DaniOwl
12-03-2007, 05:51 AM
Hi everyone, I am a 35 year old woman living in Milwaukee, WI. Here’s my IC story…
I was diagnosed with IC in October 2007. I had a cystoscopy with distention performed by a urogynecologist in mid-October, and also a laparoscopy performed at the same time by a gynecologist. The cysto confirmed IC, and the laparoscopy confirmed mild endometriosis. I was prescribed Elmiron twice per day by my gynecologist and took it for 6 weeks before learning it was the wrong dose. My urogynecologist wrote me a new prescription for three times per day (2 in the morning, 1 in the evening). I was also told my bladder is 70% normal size. The pathology from my bladder wash came back abnormal and a bladder biopsy was performed by a urologist at the beginning of November. Thankfully the results came back benign. However, the first cystoscopy with distention left me in a massive amount of pain that was only just subsiding when I had the biopsy performed. Since the biopsy I have been experiencing renewed bladder pain and discomfort along with some new symptoms – urethral spasms & blood in urine (light pink on paper). I think the bladder pressure might be starting to subside a bit (it’s up and down though), the urethral problems are continuing. I’m hoping I am just still recovering from that biopsy which seems to have really done a number on my urethra and bladder. Prior to the first October surgeries, my symptoms had been mild bladder pressure for a number of months with occasionally times of increased pressure and occasional flares, so these “set-backs” have been frustrating and causing me to question whether the procedures were worth it. They say hindsight is 20/20, but whoever said that didn’t have IC, because I’m still not sure of anything.
My IC story began in August 2006 (although probably a lot earlier, if I really think about symptoms and signs) when I felt bladder pressure gradually increasing. I did not have a regular doctor at the time since I “fired” my GP earlier in the year due to matters probably unrelated. I went to a “Quick Care” clinic thinking I had a UTI and needed antibiotics. They tested my urine and said there was a small amount of blood (not visible), probably due to a UTI and prescribed a mild antibiotic. After 3 days on the antibiotic the pain continued to grow worse. I called the clinic back and was prescribed a stronger antibiotic. A few days later, in excruciating pain, I drove myself to the emergency room. A CT scan, urinalysis and blood work were performed. They told me the CT and blood work were normal. The urinalysis however, showed “a lot” of blood (again, I couldn’t see any) and calcium crystals, no bacteria. Due to those two facts they diagnosed me with kidney stones and sent me home with a Vicadin prescription and told me to stay on the antibiotics just in case. The pain was intermittent, but continued to be unbelievably painful when it presented. The bladder pressure never stopped. A few days later, again in excruciating pain, I made a second trip to the emergency room. I felt that it was somehow related to my menstrual cycle because my period started just after I had been to the ER the first time. They did a pelvic ultrasound and exam and told me they didn’t find anything. Their conclusion was still kidney stones. I didn’t buy their diagnosis, I had no kidney pain, it was all bladder pressure and pain on my left hip. The evening after I had the pelvic ultrasound I had the most intense pain yet. I called my mom and got in to see a family doctor in my hometown, he diagnosed me with shingles and put me on Imetrex. I had absolutely no blisters. However, he made this diagnosis solely on the pain. I asked him if shingles would explain the bladder pressure. He said no. I was at a loss…. This diagnosis made even less sense and had no basis. However, I modified my diet to bland (potatoes, rice, water) which seemed to make an difference and gradually the pain began to subside. But, I wasn’t really sure if it was the diet or the Imetrex. Either way, I was glad to be feeling better. I then began a search for a general physician. I think I went to about 3 or 4 before I found one who I felt listened to me and took my symptoms seriously. To make a long story shorter, it turns out the ER didn’t tell me they found major cysts on each of my ovaries. I didn’t learn this until my ER results were forwarded to my new general physician who questioned why I didn’t disclose the cysts to her. She referred me to a gynecologist who after additional pelvic ultrasounds felt that my pain in August and September of 2006 was due to ruptured cysts. I asked her about the bladder pain I had experienced at that time and she said she didn’t know. The bladder pain had since subsided and everything seemed to be getting back to normal, and so I didn’t push the issue. I was eating pretty much whatever I wanted to, but steering clear of peppers and hot spices which I knew I had an intolerance or allergy to anyway (I learned this 10 years prior in college when my mouth broke out in blisters after eating jalepenos). In May of 2007, the bladder pressure returned, I went back to my gynecologist thinking maybe I had another ovarian cyst developing. Upon doing an exam, it was determined that it was not my ovaries that were in pain, but my bladder. This is the first time I ever heard of interstitial cystitis. My gynecologist suspected it and referred me to a urogynecologist. It took a couple of months to get in to see her. In the interim, it dawned on me that 2 days before my bladder began to hurt, I had eaten some chips that I did not know contained paprika and cayenne pepper. Eating these chips caused my mouth to break out in red sores. I just happened to take a digital photo since I wanted to show my regular physician the next time I saw her and get her opinion on them. It just took some time for me to make the bladder/mouth connection. D’oh! By the time I had the appointment with the urogynecologist, I was actually feeling back to my usual “baseline” of minor bladder pressure. I showed her the pictures of my mouth (it’s weird to me how the photo does look similar to some of the IC bladder photos – I would be happy to post if anyone is interested) and wondered if the bladder symptoms weren’t also a reaction to the food. I wanted an easy answer – don’t eat peppers – not to be diagnosed with a chronic, incurable disease. She told me she thought it was a possibility, (most likely humoring me). However, she thought that since my gynecologist was recommending a laparoscopy anyway because of suspicion of endometriosis, that it would be a good idea to do a cystoscopy with distention at the same time. So, that’s the diagnostic story. Treatment has just begun. I’ve ordered a few books from Amazon, stumbled across the IC Network and am trying to educate myself as much as possible.
