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Dear All:
Here are some things I have learned from personal experience, medical professional's help and my personal research of information, that may help some people experiencing their first IC troubles. Although not fun to re-live this experience by writing this, I really want to offer hope and help to anyone going through the IC ordeal. As I write this I realize how terrible a situation it was and am relieved at how much better it is. The difference is night and day. So hang in there.
If I knew then what I knew now, here is what I would do: If you have symptoms that feel like a UTI or bladder infection but the urinalysis can not determine any bacteria, don't wait months before you get treated for IC. If your doctor thinks that you need to wait months or a year to be "properly" diagnosed with IC, leave and find other help. Go to a Urologist who specializes in IC. And if you are in a small town go to a bigger town or city if necessary to find more sophisticated medical help. Don't be offended if you are in a small town. I am too and this is what I had to do. The fact is that there are just better opportunities for highly specialized medical professionals in larger cities. This is your health and your life and not the time to worry about offending a local doctor or any other medical professional, no matter what their pedigree. If you can't get the help you need, thank them for their time and get out of there.
I finally found some competent and well informed help in the form of a PA at a Urology Clinic and a Physical Therapist. The PA's school dissertation was on IC and has the ability to think and problem solve. The Physical Therapist specializes in women patients with IC, other bladder problems and works closely with the previously mentioned PA. Damage, that is worsening symptoms and problems, continue to occur if not treated. So get the treatment started ASAP.
What helped right away (things to ask your doctor about): The "first generation type" anti-histamine Hydroxyz Pam. I started with 25 mg. At first it made me sleepy, but after a week my body adjusted. We increased the dosage to 50mg. This immediately helped to eliminate my most irritating symptom of urethra "tingling" making me feel like I had to urinate even after just voiding. I take it in the evening before bed because it can cause drowsiness. One thing is that if the anti-histamine works, it tells you something about the problem.
The PA prescribed Prosed/DS. It worked much better than the Urised or the Pyridium. Also a benefit is that the blue pills are less staining than the yellow pills. (Humor: I felt bad about leaving little yellow spots in all the toilets all over town.) The other thing that was wonderful instant relief was the use of Lidoderm 5% patches. They help with the bladder and abdominal pain without taking more sedating pain relievers. My PA also wanted to give me some control over the symptoms. This and some Lidocain gel for direct application to the urethra helped me to be able to contain the symptoms so I could at least leave the house and function. Unfortunately I developed a reaction to the adhesive in the patch and couldn't use them any more. So you may want to start with just a few and see if you can use them. Also, you can cut them in half and just use a half of one placed directly over your bladder. But when I first used the patches, I felt like they were a God send.
My PA also started me on Elmiron 100mg twice a day. Later increased to 100mg 2 capsules two times a day (you might ask your doctor why not be on the highest dosage?). These things will help but take a long time, so get started ASAP.
While the other things help with the symptoms, the items that are helping "fix" the problem are: the Elmiron, Hydroxyz Pam anti-histamine(actually helps with both), Glucosamine type supplements.
If you can't find competent medical help, you may try some anti-histamine over the counter like Diphenydramine (recommended by my pharmacist as an alternative to Hydroxyz Pam). Obviously the best situation is to be under the direction of a competent medical professional. But if you can't, I would consider this alternative on a short term basis. It will make you tired so take it at night. It might help you sleep through the night. Do not overdose! And if it works this would be something to discuss with the new medical professional your found.
Supplements I think are working: (My PA has agreed that these make sense. Most have to do with epithelial glycosaminoglycan (GAG) synthesis. Helping to rebuild the bladder lining.) CystoProtek as directed on package, N-Acetyl Glucosamine 500mg 1 to 3 times a day, Magnesium Glycinate 400mg 1 or 2 times a day, Omega 3 fatty acid oil like fish oil. Discuss all supplements with your medical professional.
