Go Hokies!
03-14-2009, 07:47 AM
Hi everyone,
I was diagnosed about a month ago with IC. My story…I’m 22 years old and got married this past August, when I was 21. My husband and I started dating September 2006 when I was 19 where we met at college. In March of 2007, we went to visit his brother and sister-in-law, while we were there I started noticing some blood in my urine and it hurt to pee. Mainly I was worried that I was experiencing break-through bleeding, at that time I had been on the pill for almost 2 years to help control my period, which was 10 days long with cramps for a week before it and for the 10 days I was on my period. As soon as we got back to school from the weekend, I made an appointment at the women’s center at the health clinic on campus. They had me give a urine sample and did an exam, I didn’t have break-through bleeding, and was told I had a very severe UTI. They gave me a medication for the UTI and the pain and sent me on my way. Then in June, I woke up at 5am and had to go to the bathroom, I then went every 5 minutes until 8am when there was blood in my urine again. I made the first appointment of the day at the health clinic and saw the same doctor who thought that we hadn’t killed all the bacteria and wanted me to take more meds and go on my way. July I had another UTI, then again in August, I even walked in to a walk-in-clinic and when they asked why I was there I said I have a UTI and that this was my 4th one in 5 months. They gave me a med and sent me home. September of 2007, I thought I was getting another one and went to the women’s clinic again where I met an awesome nurse practitioner who actually listened to everything I had to say. I didn’t have a UTI and she told me that I should go to a urologist. After seeing her again in October and November, where I had symptoms but no UTI she said I needed to go to a urologist so I did. The urologist gave me a medication to take after sex to prevent UTIs and had me to go a physical therapist. The physical therapist was a joke, after 5 visits the most she had told me to do was kegal exercises, which I might add only add to the pain. This summer I went to have my yearly exam at the gyno and told her I was in a lot of pain, that I had close to a dozen UTIs with many symptoms but no UTI, I was having pain all the time and was having pain with intimacy. My husband and I got married and I was in so much pain I couldn’t enjoy our honeymoon. I cried hysterically after the reception while my husband just held me, trying to calm me down. Before the wedding I couldn’t go to a urologist because I was on my parents insurance and they were worried that if something was found I wouldn’t be able to get my own insurance. Luckily for me I now have a job that provides really good insurance and have since been to a urologist. My first visit was in September and when I explained to him what was going on he thought it sounded more like IC then chronic UTIs. He had me get all my medical records and when I went back to him with all of that, he said after reviewing them it seemed I had only had 2 UTIs in the past year and a half. Since that discovery my husband and I have done tons of research and found that people with IC usually suffer from depression, which I am right now, before the IC I was a super happy person, now I just wish the pain would go away. The week before Christmas, I had a cystoscopy done. The result was that my bladder which should be a bubble bum pink color is bright red all over, apparently normally for IC it just has red spots. My doctor put me on Elavid, I’ve been on it for a month and it hasn’t seemed to work. My pain before taking it was on average an 8 on a scale of 1 to 10, after being on the medication my pain seemed to be about a 7.5 to 7.75. I think the worst part of all of this is the “leaking,” as I like to call it, otherwise known as peeing when I don’t mean to. It’s not like I have an urgency to go and I just don’t make it there in time. It’s more an issue that I have no real idea that it’s happening until I feel the moister down there and smell it. My husband is really good about a lot of this, when we are out he reassures me that there is no smell and that it hasn’t gone through my jeans. It’s one of those that I always wear a panty-liner as a just in case because it happens several times a day. When I went to the urologist and he put me on Elavid, he gave me the option of that or Detrol LA, I picked the one for the pain because it’s taking a big toll on me. It feels like no one really understands, my friends just don’t get that I have a problem, and I feel too uncomfortable to tell them about the leaking. Most of my friends have never even had a UTI so it’s not like they even know what to compare the pain to. There is no real thought of doing any kind of intimacy with my husband because that just is too painful. My family doesn’t understand at all, they keep saying I need to drink cranberry juice because that’s good for UTIs even though I don’t have a UTI. My husband is really good and does a lot of research for me, it helps that he was a medic in the army and can understand the stuff the doctor says and translate it for me. I found this website a few weeks ago and have been reading the posts and it’s been helpful because it’s made me cry many times. I think more I just needed a release and it was like finally a place where people know what I’m going through. I do think I’m lucky, I’ve never actually gone on a strict IC diet but I do know what will bother me and what won’t, chocolate and tomato sauce don’t bother me. It’s a good thing chocolate doesn’t bother me because I think I would go crazy without it. I do know if I have one of those two things and a glass of wine or another irritant it will kill me later and it’s something I have to think about before I eat or drink anything. I keep an eye on what I eat so I don’t do more than one irritant in a day or even in a week if I can help it. Mainly, I just want to get better and live a normal life, I’m tired of feeling like I have the bladder of my grandmother. All of this is just exhausting. When I first was doing all the research on IC my husband and I came across something that said people with IC have the quality of life of someone at the end stages of renal failure, and it seems like that’s true. It’s just hard and I apologize if I have vented or said more than people wanted to know about me, I just needed to get all of that off my chest, it’s a lot to hold in.
