Hi,
My name is Mary and I am from Connecticut. In found this site by googling IC. I believe my IC started after I had my first child in 1982. I started feeling urgency, frequency and painful urination. I went to my doctor and he said I had a urinary tract infection. He gave me antibiotics and the med that is supposed to help the burning symptom.It made your urine turn blue. I found that instead of making me better these meds made me worse. So went back to the doctor and I gave him another urine sample and this time it said negative. So now total confusion so then we started sending them out to a Lab.Each time we sent them out they came back saying positive and then the next one negative yet i was still feeling lots of discomfort. We tried lots antibiotics and all increased my symptoms. So he told me to drink lots of water and try to flush out my bladder. This did NOT HELP. So he sent me to a urologist at the hospital in the city. He checked my urine sample and said no urinary tract infection. He asked lots of questions but not once mentioned IC to me. He said he would do a hydro under sedation and also would widen my urethra. AFter the this was done he told me my bladder looked ok and that i could hold 21 ounces of urine with no problem.He told me to go home and warned me that i would be uncomfortable for a few days and also told me to call back if things did not improve in a few weeks . Well the procedure seemed to fix the problem. All symptoms vanished for many years. After my second child was born I started to have more frequency. But just figured it was from having children. So just did not focus to much on it.Life was busy with two kids and two dogs. I mentioned this to my obgyn during a visit and she asked me a few questions. Like did I notice it after eating or drinking things. When I thought about it I said yeah I notice when I eat Italian food or drink soda, tea and coffee. She then gave me some paperwork on IC and said it seems this might be my problem since my urine sample showed no infection. Well I started to cut back on things and realized it was food related. But I just let it go because there was just frequency, no pain or urgency. THen about two years ago I suddenly had frequency,urgency,severe pelvic pain . I had a feeling like I had a basketball in my Nagina and rectom.Horrible pressure. STill afraid to go to dr. I HATE GOING TO DOCTORS. .ut then I had this huge bulge coming out of my vagina. IT came out and went back in.My friend called it the alien when i told her about it.So now i am scared thinking my bladder is falling OUT. Went to urologist and she said she saw absolutely nothing wrong in there. But set me up for ultra sounds and blood work in order to diagnose IC. I asked her for something to help my bladder..ie oab med or anything that might help with urgency, frequency and pain and she said No I am not giving you anything. SHe said you lived this long with this whats another 2 weeks. WITCH with a letter B instead...I also went to gyno for complete exam and also for vaginal ultrasound and she also found nothing. I said WHAT? This lump that comes out was the size of a babys head during labor. Yet no one had an answer..she said perhaps it is hemms or rectal wall etc........went back to uro and was put on Elmiron, toviaz . These meds made my IBS rage out of control and also made me feel sick..headaches,,dizzyness woozy head feeling,nausea and constipation. She got mad an said none of her patients had any of these side effects so without asking me or warning me she just said I AM GIVING you a bladder instillation right now since you cant take meds. I just froze and next thing I knew it was done and she gave me pyrdium. ANd gave me a prescription for DMSO and said that we will try this and see what happens. I did 10 Installation treatments and NO benefit what so ever.Then she is getting mad all over again saying you dont have IC then since what i am doing is not helping. She said perhaps it is food allergies. i said really??? I am allergic to coffee, tea,soda, tomatoes, grapes, watermelon, lemons , peppers, spices, etc and she then shut up and said nothing. During treatments I said it wasnt helping at all an was there something she can give me to keep me confortable while we wait for installations to kick in and she said NO. SDo I had one more treatment and then went home . After going to bathroom I took a HOT SHOWER and while in the shower I had bad stomach cramps , nausea then i started feeling dizzy, my heart started racing and my hands and legs went numb and then i saw blackness and fainted in the showere. THIS HAS NEVER HAPPENED TO ME EVER. I knew it was the treatment and yet when i told her she said no way this was not the dmso and i said yes it was i had googled it and found two patients who had similar symptoms that somehow the dmso got into my system. We argued about it and I told her she was not helping me and she made me beg med treatments. So she said well i have done all i can for you and there is nothing left for me to do for you..in other words she didnt want to treat me because she couldnt figure out what to do with me. I guess I was a complication in her eyes. So , I said there are lots of things you had not tried like atarax, elavil etc..so again she went silent .I guess she was getting really annoyed because i always pointed out things that she had not thought of herself. So she said ok Mary what do you want i said the elavil and atarax and she said PICK ONE MARY. I remembered reading Jills story and said i want atarax as Jill said this was the one med that helped her the most. IT WAS MY MIRACLE PILL. I slept thru the night for the first time the night i Took that first pill. She suddenly left the practice . She bragged how she had been doing this for 12 years and never had any problems with patients prior to ME...then why did she leave and go into dermatology? The pharmacist said that field is a NO BRAINER..lol..anyways, i am struggling to figure this all out.......currently taking elmiron, atarax, elavil, vesicare and uribel. Patiently dealing with horrible side effects and worsening IBS. To afraid to complain to new urologist because I think she made me out to be a problem patient . I can tell she gave him an earful about me. She lacked compassion.......the first visit she made me cry by telling me i will neverget well and will have this forever and will never eat the foods I used to eat. anyways i wrote a book here and havent even told all of my story. This site was lifesaving to me..it gave me hope and determination to get well again..everything i learned was from this site not from the doctors..Donna you are amazing with all the help you give new ic patients.........you should be an IC doctor..you have the patience , calmness ,knowledge and compassion most drs lack. Mary
