Aa
What is it?
I was diagnosed with IC a couple years back. I had my ups and downs, but was feeling alright, minimal symptoms for the last year or so. I am in pelvic floor therapy. I recently had my gallbladder removed and since my symptoms have returned in a terrible way. So I have been researching again. My symptoms are currently: almost constantly a burning in my urethra, pain after I urinate, no pain while filling, sometimes there is pain/pressure in my bladder, I am also urinating large amounts very often. I have been to three urologists that I feel are not helping much. My next step is having a test to see how my bladder works, but that is a couple weeks out and I seem to be getting worse. I feel very lost at this point, especially after leaving the urologist office. I am wondering if these are symptoms of IC or something else? My doctor will not put me on the medications for IC even after I asked, he thinks my symptoms will settle down after a few more weeks or so. I filled my Macrobid prescription yesterday(it is a 3 day course my urologist gives me to fill when I think I need it) in hopes of some of the burning subsiding, no help. I just need to be pointed in a direction of help. Thanks.
MEDICAL PROFESSIONAL
Hi Illafre,
I read the above notes. You clearly have a problem. First, you need to go the Interstitial Cystitis Association (ICA) web site (ichelp.org) and find the IC expert doctor in your area. They have a national list of IC friendly doctors and experts. Getting you into the right hands is the first step. Based on the above, its highly probable you have IC. I assume your urine cultures are negative and the doctor who did your hydrodistention saw the changes of IC. Symptoms of IC vary from person to person but burning, pain, pressure in the urethra and/or bladder are classic. There are a number of strategies to treat IC, but I generally start by educating the patient about the disease by giving them the ICA brochures and refer them to the web site for info. Secondly, I start the ICA diet in everyone. It eliminates acidic foods like the citrus fruits, eliminates alcohol, caffeine and the carbinated drinks (all bladder irritants), the spicy foods etc. I'm sure you have access to this list. I also start everyone on Elavil at low doses and increase slowly. Elavil is an antidepressant but it has a direct effect on pelvic pain and helps patients sleep. It does have some possible side effects and everyone can't tolerate it. I works quickly, where Elmiron takes months to work, if at all. If you are really having an exacerbation and need fast relief, a bladder instillation treatment may be the fastest option. There are two options: the first is a combination of DMSO/heparin and solumedrol. Its a weekly instillation for 6 weeks and acts as an antiinflammatory agent to block pain. A new option is placing a solution of lidocaine into the bladder. Lidocaine is a local anesthetic used for minor surgery all the time. A solution is instilled into the bladder daily for 5 days to block the pain and frequency. The results of a multicenter trial showing great success in using this for patients who are having a flare up was reported at the recent American Urological Association meeting. I started using it on my first patient this week. There are other options if these don't work but this is an outline of the initial steps. Your pelvic floor physical therapy is also a great option. Again, I can't stress the importance of getting the right doctor even if you have to travel. Another option--all IC experts do second opinion visits. I basically look at the treatment history, previous test results and treatment outcomes and come up with a detailed treatment plan that your local Urologist executes.
As you have found out, unfortunately not all urologists are sympathetic and caring when it comes to this difficult disorder. Find a regional expert for the treatment plan, then someone local someone who will take the time to work with you.
