Is there anyone here suffering from Interstitial Cystitis, or Irritable Bladder Syndrome? I am newly diagnosed (February 2012) and I have been told it's Lupus by my Rheumy, and because of the symptoms, I believe it's SLE. I am on Plaqueni 200mg. I have a lot of aches and pains, and I find that I always have problems with my bladder. I can never feel that normal urge to go, I just feel pain, and that lets me know my bladder is full. Every time I see the doctors they say I don't have a UTI or any infections and sort of brush me off. I have read that many women with Lupus suffer from Irritable Bladder Syndrome, and I wonder if any one else out there is going through it, because it is making me feel so achy and paranoid...What do you do to alleviate it? What did it take to get a diagnosis? Help please, and thank you!
Yes. You need to see a urologist there is medaction for it. I had to take for about two year but it work than they wein off it. You make need to go back every once inwild.
Hello RisaRae,
I've not had these symptoms sorry, instead my bladder was to small for the amount of urine i had to pass so they operated on me this year and stretched it and i was always going constantley.
Their will be member's who have had simular or same symptoms who will answer in due course.
((Hugs & kisses)) Terri xxx
Thanks for the advice. I will begin my search for one. Do you find tht things you drink bother you? If I drink anything else but water, I have a harder time urinating...The little trickles of urine in the toliet are so annoying for me! It's worse at night...
firelady said:
Yes. You need to see a urologist there is medaction for it. I had to take for about two year but it work than they wein off it. You make need to go back every once inwild.
Hi Risa,
Did you read the link i added about the kidneys because the kidneys have such a large envolvement with our bodies plus it tells of certain issues that maybe causing your problem.
Well although the operated on me it's made no difference what so ever....i can't drink fizzy drinks they put pressure on me more and i think suffering with IBS is'nt helping one bit besides.
I think the problem you have is linked with your kidneys and i'd go and see someone because regarding Lupus the issues your having can't be took lightly because of your organs and urinating properly is important to we.
RisaRae said:
Thanks for the advice. I will begin my search for one. Do you find tht things you drink bother you? If I drink anything else but water, I have a harder time urinating...The little trickles of urine in the toliet are so annoying for me! It's worse at night...
firelady said:Yes. You need to see a urologist there is medaction for it. I had to take for about two year but it work than they wein off it. You make need to go back every once inwild.
Thanks Tez 20 and Ann A for your feedback. I did read that article, it is very helpful. I am going to have my doctor look at my kidneys. I had a kidney sonogram in the beginning of the year, but it came back fine. I will definitely have them look at my urine in more detail. I know the doctors will look at me like I am crazy, but I need to know what is going on, because it's annoying.
As for the "land of the sweet tea", I live in the land of the soda! In New York City, Mayor Bloomberg is trying to limit the soda intake by making restaurants sell smaller portions. I happen to be a soda addict, and I think that is the culprit. But I also read that antibiotics can set it off too. My doctor treated me for a urinary tract infection with antibiotics, and I wasn't the same after, even though the infection went away. Here is the link to that article in case anyone else happens to read this and is looking for an answer like myself. I will keep you posted if I ever get a resolution! http://www.sclero.org/medical/symptoms/associated/interstitial-cystitis/a-to-z.html
Hi Risa,
I would persist on being checked again because you need to get this sorted and thank you for adding the link and where it says on the diagnosis part half way down - (pinpoint bleeding) of the lining of the bladder.
Well for nearly 2yrs in between my monthly's i was haemorraghing badly and because i have anaemia they'd got to stop it but they could'nt find the course...so they did a Novasure operation last year and it burns the uterus out and it's stopped it now but i have sjogrens/scleroderma besides, sjogrens on it's own is a nightmare.
Regarding you having antibiotic's, wheather you have Lupus or not...anyone should only have 2 lots the most in a year anymore and they lower the immune system even more.