Things to final recovery: It may seem strange but Physical Therapy is probably needed for anyone who has had IC problems for even just a month. My PA prescribed it and it has made the final difference between symptom control and restoring health. The muscles definitely get affected by the bladder and urethra pain and discomfort. Just be careful not to get a physical therapist who doesn't understand IC and wants to treat you as if you just need to strengthen your abdominal and pelvic floor muscles. This could cause more harm. Instead, find a Physical Therapist that perhaps works with IC referrals from Urologists and focuses first on calming the muscles and getting the knots and trigger points to release. This requires some direct trigger point therapy including putting a finger on the trigger points on the urethra in the vagina. So find some one you are comfortable with and trust and listens to you. My PT is a woman and I don't think I would feel comfortable with a man for this treatment. The progress started out slow but it has brought me back much closer to "normal". I can go three or more hours without having to urinate. And the abdominal pain has subsided to minimal and to sometimes none at all. After the muscles eased up, I was given some exercises to strengthen muscles and exercises to help me to control any symptoms if they recur. It has taken me 6 weeks at two times a week. I got significant results in abut 4 weeks. (At first it was once a week but increased to two times a week for faster progress.) I'm at week seven and down to once a week. I also use less Prosed/DS bladder pain pills.
Things I wouldn't do: Don't wait too long for treatment to begin. Much damage was done by not getting started on IC treatments early on. Like most folks, I was on several anti-biotics including Sulfa which seemed to exacerbate the situation. And then the histamines kept causing more inflammation and the muscles kept tightening with the pain. This went on for more than two months and getting worse before diagnosing and treating IC. Although that is a shorter time than a lot of folks so I remind myself to be thankful. But it does get worse with time and a milder case is easier to treat than a worse one. That is why getting help that will get you started on treatment is so important. Don't let them send you home to suffer for weeks alone. Get back in their office and if they still do nothing then go someplace else.
The worst thing I went through while looking for a diagnosis was an ultrasound look for ovarian cancer. Even though they thought that the chance for ovarian cancer was minimal, and would not have ordered the test expect for the fact that I had bad symptoms and they had no other tools to deal with my symptoms. I thought that an ultrasound was non-invasive so that even though I was having bad symptoms, how could it hurt? They did not tell me about putting a probe in my vagina until I was on the table and had completed a "normal" ultrasound on the outside abdomen. The process made all the muscles even more tight and knotted and has slowed my recovery. You could have the part of the ultrasound where the device is on the outside of your abdomen but unless you think ovarian cancer is a real possibility, I wouldn't do it. Had I known in advance about the probe, even at the time of no diagnosis I would not have done it because I knew my symptoms were bad. The probe exam created IC type of symptoms in my vagina. We women tend to go to Gynecologists for female problems. They were good intentioned but didn't know what it was and they had no appropriate tools. It is unfortunate that this group does not seem to be very informed about IC. We will have to work on that.
Comming to terms of Explanation of the mysterious symptoms: One most troubling aspect of IC for me is that I could not understand why and what was causing the symptoms and this caused anxiety for me. I needed a logical explanation in order to deal with it. I have spent hours on the internet reading studies and reports along with discussing them with my PA and PT. I think a good way to look at IC is that " a final straw broke the camel's back" Many factors have created a situation where mast cells are degranulating and releasing anti-histamines that inflame and damage the bladder lining. This causes a domino effect on the pelvic floor muscles by tightening up and creating small knots known as trigger points in those muscles. All this pain causes a rapid firing of synapses making the pain messages trigger even easier. The pain is referred and felt in many areas and with different types of "feelings". (This helps explain why people have so many different types of symptoms) It is a cycle that perpetuates itself. We have to intervene and interrupt this cycle and support the body to rebalance and heal itself.
It still leaves some questions as to what "straws" are contributing. I believe they include stress from illness, improper nutrition or malnutrition, emotional stressful lives and how we cope with it, physical stress from exertion and/or injury. Basically anything that would use and stress our bodies energy and things that trigger the immune system. It is however for many not a matter of abusing ourselves or causing the problem. (I think this only leads to negative emotions that cause more poor health.) Rather there is a combination of events and situations that have happened and our bodies are on overload. The mainstream diet and lifestyle may work for most of the people, most of the time, but for IC folks your body is trying to tell you it is on overload. We have to have some compassion for our bodies that are not coping very well with our situations and find a way to help this body that needs some extra care in order to be healthy.
Nutrition: After all the anti-biotics I took at the beginning, I did have some serious digestion problems. And maybe I had a malabsorption, leaky gut problem developing along with the IC leaky bladder lining. I had to re-start my digestion system by drinking whey protein, digestive enzymes and pro-biotics like acidophilus. I think this also helped my immune system because we now know that a large part of our immune system is in our guts. Good flora is vital. The Physical Therapy also helped me regain control of those tightened muscles so I could get the whole system working again. From the very beginning I believed that nutrition and digestion was the key. I believe that my gut lining was "leaking" just as my bladder lining was "leaking" and causing irritation to the bladder muscle. Vital nutrients are needed to help build those linings, but you have to have a gut that can absorb those nutrients. So getting the digestion system up and working was vital.
Where to from here: I plan on becoming more healthy than when this whole IC thing started. I have a new healthy diet that is much different from the mainstream. I'm only putting premium fuel into this body. As a result, I have lost weight and am much happier for it. I'm not a person that really looked fat but was a "normal" American. I lost 25 pounds. (Hard truth is that most Americans are 20 to 30 pounds overweight.) And yet we may be malnourished (using the malnourished definition of missing vital nutrients.) Probably missing the vital nutrients needed to keep a healthy gut and bladder lining. As a result of my diet change, I really no longer care about chocolate (amazing for me) or any other sugar treat. I now believe that I was addicted to sugar. I'm afraid all those whole wheat "hippies" were right about whole foods and the "bad" sugar
But now I don't have cravings. So really it is easy. It is funny how fear can be a great motivator. I really am afraid of those symptoms and will do anything or give up anything in order not to have them. P.S. Sweet Alternative: A good alternative sweetener is Xylitol. It is not as sweet as sugar but no aftertaste and healthy. And it does not need insulin to process in our bodies so it does not raise sugar and insulin levels. It has the added benefit of killing bacteria that cause cavities. (However, it is dangerous for dogs because they can not process it.)
Best Advice: Listen to yourself when dealing with medical professionals. You know your body better than anyone. So listen to their advice and use their knowledge, but think and choose for yourself. Protect yourself from further injury from procedures, medications, and non action. Be prepared for some angry reactions. A suggestion is to take a spouse or friend who is able and willing to tell the medical person thanks but no thanks we are leaving now, goodbye. You can have a secret sign that tells this person you want to leave and have them step in and do that for you. Physician's first rule to follow is to "do no harm". Follow that advice for yourself. The last thing we need is handling more stressful situations and confrontations when we are seeking help. But unfortunately I encountered just that before I found the help I needed.
Persevere, it's your life!
I am sending the best positive energy and prayers your way!
Here are some things I have learned from personal experience, medical professional's help and my personal research of information, that may help some people experiencing their first IC troubles. Although not fun to re-live this experience by writing this, I really want to offer hope and help to anyone going through the IC ordeal. As I write this I realize how terrible a situation it was and am relieved at how much better it is. The difference is night and day. So hang in there.
If I knew then what I knew now, here is what I would do: If you have symptoms that feel like a UTI or bladder infection but the urinalysis can not determine any bacteria, don't wait months before you get treated for IC. If your doctor thinks that you need to wait months or a year to be "properly" diagnosed with IC, leave and find other help. Go to a Urologist who specializes in IC. And if you are in a small town go to a bigger town or city if necessary to find more sophisticated medical help. Don't be offended if you are in a small town. I am too and this is what I had to do. The fact is that there are just better opportunities for highly specialized medical professionals in larger cities. This is your health and your life and not the time to worry about offending a local doctor or any other medical professional, no matter what their pedigree. If you can't get the help you need, thank them for their time and get out of there.
I finally found some competent and well informed help in the form of a PA at a Urology Clinic and a Physical Therapist. The PA's school dissertation was on IC and has the ability to think and problem solve. The Physical Therapist specializes in women patients with IC, other bladder problems and works closely with the previously mentioned PA. Damage, that is worsening symptoms and problems, continue to occur if not treated. So get the treatment started ASAP.
What helped right away (things to ask your doctor about): The "first generation type" anti-histamine Hydroxyz Pam. I started with 25 mg. At first it made me sleepy, but after a week my body adjusted. We increased the dosage to 50mg. This immediately helped to eliminate my most irritating symptom of urethra "tingling" making me feel like I had to urinate even after just voiding. I take it in the evening before bed because it can cause drowsiness. One thing is that if the anti-histamine works, it tells you something about the problem.