Good Luck
I read the above notes. You clearly have a problem. First, you need to go the Interstitial Cystitis Association (ICA) web site (ichelp.org) and find the IC expert doctor in your area. They have a national list of IC friendly doctors and experts. Getting you into the right hands is the first step. Based on the above, its highly probable you have IC. I assume your urine cultures are negative and the doctor who did your hydrodistention saw the changes of IC. Symptoms of IC vary from person to person but burning, pain, pressure in the urethra and/or bladder are classic. There are a number of strategies to treat IC, but I generally start by educating the patient about the disease by giving them the ICA brochures and refer them to the web site for info. Secondly, I start the ICA diet in everyone. It eliminates acidic foods like the citrus fruits, eliminates alcohol, caffeine and the carbinated drinks (all bladder irritants), the spicy foods etc. I'm sure you have access to this list. I also start everyone on Elavil at low doses and increase slowly. Elavil is an antidepressant but it has a direct effect on pelvic pain and helps patients sleep. It does have some possible side effects and everyone can't tolerate it. I works quickly, where Elmiron takes months to work, if at all. If you are really having an exacerbation and need fast relief, a bladder instillation treatment may be the fastest option. There are two options: the first is a combination of DMSO/heparin and solumedrol. Its a weekly instillation for 6 weeks and acts as an antiinflammatory agent to block pain. A new option is placing a solution of lidocaine into the bladder. Lidocaine is a local anesthetic used for minor surgery all the time. A solution is instilled into the bladder daily for 5 days to block the pain and frequency. The results of a multicenter trial showing great success in using this for patients who are having a flare up was reported at the recent American Urological Association meeting. I started using it on my first patient this week. There are other options if these don't work but this is an outline of the initial steps. Your pelvic floor physical therapy is also a great option. Again, I can't stress the importance of getting the right doctor even if you have to travel. Another option--all IC experts do second opinion visits. I basically look at the treatment history, previous test results and treatment outcomes and come up with a detailed treatment plan that your local Urologist executes.
As you have found out, unfortunately not all urologists are sympathetic and caring when it comes to this difficult disorder. Find a regional expert for the treatment plan, then someone local someone who will take the time to work with you.
Good Luck
Hi llafre
I'm sure the DR will be answering your post soon, but I just wanted to say how surprised I am that this DR wont put you on the IC medication. I assume your refering to elmiron.The only reason I could even imagine is if you have liver problems because it is metabolized through the liver.
If you dont have any liver problems,even if they think this flare will go away, Elmiron is thought to adhere to the bladder lining and create a coating and help restore the GAG layer(glycosaminoglycan) which is the layer that is damaged by IC so it could posssibly help lessen these ups and downs you have.
It can take 3-6 months to work and some DR's will keep a patient on it for up to a year like I was, but if your one of the 30-40% of IC sufferers who it helps it is worth the wait.
I think you should get a second opinion on treatment. Elmiron is the only FDA approved medication for the treatment of IC so if you have no liver problems, to not even let you try it doesnt seem right. It's usually the first thing that is tried.
With IC we need DR's who are going to work with us to try any treatment we may think will work. This is a condition that has no rhyme or reason so to hold a known treatment from us is damaging.
I just cant get over your DR letting you suffer with these symptoms for a few more weeks in hopes that they will settle down when there are so many medications that are known to help symptoms, like hydroxozine and pyridim.
From one patient to another, if your DR isnt doing all they can to help your symptoms even if your feeling fine for weeks or months at a time, get another opinion so you have all the chance to have more "ups".
also try some chamomile or Marshmallow tea. Both of those can help relax the bladder a little.
I hope you start to feel better and the DR can point you in the right direction.
I'm sure the DR will be answering your post soon, but I just wanted to say how surprised I am that this DR wont put you on the IC medication. I assume your refering to elmiron.The only reason I could even imagine is if you have liver problems because it is metabolized through the liver.
If you dont have any liver problems,even if they think this flare will go away, Elmiron is thought to adhere to the bladder lining and create a coating and help restore the GAG layer(glycosaminoglycan) which is the layer that is damaged by IC so it could posssibly help lessen these ups and downs you have.
It can take 3-6 months to work and some DR's will keep a patient on it for up to a year like I was, but if your one of the 30-40% of IC sufferers who it helps it is worth the wait.
I think you should get a second opinion on treatment. Elmiron is the only FDA approved medication for the treatment of IC so if you have no liver problems, to not even let you try it doesnt seem right. It's usually the first thing that is tried.
With IC we need DR's who are going to work with us to try any treatment we may think will work. This is a condition that has no rhyme or reason so to hold a known treatment from us is damaging.
I just cant get over your DR letting you suffer with these symptoms for a few more weeks in hopes that they will settle down when there are so many medications that are known to help symptoms, like hydroxozine and pyridim.