I will send you an email tomorrow but here are a few site I researched for myself that I wanted to share with you.
http://www.lockergnome.com/reflections/2007/09/14/diagnosed-with-lupus-fibromyalgia-multiple-sclerosis-or-ibs-–-you-may-have-been-misdiagnosed-check-out-leaky-gut-syndrome/
Deenie
Thanks for the info Deenie, the article on Leaky Gut Syndrome was very interesting. I never heard of it. I think the real reason we all are sick is because of all the chemicals that surround us, and the medicines these doctors tell us to take, when half of the time, they are guessing what is wrong with us. Chemicals are every where, and we don't really know what long term effect these toxins we consume in our food and water will do to us later on. I suspect something in my environment was the reason why I have Lupus, no one in my family has it.
Dewing3569 said:
I will send you an email tomorrow but here are a few site I researched for myself that I wanted to share with you.
http://www.lockergnome.com/reflections/2007/09/14/diagnosed-with-lu...–-you-may-have-been-misdiagnosed-check-out-leaky-gut-syndrome/
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learna...
Deenie
Hello Risa,
Will you be seeing your GP or specialist to get this issue sorted out, as you have so many options which maybe causing it to throw at them....sometimes i find womens troubles abit flustrating because it's nothing but a waiting process. xxx
I’m going to my regular doctor to rule out everything so this way when I go to the doctor they won’t have to do much guesswork. I’m going to have them do a urinalysis to rule out kidney function issues hopefully. I know they will look for a UTI and not find one, as I’ve been going through this since forever. If the kidney is fine, I’ll see what the urologists says about my bladder. I don’t like waiting so I hope that everything goes as planned, and I have a resolution before September. It is troublesome with woman because the docs don’t like to dig too deeply. But I will be a pain in the butt if I have to.
Risa,
What i can't understand is for them to totally say it's not your kidneys, why as'nt a biopsy been done to make sure....i'd list down all complaints going which as been mentioned on your thread and this is me....i'd say there's a possible list there i want everyone testing.
I don't stand for nonsense with the doctor's had to much history with them, so that's why i'm seeing another rheumo because i had it out with my last one and he sent a letter to my GP saying it was wrong i was speaking in medical terms....for god sake we're not thick we know what we're going through.
Sorry for going on then Risa...having a rant on your thread i get stressed with them all at times and this is ridiculous how your suffering and they keep wipping it off as nothing wrong...pure madness.
RisaRae said:
I'm going to my regular doctor to rule out everything so this way when I go to the doctor they won't have to do much guesswork. I'm going to have them do a urinalysis to rule out kidney function issues hopefully. I know they will look for a UTI and not find one, as I've been going through this since forever. If the kidney is fine, I'll see what the urologists says about my bladder. I don't like waiting so I hope that everything goes as planned, and I have a resolution before September. It is troublesome with woman because the docs don't like to dig too deeply. But I will be a pain in the butt if I have to.
I feel frustrated too. I really have lost faith in the medical system in the US. It seems like the Docs are overworked, and underprepared for what special needs patients require. Half of the tests I’ve had, I had to request them myself, and my rheumatologist had to give them a second glance, because my PCP had no idea what she was looking for, and she told me this! Meanwhile I Google everything and I’m guiding her on what test she needs. It’s so crazy! I’m in the process of switching PCP and Gyno because these people are horrible! They see too many patients, don’t do any follow up or research because they have to move on to the next, and it takes too long to get appointments! I told the supervisor of my clinic that I felt her clinic was lacking when it comes to customer service. I’m paying so much for the services, I should get the treatment I deserve! Healthcare shouldn’t be treated like a privilege. I once had my appointment cancelled because the doctor was sick. They never bothered to reschedule, and at the time I was very sick and awaiting results from a chest X-ray. I told them I could be dying, you won’t have me scheduled to see someone else? At that time my doc thought I had Sarcoidosis, which could be fatal, and I couldn’t breathe! I had enough of them! Thanks for listening to my rant, glad to get that off my chest! We’ll see how the new docs do.
Your rightin what your saying though about alot of specialist's yet there's so many member's got good ones...you know what it's down to the area where you are and you PCP should'nt need telling never heard nothing like in my life..totally disgusting.
Now with my gyno's they do read my file as i've got a thick one but all sections are split in it for different departments....it's the test running then waiting for another appointment which gets me down and here in the UK you have to wait 6-12 each time there's only been my dermo who's saw me monthly or every 3mths according to how my skins been.
Your correct in what your saying if your paying for the treatment then you should be treated correctly, not fobbed off constantley.
Your welcome mate i think if we dow rant we'd all go pourly mad with how issues are at times but i do hope you can find someone better in times because it is bad how your being treated. xxxx
I learned alot about this disease on my own and when Iwas hospitalized and the docotors visited my room when I was up to it i would grill them with all kind of questions on the Internet about lupus,Once they find out what is wrong with you after all those test and lab work they want to give you said med and put you out,it is time for some new money I don't think so I need to know who, what ,when and why and even whom , until I get those answers I ain't leaving I have been to 3 hospital and I know somebody in this facility know what the hexx is going on,After my departure I was well informed had phone numbers, business cards referrals to other specialist whom I am using now ,one of them she was my rheumy at the hospital she don't have a bed side manner so tomorrow we will see if she past my test before I terminate her services, I am already going through enough ,attitude is something I don't need , I need you to help me make my life as comfortable with lupus and you are my lupus doctor.
RisaRae said:
I feel frustrated too. I really have lost faith in the medical system in the US. It seems like the Docs are overworked, and underprepared for what special needs patients require. Half of the tests I've had, I had to request them myself, and my rheumatologist had to give them a second glance, because my PCP had no idea what she was looking for, and she told me this! Meanwhile I Google everything and I'm guiding her on what test she needs. It's so crazy! I'm in the process of switching PCP and Gyno because these people are horrible! They see too many patients, don't do any follow up or research because they have to move on to the next, and it takes too long to get appointments! I told the supervisor of my clinic that I felt her clinic was lacking when it comes to customer service. I'm paying so much for the services, I should get the treatment I deserve! Healthcare shouldn't be treated like a privilege. I once had my appointment cancelled because the doctor was sick. They never bothered to reschedule, and at the time I was very sick and awaiting results from a chest X-ray. I told them I could be dying, you won't have me scheduled to see someone else? At that time my doc thought I had Sarcoidosis, which could be fatal, and I couldn't breathe! I had enough of them! Thanks for listening to my rant, glad to get that off my chest! We'll see how the new docs do.
Their is nothing wrong with being a butt when you get a answer and feel good with the results good or bad you are well informed , when I went from doctor to doctor to hospital to hospital it was frustrating enough to be in pain it was even worst not knowing what was wrong with me and everyone telling i had to wait.with the severity of pain I was in I wasn't try to hear that ,All I could get was frustrated you walking around swollen hands, feet,and fingers pains out the axx,your joints ache and pop all over you can barely walk and nobody can tell you what is wrong all they can say is come back in two weeks, Don't give you nothing for pain because they don't know whats wrong than you don't get hit with one response you get three, your kidney and heart oh yeah you have lupus, bammm.
RisaRae said:
I'm going to my regular doctor to rule out everything so this way when I go to the doctor they won't have to do much guesswork. I'm going to have them do a urinalysis to rule out kidney function issues hopefully. I know they will look for a UTI and not find one, as I've been going through this since forever. If the kidney is fine, I'll see what the urologists says about my bladder. I don't like waiting so I hope that everything goes as planned, and I have a resolution before September. It is troublesome with woman because the docs don't like to dig too deeply. But I will be a pain in the butt if I have to.
Yes that’s exactly what I’m going through and I’m so tired. I am giving my rheumatologist a chance. He is supposed to be the best of the best according to The New Yorker. So far he has been very helpful, but most of his patients are elderly. Don’t think he was prepared for me. When I sit in the office people stare at me, and probably wonder why I’m there. But I demand the services, if I don’t get what I need I’m out! I have no time to play, I have to work for my kids so I have to feel good. There is no other option.
lia mason said:
Their is nothing wrong with being a butt when you get a answer and feel good with the results good or bad you are well informed , when I went from doctor to doctor to hospital to hospital it was frustrating enough to be in pain it was even worst not knowing what was wrong with me and everyone telling i had to wait.with the severity of pain I was in I wasn't try to hear that ,All I could get was frustrated you walking around swollen hands, feet,and fingers pains out the axx,your joints ache and pop all over you can barely walk and nobody can tell you what is wrong all they can say is come back in two weeks, Don't give you nothing for pain because they don't know whats wrong than you don't get hit with one response you get three, your kidney and heart oh yeah you have lupus, bammm.
RisaRae said:I'm going to my regular doctor to rule out everything so this way when I go to the doctor they won't have to do much guesswork. I'm going to have them do a urinalysis to rule out kidney function issues hopefully. I know they will look for a UTI and not find one, as I've been going through this since forever. If the kidney is fine, I'll see what the urologists says about my bladder. I don't like waiting so I hope that everything goes as planned, and I have a resolution before September. It is troublesome with woman because the docs don't like to dig too deeply. But I will be a pain in the butt if I have to.
Hi RisaRae, cute name (reminds me of lisa rae)... Seek a rheumatologist that will listen, that is what I had to do. I stopped seeing my rheumatologist when she seemed uninterested in my case. Now, I hope for the best. All summer, I am drinking three bottles of water a day, I try to push it to four ( I don't like water) since doing that, I have been urinating 4-5 times a day, which is a record for me. Next week, I will try to drink five bottles a day. Since drinking the water, I am losing weight and feel more hydrated. The fatigued feeling is still here but, when I feel nauseous, I drink warm water and the feeling goes away. I also cut out drinking things with too much acid, it makes me burp and too concentrated it gives me heartburn.
This summer, I have really been indulging in me, and resting alot, since this is 11 months since diagnosis. See if diet change is going to help before the medication.
The staring at you comment at the RA, might be because of your age, you look really young as am I, and they don't expect people so young to have lupus. Just worry about your health and services provided to you, not everything will come as quickly as we want. Take care of yourself, it is important.
RisaRae said:
Yes that's exactly what I'm going through and I'm so tired. I am giving my rheumatologist a chance. He is supposed to be the best of the best according to The New Yorker. So far he has been very helpful, but most of his patients are elderly. Don't think he was prepared for me. When I sit in the office people stare at me, and probably wonder why I'm there. But I demand the services, if I don't get what I need I'm out! I have no time to play, I have to work for my kids so I have to feel good. There is no other option.
lia mason said:Their is nothing wrong with being a butt when you get a answer and feel good with the results good or bad you are well informed , when I went from doctor to doctor to hospital to hospital it was frustrating enough to be in pain it was even worst not knowing what was wrong with me and everyone telling i had to wait.with the severity of pain I was in I wasn't try to hear that ,All I could get was frustrated you walking around swollen hands, feet,and fingers pains out the axx,your joints ache and pop all over you can barely walk and nobody can tell you what is wrong all they can say is come back in two weeks, Don't give you nothing for pain because they don't know whats wrong than you don't get hit with one response you get three, your kidney and heart oh yeah you have lupus, bammm.
RisaRae said:I'm going to my regular doctor to rule out everything so this way when I go to the doctor they won't have to do much guesswork. I'm going to have them do a urinalysis to rule out kidney function issues hopefully. I know they will look for a UTI and not find one, as I've been going through this since forever. If the kidney is fine, I'll see what the urologists says about my bladder. I don't like waiting so I hope that everything goes as planned, and I have a resolution before September. It is troublesome with woman because the docs don't like to dig too deeply. But I will be a pain in the butt if I have to.
Hi Unshoreandscared,
My name is actually Carisa Rae, so that’s where the Risarae comes in. I wanted to chat, but my iPhone is not capable apparently. I don’t worry about the stares, I don’t mind the attention, as long as I am taken care of, and the staff is very nice. I have been pushing myself to drink more water, but I’m not seeing more urine, which leads me to believe something is up. Plus I’m probably in the middle of a flare. So far I’m not trying to go on any steroids just on Plaquenil right now. I can’t deal with anymore side effects. Plaquenil makes me very moody, but I’m also trying to manage that without antidepressants. what I could use now are some good painkillers. I am 31 years old, but I feel like I’m 51 sometimes. I wish I could stop flaring long enough to do some housework and get some rest. I’m trying to manage the best I can but it’s hard. Lupus sucks!
Unshoreandscared said:
Hi RisaRae, cute name (reminds me of lisa rae)… Seek a rheumatologist that will listen, that is what I had to do. I stopped seeing my rheumatologist when she seemed uninterested in my case. Now, I hope for the best. All summer, I am drinking three bottles of water a day, I try to push it to four ( I don’t like water) since doing that, I have been urinating 4-5 times a day, which is a record for me. Next week, I will try to drink five bottles a day. Since drinking the water, I am losing weight and feel more hydrated. The fatigued feeling is still here but, when I feel nauseous, I drink warm water and the feeling goes away. I also cut out drinking things with too much acid, it makes me burp and too concentrated it gives me heartburn.
This summer, I have really been indulging in me, and resting alot, since this is 11 months since diagnosis. See if diet change is going to help before the medication.
The staring at you comment at the RA, might be because of your age, you look really young as am I, and they don’t expect people so young to have lupus. Just worry about your health and services provided to you, not everything will come as quickly as we want. Take care of yourself, it is important.
RisaRae said:Yes that’s exactly what I’m going through and I’m so tired. I am giving my rheumatologist a chance. He is supposed to be the best of the best according to The New Yorker. So far he has been very helpful, but most of his patients are elderly. Don’t think he was prepared for me. When I sit in the office people stare at me, and probably wonder why I’m there. But I demand the services, if I don’t get what I need I’m out! I have no time to play, I have to work for my kids so I have to feel good. There is no other option.
lia mason said:Their is nothing wrong with being a butt when you get a answer and feel good with the results good or bad you are well informed , when I went from doctor to doctor to hospital to hospital it was frustrating enough to be in pain it was even worst not knowing what was wrong with me and everyone telling i had to wait.with the severity of pain I was in I wasn’t try to hear that ,All I could get was frustrated you walking around swollen hands, feet,and fingers pains out the axx,your joints ache and pop all over you can barely walk and nobody can tell you what is wrong all they can say is come back in two weeks, Don’t give you nothing for pain because they don’t know whats wrong than you don’t get hit with one response you get three, your kidney and heart oh yeah you have lupus, bammm.
RisaRae said:I’m going to my regular doctor to rule out everything so this way when I go to the doctor they won’t have to do much guesswork. I’m going to have them do a urinalysis to rule out kidney function issues hopefully. I know they will look for a UTI and not find one, as I’ve been going through this since forever. If the kidney is fine, I’ll see what the urologists says about my bladder. I don’t like waiting so I hope that everything goes as planned, and I have a resolution before September. It is troublesome with woman because the docs don’t like to dig too deeply. But I will be a pain in the butt if I have to.
I agree, Lupus sucks.
When I was first diagnosed, I flared almost every month, it felt like, my face puffed up, my eyes were swollen and I would forget things all the time. It would be a cycle; stress, face feels puffy, coughing, eyes swollen and then forgetfulness. It felt almost non stop. Then, I received the right medicine regimen and changed my lifestyle drastically, eliminated activities that were done out of need to keep busy. My new motto is "If I can live without it then I will do without, until tomorrow". It took a while, read my posts, but I began to just take life as it comes.
I filed ADA with my job so my schedule can be modified to accommodate for side effects of medication and Dr's appointments. This eliminate 80% of my stress immediately. Then developed a regimen and included water and exercise. Once I did this, 8 months into diagnosis, I noticed my flares decreased dramatically. Only when the weather became really hot, I would flare, if I went out and tried to be "cute" LOL.