The PA prescribed Prosed/DS. It worked much better than the Urised or the Pyridium. Also a benefit is that the blue pills are less staining than the yellow pills. (Humor: I felt bad about leaving little yellow spots in all the toilets all over town.) The other thing that was wonderful instant relief was the use of Lidoderm 5% patches. They help with the bladder and abdominal pain without taking more sedating pain relievers. My PA also wanted to give me some control over the symptoms. This and some Lidocain gel for direct application to the urethra helped me to be able to contain the symptoms so I could at least leave the house and function. Unfortunately I developed a reaction to the adhesive in the patch and couldn't use them any more. So you may want to start with just a few and see if you can use them. Also, you can cut them in half and just use a half of one placed directly over your bladder. But when I first used the patches, I felt like they were a God send.
My PA also started me on Elmiron 100mg twice a day. Later increased to 100mg 2 capsules two times a day (you might ask your doctor why not be on the highest dosage?). These things will help but take a long time, so get started ASAP.
While the other things help with the symptoms, the items that are helping "fix" the problem are: the Elmiron, Hydroxyz Pam anti-histamine(actually helps with both), Glucosamine type supplements.
If you can't find competent medical help, you may try some anti-histamine over the counter like Diphenydramine (recommended by my pharmacist as an alternative to Hydroxyz Pam). Obviously the best situation is to be under the direction of a competent medical professional. But if you can't, I would consider this alternative on a short term basis. It will make you tired so take it at night. It might help you sleep through the night. Do not overdose! And if it works this would be something to discuss with the new medical professional your found.
Supplements I think are working: (My PA has agreed that these make sense. Most have to do with epithelial glycosaminoglycan (GAG) synthesis. Helping to rebuild the bladder lining.) CystoProtek as directed on package, N-Acetyl Glucosamine 500mg 1 to 3 times a day, Magnesium Glycinate 400mg 1 or 2 times a day, Omega 3 fatty acid oil like fish oil. Discuss all supplements with your medical professional.
Things to final recovery: It may seem strange but Physical Therapy is probably needed for anyone who has had IC problems for even just a month. My PA prescribed it and it has made the final difference between symptom control and restoring health. The muscles definitely get affected by the bladder and urethra pain and discomfort. Just be careful not to get a physical therapist who doesn't understand IC and wants to treat you as if you just need to strengthen your abdominal and pelvic floor muscles. This could cause more harm. Instead, find a Physical Therapist that perhaps works with IC referrals from Urologists and focuses first on calming the muscles and getting the knots and trigger points to release. This requires some direct trigger point therapy including putting a finger on the trigger points on the urethra in the vagina. So find some one you are comfortable with and trust and listens to you. My PT is a woman and I don't think I would feel comfortable with a man for this treatment. The progress started out slow but it has brought me back much closer to "normal". I can go three or more hours without having to urinate. And the abdominal pain has subsided to minimal and to sometimes none at all. After the muscles eased up, I was given some exercises to strengthen muscles and exercises to help me to control any symptoms if they recur. It has taken me 6 weeks at two times a week. I got significant results in abut 4 weeks. (At first it was once a week but increased to two times a week for faster progress.) I'm at week seven and down to once a week. I also use less Prosed/DS bladder pain pills.
Things I wouldn't do: Don't wait too long for treatment to begin. Much damage was done by not getting started on IC treatments early on. Like most folks, I was on several anti-biotics including Sulfa which seemed to exacerbate the situation. And then the histamines kept causing more inflammation and the muscles kept tightening with the pain. This went on for more than two months and getting worse before diagnosing and treating IC. Although that is a shorter time than a lot of folks so I remind myself to be thankful. But it does get worse with time and a milder case is easier to treat than a worse one. That is why getting help that will get you started on treatment is so important. Don't let them send you home to suffer for weeks alone. Get back in their office and if they still do nothing then go someplace else.
The worst thing I went through while looking for a diagnosis was an ultrasound look for ovarian cancer. Even though they thought that the chance for ovarian cancer was minimal, and would not have ordered the test expect for the fact that I had bad symptoms and they had no other tools to deal with my symptoms. I thought that an ultrasound was non-invasive so that even though I was having bad symptoms, how could it hurt? They did not tell me about putting a probe in my vagina until I was on the table and had completed a "normal" ultrasound on the outside abdomen. The process made all the muscles even more tight and knotted and has slowed my recovery. You could have the part of the ultrasound where the device is on the outside of your abdomen but unless you think ovarian cancer is a real possibility, I wouldn't do it. Had I known in advance about the probe, even at the time of no diagnosis I would not have done it because I knew my symptoms were bad. The probe exam created IC type of symptoms in my vagina. We women tend to go to Gynecologists for female problems. They were good intentioned but didn't know what it was and they had no appropriate tools. It is unfortunate that this group does not seem to be very informed about IC. We will have to work on that.