Besides being on Elmiron, taking Clonazepam (already on it daily for anxiety/panic attacks) – but it also helps the bladder pain a bit, my urogyne recommended physical therapy – myofascial release & neuromuscular re-education. Not sure what to expect here, but I’ll be researching it on the IC Network. There were no openings until the beginning of January so I have some time. I also happened to take Tagamet for stomach issues the other day and it relieved my bladder pressure somewhat significantly. I’ll need to research that too. Coincidence? I also mentioned to my urogyne that I had read about NAET allergy therapy and wondered if that would be a good idea, she thought it would be. Insurance doesn’t cover it though, so more research is need there as well.
I’ve felt like IC is a lonely disease as no one understands what it’s like unless they too have it. I also feel like the doctors don’t know much about this condition, everything is trial and error, and as a patient, one almost has to become their own “doctor.” I also have to admit, I am scared to try new things to help the condition, because of the fear that it may worsen the symptoms. Anyone else feel this way? Luckily I have a supportive family who tries to understand and allows me to vent to them as needed - a long-term partner (12+ years), 3 kitties :cat:, wonderful parents and sisters and friends. Work is difficult - grinning & bearing the condition through the day. They have at least been flexible with doctor appointments, but I’ve found our insurance plan leaves much to be desired for someone with a chronic condition.
Anyway, thank you for reading my lengthy story. I hope to become active on these boards. I am a good listener too. I hope I can offer support and encouragement, and also find the same. I know a lot of people have IC to varying degrees and I hope a cure is found soon. The IC Network has been a tremendous source of hope.:grouphug:
I was diagnosed with IC in October 2007. I had a cystoscopy with distention performed by a urogynecologist in mid-October, and also a laparoscopy performed at the same time by a gynecologist. The cysto confirmed IC, and the laparoscopy confirmed mild endometriosis. I was prescribed Elmiron twice per day by my gynecologist and took it for 6 weeks before learning it was the wrong dose. My urogynecologist wrote me a new prescription for three times per day (2 in the morning, 1 in the evening). I was also told my bladder is 70% normal size. The pathology from my bladder wash came back abnormal and a bladder biopsy was performed by a urologist at the beginning of November. Thankfully the results came back benign. However, the first cystoscopy with distention left me in a massive amount of pain that was only just subsiding when I had the biopsy performed. Since the biopsy I have been experiencing renewed bladder pain and discomfort along with some new symptoms – urethral spasms & blood in urine (light pink on paper). I think the bladder pressure might be starting to subside a bit (it’s up and down though), the urethral problems are continuing. I’m hoping I am just still recovering from that biopsy which seems to have really done a number on my urethra and bladder. Prior to the first October surgeries, my symptoms had been mild bladder pressure for a number of months with occasionally times of increased pressure and occasional flares, so these “set-backs” have been frustrating and causing me to question whether the procedures were worth it. They say hindsight is 20/20, but whoever said that didn’t have IC, because I’m still not sure of anything.