Now, when the heat advisory is on or when the weather is humid and hot, I plan to scrapbook (which I am really good at now) or watch tv or talk on the phone with friends, until 5 pm or later, when the sun goes down. One person in this LWL chat room taught me to go outside in the early morning hours when its going to be hot to complete errands.
Lastly, when I feel well, I go somewhere, I don't just sit in the house. I get up and enjoy life. Usually going grocery shopping (LOL.) Oh, yeah, when I feel horrible, I order my groceries through online delivery service and have it delivered when I am flaring for over 3 days.
RisaRae said:
Hi Unshoreandscared,
My name is actually Carisa Rae, so that's where the Risarae comes in. I wanted to chat, but my iPhone is not capable apparently. I don't worry about the stares, I don't mind the attention, as long as I am taken care of, and the staff is very nice. I have been pushing myself to drink more water, but I'm not seeing more urine, which leads me to believe something is up. Plus I'm probably in the middle of a flare. So far I'm not trying to go on any steroids just on Plaquenil right now. I can't deal with anymore side effects. Plaquenil makes me very moody, but I'm also trying to manage that without antidepressants. what I could use now are some good painkillers. I am 31 years old, but I feel like I'm 51 sometimes. I wish I could stop flaring long enough to do some housework and get some rest. I'm trying to manage the best I can but it's hard. Lupus sucks!
Unshoreandscared said:Hi RisaRae, cute name (reminds me of lisa rae)... Seek a rheumatologist that will listen, that is what I had to do. I stopped seeing my rheumatologist when she seemed uninterested in my case. Now, I hope for the best. All summer, I am drinking three bottles of water a day, I try to push it to four ( I don't like water) since doing that, I have been urinating 4-5 times a day, which is a record for me. Next week, I will try to drink five bottles a day. Since drinking the water, I am losing weight and feel more hydrated. The fatigued feeling is still here but, when I feel nauseous, I drink warm water and the feeling goes away. I also cut out drinking things with too much acid, it makes me burp and too concentrated it gives me heartburn.
This summer, I have really been indulging in me, and resting alot, since this is 11 months since diagnosis. See if diet change is going to help before the medication.
The staring at you comment at the RA, might be because of your age, you look really young as am I, and they don't expect people so young to have lupus. Just worry about your health and services provided to you, not everything will come as quickly as we want. Take care of yourself, it is important.
RisaRae said:Yes that's exactly what I'm going through and I'm so tired. I am giving my rheumatologist a chance. He is supposed to be the best of the best according to The New Yorker. So far he has been very helpful, but most of his patients are elderly. Don't think he was prepared for me. When I sit in the office people stare at me, and probably wonder why I'm there. But I demand the services, if I don't get what I need I'm out! I have no time to play, I have to work for my kids so I have to feel good. There is no other option.
lia mason said:Their is nothing wrong with being a butt when you get a answer and feel good with the results good or bad you are well informed , when I went from doctor to doctor to hospital to hospital it was frustrating enough to be in pain it was even worst not knowing what was wrong with me and everyone telling i had to wait.with the severity of pain I was in I wasn't try to hear that ,All I could get was frustrated you walking around swollen hands, feet,and fingers pains out the axx,your joints ache and pop all over you can barely walk and nobody can tell you what is wrong all they can say is come back in two weeks, Don't give you nothing for pain because they don't know whats wrong than you don't get hit with one response you get three, your kidney and heart oh yeah you have lupus, bammm.
RisaRae said:I'm going to my regular doctor to rule out everything so this way when I go to the doctor they won't have to do much guesswork. I'm going to have them do a urinalysis to rule out kidney function issues hopefully. I know they will look for a UTI and not find one, as I've been going through this since forever. If the kidney is fine, I'll see what the urologists says about my bladder. I don't like waiting so I hope that everything goes as planned, and I have a resolution before September. It is troublesome with woman because the docs don't like to dig too deeply. But I will be a pain in the butt if I have to.