyer told me to discontinue the use of prosed and that some people are sensitive to this medicine. After taking the Lyrica and my other medicines listed above for about 3 months I started to see an improvements. My urges were drastically down the feeling of fullness in my urethra was minimal.
As much as I wanted my voiding issue fixed. I also wanted to see what other medicines compared to Lyrica without the weight gain and went to my doctor with idea of trying Topamax after reading about some people using it on this website. She hesitantly wrote me a prescription for Topamax. Topamax was in the same medicine category as Lyrica, so what difference would it make if I switch to the one that made me lose weight not gain. I will tell you why Topamax did not work for me. Within two days of taking Topamax I started having major anxiety attacks. I couldn’t even put make-up on. I was having many of the same issues as Lyrica in the beginning, so I thought no big deal it will pass. Well, after a week on it I was feeling like I was having a UTI, but I wasn’t. My mood had changed drastically! I had no desire to do anything besides sit on the couch. I was so depressed! My boyfriend was noticing a change in my mood. Its like I had flat lined! At the time of taking it I would have told you, you were crazy and that I was fine. Two weeks into taking Topamax I had enough, the Topamax wasn’t helping my voiding and made me feel like I had UTI’s. Dr. Boyer had me stop the medicine right away and two days later I felt like the rain cloud had lifted. I have since gone back on Lyrica and am trying to get back to the feeling I had before I decided to switch to Topamax. Topamax made my brain all foggy and I wouldn’t recommend it!
It has now been a week since going back on Lyrica 150mgs along with the above list. I since added one 600mg calcium and D vitamins. I must say I am starting to feel comfort. Dr. Boyer has set up an appointment for me to get Heparin in two weeks. She has also increased my Lyrica to 200mgs 2x daily. I felt 150mg wasn’t enough for me. By accident I took 2 in the morning one day and to my surprise I felt more control over my issue.
Well, I can only hope that my story can up someone! As did other peoples stories for me. Thanks for everyone that has taken time to write their experience and trials of medications. I have learned a lot and will give as much information as I can from my experience. Thanks!!!!!! :pray: