I posted here earlier this year and got some great support. Thanks to everyone. I am back on this site because I am having the worst flare yet. I started feeling pain back in the middle of August and just kind of ignored it thinking okay here we go again. Started to watch my diet more closely again and started taking pain killers. After about two weeks I was having some pretty severe pain and pressure in my pelvic area(never had that before). As well as the usuall burning pain in my bladder and the shooting pains down my leg and my right foot always seems to hurt. The burning and pain got increasingly worse so finally went to the doc. I had a bladder infection, bad one too it, it was affecting my kidneys as well. I have had IC for almost ten years now and this is only the 4th infection. So I suffered through another two weeks hoping the antibiotics would work. No such luck. The infection has cleared up but there is still blood in my urine and no change in my symptoms. I went to doing weekly uracyst installs again and here I am 3 weeks after starting them weekly and still no change.
I have been suffering now for almost 7 weeks with nothing working. I have lost my 4th job in the last 7 years last week because of this condition and my mental state is at the breaking point. I have gone to the emerg a couple times, waited for hours in excruciating pain to be told sorry there is nothing we can do for you because "you have a syndrome, not an actuall ailment we can treat". What is that supposed to mean? I'm not actually in pain because the doc doesn't understand the disease? I feel like a hypochondriac on a good day, this did nothing for my physical or mental well being.
I have a great family doc and she does as much as she can for me but it takes weeks to get into my uro ( I live in Canada ). So I have to suffer until then. Then when I finally get to him I don't know what or how long until something will happen. Last year I was told if the symptoms got any worse or more consistent that the next step was bladder removal. That is not an avenue I even want to think about right now.
This are the symptoms I've had over the past ten years:
-Frequent urination- sometimes up to 25 times during the day and5-6 times during the night
-Burning in lower right abdomen that radiates down inside of leg
-The bottom of my feet sometimes feel like there are little electric currents going through them
- bladder spasms that feel like my ureatha is being pulled inside my bladder
- incontinence - there have been many I times I just stand up and boom I have to pee right then no warning nothing. ( not so much fun in public)
- nausea- i mean severe nausea- especially in the morning
- now I have severe lower back ache and shooting pain
- and this new pain and pressure in my pelvic region
I read some where about so of you having painful arousal for no reason, I think that must be what is starting now. I can even wear under wear or jeans anymore because of the pain and pressure in my pelvic area and some weird arousal thing happening.
Treatments I have tried
- elmiron - 6 months- liver did not like it
- DMSO installs weekly then monthly- had allergic reaction after 3
- Lyrica- seems to help when things are out of control
- reactine and allergy shots- I have severe allergies to lots of things and when they are bad the IC gets worse. Just staring the shots
- painkillers from tylenol to demerol
- I have had 3 hydrodistentions and cystoscopies
- acupuncture - nothing dramatic for results but man was it relaxing
So now I have talked your ear off you know my story. If you have any suggestions on what I can do to get through the next few weeks to help so I don't have to even think about having my bladder removed it would be greatly appreciated.
Thanks for your care and understanding
Jacquie
I have been suffering now for almost 7 weeks with nothing working. I have lost my 4th job in the last 7 years last week because of this condition and my mental state is at the breaking point. I have gone to the emerg a couple times, waited for hours in excruciating pain to be told sorry there is nothing we can do for you because "you have a syndrome, not an actuall ailment we can treat". What is that supposed to mean? I'm not actually in pain because the doc doesn't understand the disease? I feel like a hypochondriac on a good day, this did nothing for my physical or mental well being.
I have a great family doc and she does as much as she can for me but it takes weeks to get into my uro ( I live in Canada ). So I have to suffer until then. Then when I finally get to him I don't know what or how long until something will happen. Last year I was told if the symptoms got any worse or more consistent that the next step was bladder removal. That is not an avenue I even want to think about right now.
This are the symptoms I've had over the past ten years:
-Frequent urination- sometimes up to 25 times during the day and5-6 times during the night
-Burning in lower right abdomen that radiates down inside of leg
-The bottom of my feet sometimes feel like there are little electric currents going through them
- bladder spasms that feel like my ureatha is being pulled inside my bladder
- incontinence - there have been many I times I just stand up and boom I have to pee right then no warning nothing. ( not so much fun in public)
- nausea- i mean severe nausea- especially in the morning
- now I have severe lower back ache and shooting pain
- and this new pain and pressure in my pelvic region
I read some where about so of you having painful arousal for no reason, I think that must be what is starting now. I can even wear under wear or jeans anymore because of the pain and pressure in my pelvic area and some weird arousal thing happening.
Treatments I have tried
- elmiron - 6 months- liver did not like it
- DMSO installs weekly then monthly- had allergic reaction after 3
- Lyrica- seems to help when things are out of control
- reactine and allergy shots- I have severe allergies to lots of things and when they are bad the IC gets worse. Just staring the shots
- painkillers from tylenol to demerol
- I have had 3 hydrodistentions and cystoscopies
- acupuncture - nothing dramatic for results but man was it relaxing
So now I have talked your ear off you know my story. If you have any suggestions on what I can do to get through the next few weeks to help so I don't have to even think about having my bladder removed it would be greatly appreciated.
Thanks for your care and understanding
Jacquie
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