Thank you for having me as a member!
Go Hokies!
I was diagnosed about a month ago with IC. My story…I’m 22 years old and got married this past August, when I was 21. My husband and I started dating September 2006 when I was 19 where we met at college. In March of 2007, we went to visit his brother and sister-in-law, while we were there I started noticing some blood in my urine and it hurt to pee. Mainly I was worried that I was experiencing break-through bleeding, at that time I had been on the pill for almost 2 years to help control my period, which was 10 days long with cramps for a week before it and for the 10 days I was on my period. As soon as we got back to school from the weekend, I made an appointment at the women’s center at the health clinic on campus. They had me give a urine sample and did an exam, I didn’t have break-through bleeding, and was told I had a very severe UTI. They gave me a medication for the UTI and the pain and sent me on my way. Then in June, I woke up at 5am and had to go to the bathroom, I then went every 5 minutes until 8am when there was blood in my urine again. I made the first appointment of the day at the health clinic and saw the same doctor who thought that we hadn’t killed all the bacteria and wanted me to take more meds and go on my way. July I had another UTI, then again in August, I even walked in to a walk-in-clinic and when they asked why I was there I said I have a UTI and that this was my 4th one in 5 months. They gave me a med and sent me home. September of 2007, I thought I was getting another one and went to the women’s clinic again where I met an awesome nurse practitioner who actually listened to everything I had to say. I didn’t have a UTI and she told me that I should go to a urologist. After seeing her again in October and November, where I had symptoms but no UTI she said I needed to go to a urologist so I did. The urologist gave me a medication to take after sex to prevent UTIs and had me to go a physical therapist. The physical therapist was a joke, after 5 visits the most she had told me to do was kegal exercises, which I might add only add to the pain. This summer I went to have my yearly exam at the gyno and told her I was in a lot of pain, that I had close to a dozen UTIs with many symptoms but no UTI, I was having pain all the time and was having pain with intimacy. My husband and I got married and I was in so much pain I couldn’t enjoy our honeymoon. I cried hysterically after the reception while my husband just held me, trying to calm me down. Before the wedding I couldn’t go to a urologist because I was on my parents insurance and they were worried that if something was found I wouldn’t be able to get my own insurance. Luckily for me I now have a job that provides really good insurance and have since been to a urologist. My first visit was in September and when I explained to him what was going on he thought it sounded more like IC then chronic UTIs. He had me get all my medical records and when I went back to him with all of that, he said after reviewing them it seemed I had only had 2 UTIs in the past year and a half. Since that discovery my husband and I have done tons of research and found that people with IC usually suffer from depression, which I am right now, before the IC I was a super happy person, now I just wish the pain would go away. The week before Christmas, I had a cystoscopy done. The result was that my bladder which should be a bubble bum pink color is bright red all over, apparently normally for IC it just has red spots. My doctor put me on Elavid, I’ve been on it for a month and it hasn’t seemed to work. My pain before taking it was on average an 8 on a scale of 1 to 10, after being on the medication my pain seemed to be about a 7.5 to 7.75. I think the worst part of all of this is the “leaking,” as I like to call it, otherwise known as peeing when I don’t mean to. It’s not like I have an urgency to go and I just don’t make it there in time. It’s more an issue that I have no real idea that it’s happening until I feel the moister down there and smell it. My husband is really good about a lot of this, when we are out he reassures me that there is no smell and that it hasn’t gone through my jeans. It’s one of those that I always wear a panty-liner as a just in case because it happens several times a day. When I went to the urologist and he put me on Elavid, he gave me the option of that or Detrol LA, I picked the one for the pain because it’s taking a big toll on me. It feels like no one really understands, my friends just don’t get that I have a problem, and I feel too uncomfortable to tell them about the leaking. Most of my friends have never even had a UTI so it’s not like they even know what to compare the pain to. There is no real thought of doing any kind of intimacy with my husband because that just is too painful. My family doesn’t understand at all, they keep saying I need to drink cranberry juice because that’s good for UTIs even though I don’t have a UTI. My husband is really good and does a lot of research for me, it helps that he was a medic in the army and can understand the stuff the doctor says and translate it for me. I found this website a few weeks ago and have been reading the posts and it’s been helpful because it’s made me cry many times. I think more I just needed a release and it was like finally a place where people know what I’m going through. I do think I’m lucky, I’ve never actually gone on a strict IC diet but I do know what will bother me and what won’t, chocolate and tomato sauce don’t bother me. It’s a good thing chocolate doesn’t bother me because I think I would go crazy without it. I do know if I have one of those two things and a glass of wine or another irritant it will kill me later and it’s something I have to think about before I eat or drink anything. I keep an eye on what I eat so I don’t do more than one irritant in a day or even in a week if I can help it. Mainly, I just want to get better and live a normal life, I’m tired of feeling like I have the bladder of my grandmother. All of this is just exhausting. When I first was doing all the research on IC my husband and I came across something that said people with IC have the quality of life of someone at the end stages of renal failure, and it seems like that’s true. It’s just hard and I apologize if I have vented or said more than people wanted to know about me, I just needed to get all of that off my chest, it’s a lot to hold in.
Thank you for having me as a member!
Go Hokies!