Comming to terms of Explanation of the mysterious symptoms: One most troubling aspect of IC for me is that I could not understand why and what was causing the symptoms and this caused anxiety for me. I needed a logical explanation in order to deal with it. I have spent hours on the internet reading studies and reports along with discussing them with my PA and PT. I think a good way to look at IC is that " a final straw broke the camel's back" Many factors have created a situation where mast cells are degranulating and releasing anti-histamines that inflame and damage the bladder lining. This causes a domino effect on the pelvic floor muscles by tightening up and creating small knots known as trigger points in those muscles. All this pain causes a rapid firing of synapses making the pain messages trigger even easier. The pain is referred and felt in many areas and with different types of "feelings". (This helps explain why people have so many different types of symptoms) It is a cycle that perpetuates itself. We have to intervene and interrupt this cycle and support the body to rebalance and heal itself.
It still leaves some questions as to what "straws" are contributing. I believe they include stress from illness, improper nutrition or malnutrition, emotional stressful lives and how we cope with it, physical stress from exertion and/or injury. Basically anything that would use and stress our bodies energy and things that trigger the immune system. It is however for many not a matter of abusing ourselves or causing the problem. (I think this only leads to negative emotions that cause more poor health.) Rather there is a combination of events and situations that have happened and our bodies are on overload. The mainstream diet and lifestyle may work for most of the people, most of the time, but for IC folks your body is trying to tell you it is on overload. We have to have some compassion for our bodies that are not coping very well with our situations and find a way to help this body that needs some extra care in order to be healthy.
Nutrition: After all the anti-biotics I took at the beginning, I did have some serious digestion problems. And maybe I had a malabsorption, leaky gut problem developing along with the IC leaky bladder lining. I had to re-start my digestion system by drinking whey protein, digestive enzymes and pro-biotics like acidophilus. I think this also helped my immune system because we now know that a large part of our immune system is in our guts. Good flora is vital. The Physical Therapy also helped me regain control of those tightened muscles so I could get the whole system working again. From the very beginning I believed that nutrition and digestion was the key. I believe that my gut lining was "leaking" just as my bladder lining was "leaking" and causing irritation to the bladder muscle. Vital nutrients are needed to help build those linings, but you have to have a gut that can absorb those nutrients. So getting the digestion system up and working was vital.
Where to from here: I plan on becoming more healthy than when this whole IC thing started. I have a new healthy diet that is much different from the mainstream. I'm only putting premium fuel into this body. As a result, I have lost weight and am much happier for it. I'm not a person that really looked fat but was a "normal" American. I lost 25 pounds. (Hard truth is that most Americans are 20 to 30 pounds overweight.) And yet we may be malnourished (using the malnourished definition of missing vital nutrients.) Probably missing the vital nutrients needed to keep a healthy gut and bladder lining. As a result of my diet change, I really no longer care about chocolate (amazing for me) or any other sugar treat. I now believe that I was addicted to sugar. I'm afraid all those whole wheat "hippies" were right about whole foods and the "bad" sugar
But now I don't have cravings. So really it is easy. It is funny how fear can be a great motivator. I really am afraid of those symptoms and will do anything or give up anything in order not to have them. P.S. Sweet Alternative: A good alternative sweetener is Xylitol. It is not as sweet as sugar but no aftertaste and healthy. And it does not need insulin to process in our bodies so it does not raise sugar and insulin levels. It has the added benefit of killing bacteria that cause cavities. (However, it is dangerous for dogs because they can not process it.)Best Advice: Listen to yourself when dealing with medical professionals. You know your body better than anyone. So listen to their advice and use their knowledge, but think and choose for yourself. Protect yourself from further injury from procedures, medications, and non action. Be prepared for some angry reactions. A suggestion is to take a spouse or friend who is able and willing to tell the medical person thanks but no thanks we are leaving now, goodbye. You can have a secret sign that tells this person you want to leave and have them step in and do that for you. Physician's first rule to follow is to "do no harm". Follow that advice for yourself. The last thing we need is handling more stressful situations and confrontations when we are seeking help. But unfortunately I encountered just that before I found the help I needed.
Persevere, it's your life!
I am sending the best positive energy and prayers your way!
Caitlin
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