My name is Mary and I am from Connecticut. In found this site by googling IC. I believe my IC started after I had my first child in 1982. I started feeling urgency, frequency and painful urination. I went to my doctor and he said I had a urinary tract infection. He gave me antibiotics and the med that is supposed to help the burning symptom.It made your urine turn blue. I found that instead of making me better these meds made me worse. So went back to the doctor and I gave him another urine sample and this time it said negative. So now total confusion so then we started sending them out to a Lab.Each time we sent them out they came back saying positive and then the next one negative yet i was still feeling lots of discomfort. We tried lots antibiotics and all increased my symptoms. So he told me to drink lots of water and try to flush out my bladder. This did NOT HELP. So he sent me to a urologist at the hospital in the city. He checked my urine sample and said no urinary tract infection. He asked lots of questions but not once mentioned IC to me. He said he would do a hydro under sedation and also would widen my urethra. AFter the this was done he told me my bladder looked ok and that i could hold 21 ounces of urine with no problem.He told me to go home and warned me that i would be uncomfortable for a few days and also told me to call back if things did not improve in a few weeks . Well the procedure seemed to fix the problem. All symptoms vanished for many years. After my second child was born I started to have more frequency. But just figured it was from having children. So just did not focus to much on it.Life was busy with two kids and two dogs. I mentioned this to my obgyn during a visit and she asked me a few questions. Like did I notice it after eating or drinking things. When I thought about it I said yeah I notice when I eat Italian food or drink soda, tea and coffee. She then gave me some paperwork on IC and said it seems this might be my problem since my urine sample showed no infection. Well I started to cut back on things and realized it was food related. But I just let it go because there was just frequency, no pain or urgency. THen about two years ago I suddenly had frequency,urgency,severe pelvic pain . I had a feeling like I had a basketball in my Nagina and rectom.Horrible pressure. STill afraid to go to dr. I HATE GOING TO DOCTORS. .ut then I had this huge bulge coming out of my vagina. IT came out and went back in.My friend called it the alien when i told her about it.So now i am scared thinking my bladder is falling OUT. Went to urologist and she said she saw absolutely nothing wrong in there. But set me up for ultra sounds and blood work in order to diagnose IC. I asked her for something to help my bladder..ie oab med or anything that might help with urgency, frequency and pain and she said No I am not giving you anything. SHe said you lived this long with this whats another 2 weeks. WITCH with a letter B instead...I also went to gyno for complete exam and also for vaginal ultrasound and she also found nothing. I said WHAT? This lump that comes out was the size of a babys head during labor. Yet no one had an answer..she said perhaps it is hemms or rectal wall etc........went back to uro and was put on Elmiron, toviaz . These meds made my IBS rage out of control and also made me feel sick..headaches,,dizzyness woozy head feeling,nausea and constipation. She got mad an said none of her patients had any of these side effects so without asking me or warning me she just said I AM GIVING you a bladder instillation right now since you cant take meds. I just froze and next thing I knew it was done and she gave me pyrdium. ANd gave me a prescription for DMSO and said that we will try this and see what happens. I did 10 Installation treatments and NO benefit what so ever.Then she is getting mad all over again saying you dont have IC then since what i am doing is not helping. She said perhaps it is food allergies. i said really??? I am allergic to coffee, tea,soda, tomatoes, grapes, watermelon, lemons , peppers, spices, etc and she then shut up and said nothing. During treatments I said it wasnt helping at all an was there something she can give me to keep me confortable while we wait for installations to kick in and she said NO. SDo I had one more treatment and then went home . After going to bathroom I took a HOT SHOWER and while in the shower I had bad stomach cramps , nausea then i started feeling dizzy, my heart started racing and my hands and legs went numb and then i saw blackness and fainted in the showere. THIS HAS NEVER HAPPENED TO ME EVER. I knew it was the treatment and yet when i told her she said no way this was not the dmso and i said yes it was i had googled it and found two patients who had similar symptoms that somehow the dmso got into my system. We argued about it and I told her she was not helping me and she made me beg med treatments. So she said well i have done all i can for you and there is nothing left for me to do for you..in other words she didnt want to treat me because she couldnt figure out what to do with me. I guess I was a complication in her eyes. So , I said there are lots of things you had not tried like atarax, elavil etc..so again she went silent .I guess she was getting really annoyed because i always pointed out things that she had not thought of herself. So she said ok Mary what do you want i said the elavil and atarax and she said PICK ONE MARY. I remembered reading Jills story and said i want atarax as Jill said this was the one med that helped her the most. IT WAS MY MIRACLE PILL. I slept thru the night for the first time the night i Took that first pill. She suddenly left the practice . She bragged how she had been doing this for 12 years and never had any problems with patients prior to ME...then why did she leave and go into dermatology? The pharmacist said that field is a NO BRAINER..lol..anyways, i am struggling to figure this all out.......currently taking elmiron, atarax, elavil, vesicare and uribel. Patiently dealing with horrible side effects and worsening IBS. To afraid to complain to new urologist because I think she made me out to be a problem patient . I can tell she gave him an earful about me. She lacked compassion.......the first visit she made me cry by telling me i will neverget well and will have this forever and will never eat the foods I used to eat. anyways i wrote a book here and havent even told all of my story. This site was lifesaving to me..it gave me hope and determination to get well again..everything i learned was from this site not from the doctors..Donna you are amazing with all the help you give new ic patients.........you should be an IC doctor..you have the patience , calmness ,knowledge and compassion most drs lack. Mary
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