From one patient to another, if your DR isnt doing all they can to help your symptoms even if your feeling fine for weeks or months at a time, get another opinion so you have all the chance to have more "ups".
also try some chamomile or Marshmallow tea. Both of those can help relax the bladder a little.
I hope you start to feel better and the DR can point you in the right direction.
I wanted to post a reply back to you where everyone could see, so if anyone else has any input they could give it. A couple of things before I get into a somewhat short history, the Azo I am taking is not with cranberry, it is like Uristat, bladder numbing medicine you can buy over the counter, not as strong as pyridium. I also tried chamomille tea last night, I am not sure if it helped or not as my symptoms flucuate all the time.
I wanted to give a little history to answer some of your questions, hoping my concerns will make a little more sense. After going to my primary dr. for months with recurrent UTI symptoms, but also with these sypmtoms I get a build up of yeast where it is bothersome, but not an infection. My symptoms she felt also cycled with my menstral cycle. So my dr, sent me to see my gyn. She thought IC or endometriosis. She put me on meds(don't know what) and said if my symptoms cycle and return in a couple of weeks she would think it is endo. They did return so she did laproscopy to find that I did not have endo, but my uterus and bladder were fused together with scar tissue presumably from my c-section 7 years earlier. She thought I would get better after the separation of them, but I did not and she sent me to my first 2 urologists. They did do the cystoscopy and hydrodistention and said that I had findings of IC, but could not say for sure. Their options for me because they were not quite sure of what was going on: take the IC meds, have a hysterectomy, or do nothing because my sypmtoms were minimal at the time. I did not like either of the first two because it told me they did not know!!
I went to my current urologist because he is supposed to know a lot about IC. He never looked at my pictures or records from my previous urologists, when I tried to explain my story, he stopped me and told me only to answer the questions he asked. He is very abrasive, but assures me he knows what he is doing, but he has not done anything for me. My physical therapist, I believe questions the IC diagnosis, but knows something is wrong. I am having the bladder test done in a week and a half because my uro. says one reason for the bladder hurting after I void could be me not being able to finish urinating because the sphinter muscle closes my urethra and then causes my bladder to cramp. When this is not happening I have the other end, going to the bath room all the time and voiding very large amounts.
Sorry for the length, but maybe the doctor will read this and have more insight. After I get your response and the doctors I will be looking into yet another urologist I think.
Your replying to me about this means so much, I always feel so alone. Thank you.
I wanted to give a little history to answer some of your questions, hoping my concerns will make a little more sense. After going to my primary dr. for months with recurrent UTI symptoms, but also with these sypmtoms I get a build up of yeast where it is bothersome, but not an infection. My symptoms she felt also cycled with my menstral cycle. So my dr, sent me to see my gyn. She thought IC or endometriosis. She put me on meds(don't know what) and said if my symptoms cycle and return in a couple of weeks she would think it is endo. They did return so she did laproscopy to find that I did not have endo, but my uterus and bladder were fused together with scar tissue presumably from my c-section 7 years earlier. She thought I would get better after the separation of them, but I did not and she sent me to my first 2 urologists. They did do the cystoscopy and hydrodistention and said that I had findings of IC, but could not say for sure. Their options for me because they were not quite sure of what was going on: take the IC meds, have a hysterectomy, or do nothing because my sypmtoms were minimal at the time. I did not like either of the first two because it told me they did not know!!
I went to my current urologist because he is supposed to know a lot about IC. He never looked at my pictures or records from my previous urologists, when I tried to explain my story, he stopped me and told me only to answer the questions he asked. He is very abrasive, but assures me he knows what he is doing, but he has not done anything for me. My physical therapist, I believe questions the IC diagnosis, but knows something is wrong. I am having the bladder test done in a week and a half because my uro. says one reason for the bladder hurting after I void could be me not being able to finish urinating because the sphinter muscle closes my urethra and then causes my bladder to cramp. When this is not happening I have the other end, going to the bath room all the time and voiding very large amounts.
Sorry for the length, but maybe the doctor will read this and have more insight. After I get your response and the doctors I will be looking into yet another urologist I think.
Your replying to me about this means so much, I always feel so alone. Thank you.
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