My IC story began in August 2006 (although probably a lot earlier, if I really think about symptoms and signs) when I felt bladder pressure gradually increasing. I did not have a regular doctor at the time since I “fired” my GP earlier in the year due to matters probably unrelated. I went to a “Quick Care” clinic thinking I had a UTI and needed antibiotics. They tested my urine and said there was a small amount of blood (not visible), probably due to a UTI and prescribed a mild antibiotic. After 3 days on the antibiotic the pain continued to grow worse. I called the clinic back and was prescribed a stronger antibiotic. A few days later, in excruciating pain, I drove myself to the emergency room. A CT scan, urinalysis and blood work were performed. They told me the CT and blood work were normal. The urinalysis however, showed “a lot” of blood (again, I couldn’t see any) and calcium crystals, no bacteria. Due to those two facts they diagnosed me with kidney stones and sent me home with a Vicadin prescription and told me to stay on the antibiotics just in case. The pain was intermittent, but continued to be unbelievably painful when it presented. The bladder pressure never stopped. A few days later, again in excruciating pain, I made a second trip to the emergency room. I felt that it was somehow related to my menstrual cycle because my period started just after I had been to the ER the first time. They did a pelvic ultrasound and exam and told me they didn’t find anything. Their conclusion was still kidney stones. I didn’t buy their diagnosis, I had no kidney pain, it was all bladder pressure and pain on my left hip. The evening after I had the pelvic ultrasound I had the most intense pain yet. I called my mom and got in to see a family doctor in my hometown, he diagnosed me with shingles and put me on Imetrex. I had absolutely no blisters. However, he made this diagnosis solely on the pain. I asked him if shingles would explain the bladder pressure. He said no. I was at a loss…. This diagnosis made even less sense and had no basis. However, I modified my diet to bland (potatoes, rice, water) which seemed to make an difference and gradually the pain began to subside. But, I wasn’t really sure if it was the diet or the Imetrex. Either way, I was glad to be feeling better. I then began a search for a general physician. I think I went to about 3 or 4 before I found one who I felt listened to me and took my symptoms seriously. To make a long story shorter, it turns out the ER didn’t tell me they found major cysts on each of my ovaries. I didn’t learn this until my ER results were forwarded to my new general physician who questioned why I didn’t disclose the cysts to her. She referred me to a gynecologist who after additional pelvic ultrasounds felt that my pain in August and September of 2006 was due to ruptured cysts. I asked her about the bladder pain I had experienced at that time and she said she didn’t know. The bladder pain had since subsided and everything seemed to be getting back to normal, and so I didn’t push the issue. I was eating pretty much whatever I wanted to, but steering clear of peppers and hot spices which I knew I had an intolerance or allergy to anyway (I learned this 10 years prior in college when my mouth broke out in blisters after eating jalepenos). In May of 2007, the bladder pressure returned, I went back to my gynecologist thinking maybe I had another ovarian cyst developing. Upon doing an exam, it was determined that it was not my ovaries that were in pain, but my bladder. This is the first time I ever heard of interstitial cystitis. My gynecologist suspected it and referred me to a urogynecologist. It took a couple of months to get in to see her. In the interim, it dawned on me that 2 days before my bladder began to hurt, I had eaten some chips that I did not know contained paprika and cayenne pepper. Eating these chips caused my mouth to break out in red sores. I just happened to take a digital photo since I wanted to show my regular physician the next time I saw her and get her opinion on them. It just took some time for me to make the bladder/mouth connection. D’oh! By the time I had the appointment with the urogynecologist, I was actually feeling back to my usual “baseline” of minor bladder pressure. I showed her the pictures of my mouth (it’s weird to me how the photo does look similar to some of the IC bladder photos – I would be happy to post if anyone is interested) and wondered if the bladder symptoms weren’t also a reaction to the food. I wanted an easy answer – don’t eat peppers – not to be diagnosed with a chronic, incurable disease. She told me she thought it was a possibility, (most likely humoring me). However, she thought that since my gynecologist was recommending a laparoscopy anyway because of suspicion of endometriosis, that it would be a good idea to do a cystoscopy with distention at the same time. So, that’s the diagnostic story. Treatment has just begun. I’ve ordered a few books from Amazon, stumbled across the IC Network and am trying to educate myself as much as possible.
Besides being on Elmiron, taking Clonazepam (already on it daily for anxiety/panic attacks) – but it also helps the bladder pain a bit, my urogyne recommended physical therapy – myofascial release & neuromuscular re-education. Not sure what to expect here, but I’ll be researching it on the IC Network. There were no openings until the beginning of January so I have some time. I also happened to take Tagamet for stomach issues the other day and it relieved my bladder pressure somewhat significantly. I’ll need to research that too. Coincidence? I also mentioned to my urogyne that I had read about NAET allergy therapy and wondered if that would be a good idea, she thought it would be. Insurance doesn’t cover it though, so more research is need there as well.
I’ve felt like IC is a lonely disease as no one understands what it’s like unless they too have it. I also feel like the doctors don’t know much about this condition, everything is trial and error, and as a patient, one almost has to become their own “doctor.” I also have to admit, I am scared to try new things to help the condition, because of the fear that it may worsen the symptoms. Anyone else feel this way? Luckily I have a supportive family who tries to understand and allows me to vent to them as needed - a long-term partner (12+ years), 3 kitties :cat:, wonderful parents and sisters and friends. Work is difficult - grinning & bearing the condition through the day. They have at least been flexible with doctor appointments, but I’ve found our insurance plan leaves much to be desired for someone with a chronic condition.
Anyway, thank you for reading my lengthy story. I hope to become active on these boards. I am a good listener too. I hope I can offer support and encouragement, and also find the same. I know a lot of people have IC to varying degrees and I hope a cure is found soon. The IC Network has been a tremendous source of hope.:grouphug: