I am at a loss about what to do next.

[Angela82]

Hi. My name is Angela. I am a 23 year old female in Wisconsin. I stumbled across this site today, and I am really happy to see that there are other people out there who might be going through the same thing I have been, and I feel alone out there with what is happening to me. I would like to share some of my story, and also ask for some advice about what I need to do next, or where I should turn. I am really scared about what is happening to me. :mad:

About two years ago, I started to develop chronic, and serious bladder and kidney infections. One of the kidney infections was so painful that I actually fell down on my kitchen floor and passed out for a few seconds. At first, the doctors would give me generic Bactrim. My infection would come back full force during treatment and after. Once it was established that Bactrim was not a good antibiotic for me, CIpro was given. Cipro worked very well, and I have never had ANY side effects from cipro, or any other medication I have ever taken, not even fatigue. But even when Cipro would clear up my infection, I would still get 2 a month or so. That lasted for a good year, with recurring infections. I was very lucky to have insurance until recently, so my medications were free and a lot of cultures and scans could be done. Sometimes I would have to go into the ER, and there have been over ten CT scans done on me in the past two years.

For this past 7 or 8 months, I have been infection free. However, since my last infection, I have been left with chronic, constant burning and pain where pee. When i go to the bathroom it hurts, in between the times i go it burns, and sex is so painful I cannot have it with my boyfriend. It is painful where I pee, and feels like I have a HUGE bladder infection when I try to have sex. WHen we stop, it goes away and returnes to the normal pain. Where my bladder is in my abdomen is, I am sore a lot, and in the morning when I wake up with a full bladder or have not urinated in a good many hours, it feels like my bladder is on fire. After I go to the bathroom in the morning, it feels like someone kicked me where my bladder is, or like it has been pulled on somehow.

A month ago, I tracked down a CD copy of EVERY CAT scan that has been done on me, and I extracted the reportes made by the radiologist. In 7 out of 10 of the reports, they not that my bladder appears distended, I am not sure what that means. Also for the last year and a half, there is a small kidney stone residing in my left kidney. It has never moved, is less than 2mm, and doesnot cause me any problems at all. The doctors believe it is a direct result of all of the infections I had, and formed during that time. THey do not believe it will come out, or that i will feel it because it was hard for them to even see on the CAT scan.

EVerytime this year since the last infection, I will go into the doctor or hospital thinking I have an infection because of all this pain, and we find out through urine and blood tests that there is NO white blood ( or over abundance of it), and NO leukacytes( not sure if that is spelled correctly), which are two of the things that are tell tale signs of bladder. UT infections. However, in EVERY SINGLE test, there has been red blood, ranging from what they have said as huge amounts, to small amounts, and there has not been a single urine test this year that usually large amounts of red blood have been detected. I have probably had 15 to 20 urine screens this year....

I did see a urologist before my insurance ran out. He was not a very nice man, and did not appear to be very concerned at all about my problems. I was told that these infections were from having sex ( I would like to note here that at the time of my infections, I was NOT sexually active, I just started having sex recently with my boyfriend, and I did not even have a boyfriend when all this started to happen. Due to my inability to have sex because of the pain, we are having problems now =( ) I have always had regular pelvic exams, cultures, and pap smears, because I have been on the depo provera shot for four years. It is a requirement to get these done and kept up with to stay on the depo shot. I have never ever had an infection that was sexually aquired. I dont think he believed me, or didnt have answers. WHen i showed him the report about the kidney stone, he fought with me, saying it was on the right side, and I had to physically point out in the report where it specified that the stone resides in my left kidney. He ended up writing me a 6 month prescription of Macrobid 100mg, instructing me to take one a day, and a 90 day supply of cipro 1000mg for an active infection to get me out of his office, telling me to come back in a year if things hadent gotten better. I was mortified and felt degraded by this man for his lack of sensitivity and concern about people who come to him for care, and shortly after that my insurance ran out.

Since then, I have had to resort to going to the ER everytime things get too bad for me to handle. No doctor will take me with no insurance, unless I pay hundreds of dollars upfront. I keep thinking I have an infection because of the pain, I go in, and all that is found is large amounts of red blood. I did find that taking URISTAT or Pyridium will work if I take it in very large amounts, but then I always vomit first because when taken in large amounts it will upset the stomach. However, the pain is bad enough that I have been willing to put up with puking first if it will relieve just a little of this . Ibprofun will not work, and I had to save money to go to a pain clinic where I was prescribed a small amount of vicodin every month. THe vicodin will work a LITTLE bit for the first hour and a half after taken, but does not do much after that. I believe that doctors who do not know much about IC or urinary/bladder problems are very reluctant to provide someone my age ( I am 23) with pain pills that work out of liability and fear issues.

I have not had a cystoscopy preformed because they will not do this in the ER, and I havent figured out what I would need to say to them to make them realize that this would be an appropriate procedure to preform in an ER visit. I am also deathly afraid of this procedure, because I did have a cathedar inserted once, and I can say that this was the most painful experience I can remember having in my whole life. I had a tubal pregnancy once, and my fallopian tube ruptured, it was VERY painful in itself, but I can honestly say that that little cathedar was more painful than when my tube ruptured. I think there is something wrong inside of me that would make a cathedar so painful. I know it is typically an uncomfortable experience, but it was painful to the point that my blood pressure rose to over 157 on the top number, I broke out in a sweat, and got lightheaded. It felt like someone put a knife all the way up to my stomach.

I am sorry for the lenght of my post. I have no one to talk to about this, and no where to turn. I do not know if these symptoms are similar to IC, but I am starting to believe that I may have IC, and I just dont know what to do without insurance, or what works to relieve the pain and symptoms. If ANYONE out there reading this might have some advice for me or would like to talk to me, I would really like that. I feel like I am all alone with this problem. THank you for listening to my very long post.

Angela

[July]

Hi Angela,
I'm so sorry to hear that you are going through such pain. I'm glad you have found us! You are not alone! There are many extremely knowledgeable people on these boards who I'm sure will see your post soon and give you some wonderful advice to start out with. Diet modifiications help many people. If you go to the main page of ic-network.com, you will find diet information as well as other in depth information about IC and bladder plan, a lot of self-treatment tips. You also may be elgible for disability assistance. I'll keep you in my prayers. :grouphug:

[Angela82]

Hi thanks for responding so fast this seems like a very supportive community! I wanted to reply that for the last year i made significant changes in my diet. I was warned by doctors at the start of these problems that diet may be involved. I have discontinued any kind of red meats, and junky food for over a year. I have more energy, and even lost weight, which were some nice perks, but it did not effect my symptoms. My typical diet everyday includes LOTS of veggies like brocalli, asparagus, and I eat a lot of fish. I am also way into organic food. At first, I hated the food, but once I started to reap the benefits, I liked it a lot mor

[ICNDonna]

I honestly think you need to see a urologist. The Patient Handbook (link above) has a section on symptoms and diagnosis, which should help you determine whether it's possible what you have is IC. You'll also find diet information there --- and I suggest you give an IC diet a try to see if it will help.

I wish I could help more.

Donna

[emilyrose197377]

:welcome:

:grouphug:

[amber sevy]

:welcome: I am glad you found our IC family and that is what we are a family of people who are going threw the same things that you are. I am so sorry for your pain. You are the only person that can make doctors listen. talk until someone listens to you. Never let them tell you "it is all in your head" :headbang: But most of all please do not lose hope that is the only way you can get threw this. Also know that we are all here for you and I will keep you in my prayers. :angel: :pray:

[sandramac]

:welcome: :grouphug:

[vivig14]

you poor thing!!! you are on the right track. GET ALL YOUR RECORDS, PUT THEM TOGETHER YOURSELF, and don't be passive about your health. it doesn't sound like ur. I noticed there was a section in this site for people w/o insurance or without sufficient income. check it out. also, check out what studies are being done in your area, and maybe you can get some free tx that way. they just called me for that "painful bladder" study that has been advertised all over. they are going to send me some info about it. they say i qualify. however, i have already been diagnosed with IC. It is all so overwhelming, I know. You are not alone. Hang in there. Depending on what state you r in, maybe you will qualify for med insurance of some sort??? Then you can go to the hospital specialists???

[Angela82]

I am going to go over the diet thing. I am in wisconsin and unless you have children ( which i do not) you cannot recieve medicaid. The only other exception is to get on disability. I MAY be able to do that, since this has actually caused me to stop going to school and enroll online for this semester, but I have no clue where i would start as to finding out how to do that. I keep very organized records of my medical stuff, and I have a very thick folder that pertains to this problem, each one with them discharging me as having unexplained chronic cystitis, coloc, and blood in the urine. As I said, they have not done a cystoscopy, but I have a theory that if one could somehow be preformed under anestethic , they would find either scarring or lots of bleeding, because there is constantly red blood being detected in my urine. Does this sound like IC to you guys?

Thanks for welcoming me. Can anyone tell me if they have also found relief through Uristat, vicodin, or any other pain relief drug? I am looking for anything that might help. I have not seen uristat mentioned too much in these forums yet but I would like to say if you guys have problems with the burning feeling, te uristat might help .

Also, does anyone find that their symptoms worsen during sex? What the heck do you do about that?

[vivig14]

hi again,

yea--i'm in chicago, same policy with medicaid. ugh. i have to say when i was diagnosed in '97, i first did the Ic diet, and then other things, which scared and hurt me (bladder installations in particular). The IC diet was a sure thing. Helped a lot so i could get my thoughts and plan of action together to proceed. I became strict with it though. socially, it's a bit awkward to explain. i just say i have "digestive issues" and can't deal with acidity or carbonation. people get confused when I won't eat a banana, and I haven't figured out a good "out" for that one yet! Maybe I will say i just don't like them!!!

Phy tx helps a lot, too. You'll learn more about that as you go along, and if it is indicated in your situation.

valium helps. it a relatively safe and easy drug, which has been shown to help with pain. i think the generic is called diazepam, and the IC handbook by Dr. robert moldwin recommends like 3mgs three times daily. if you can go to a clinic and they prescribe, may be cheap out of pocket, not sure. the other drug, elavil, or generic amitryptiline is supposed to be also effective for pain in small dosages. it is an antidepressant with anti-pain properties. my guess= cheap also.

good luck with it all. you'll slowly figure it out and make it more manageable. good nite.

oh, relaxing with a heating pad under me after a bath is a definite freebie prescription. and if it burns to pee in the toilet, try peeing in the warm bath. if you live with someone else, just wipe down the tub, they'll never know!

[Alex11]

Hello. I'm new here, too, but a lot of what you wrote in your initial post was the same with me. I went three years with a lot of red blood in my urine, constant UTI's and when I was getting alarming amounts of blood in the urine - they'd just send it to a lab and call me 3 days later to say it showed nothing. It made me think I was crazy or that it was all normal. Then when I had pain with intercourse they made me take birth control every day (active pill only) because they were convinced that was my problem. Why does it take so long for doctors to get a clue? This caused me to stop playing soccer for years. I started playing again last month and had to carry a spare pair of underwear around due to stress incontinence. This problem made me a hermit. I didn't want to go out and be doubled over in pain and not be able to explain what was wrong with me - because no one knew. Plus going out with friends and running to the bathroom every 5 minutes was no fun either.

Since last night I have been reading all the information here and feel like I'm finally understood and now I know I'm not crazy. My pain is very real and so is my problem.

So, even though I was no help at all - I'd like to say "welcome" and thanks for sharing. I hope you can get a diagnosis soon. If there is anything I can do from good old Cincinnati - just let me know.

[Briza]

Hi Angela
Welcome and sorry for what you have been going through!
I don't know if you have IC, but I can answer just a few of your questions. Many of us take Uristat (prescription name Pyridium) for the burning feeling. You'll see it in my signature below.
Many of us are have some type of back up painkiller. Mine is Tylenol 3. It works for me. I don't think many people here take it, maybe because it's not as strong as vicoden?, but there are many people here who take vicoden for their pain. Others have other longer lasting pain meds. And yes, sex is an issue for the majority of us, at some point or another. If it hurts really bad right now, the best advice I can give you is to abstain until you get your symptoms under control. I know, that sucks. :(
Hang in there and don't give up til you find a doctor that will help you figure out what is going on!

[Angela82]

Wow you guys are really great with helping out and responding here!

I did look over the diet thing, and have been reading up as much as I can the past couple hours, and on the bad list, one thing I noticed on the bad list was MSG. This struck me as unusual because my problems started two years ago, and two years ago I met my boyfriend ( He was not my boyfriend until about a year ago though) and he is asian. He uses LOTS of msg in his cooking, and I started using it too, buying it at the asian store because it makes the food taste better, and it seemd like a little known secret. I had never even heard of MSG before, but almost every asian person I met through him used MSG. Well I use it in my cooking daily now, and I am starting to wonder if MSG may be triggering this or making the symptoms fester/worsen.

So then I looked up MSG and i found out there are a ton of other bad things about it, and I threw the bag of MSG out lol. I feel kind of stupid because it seems that lots of people ask for NO MSG when they go to chinese restaraunts, and most of them know it is bad for you, and I had no clue. He told me its just salt lol. I am going to cut that out of my diet and see what happens. Other than that, I found that the things on the good list are things i incorporate into my daily diet ususally, with the other exception being my favorite thing-pistachios. But if those could make this worse then I will definetly give those a break and see what happens.

I dont like coffee, never did. I do not drink alcohol ever, and it is rare for me to drik a whole can of soda in a 2 month period. I am big on milk, and I have one of those culligen water things in my kitchen for fresh cold water.

I think this MSG may have something to do with this, but I dont think that my diet is the cause of all this pain and blood in my urine all the time. I looked at the low income resources, and I dont think i could apply for disability. They turn down almost 100% of people in my state, and I really wish there was some way I could see a urologist who cares.

Are there any other tests out there you guys know of besides a cysto that might help to diagnose this? On the symptoms sheet, I have EVERY single one of them with the exception of lots of frequency.

Also I noticed people on here stating that they were having problems with getting their doctors to prescribe them adequate pain relief just like me. I would like to tell anyone with this problem that there are consult services and pain clinics with real doctors that are cheaper than doctors offices. They will prescribe you the right pain meds as long as you can prove to them that you have this medical condition either through test/lab reports or medical records. If anyone wants info on that just PM me or email me at asikorra82@hotmail.com. I want to help others if I can just like they are helping me.

I signed up for the clinical trial about the painful bladder thing that they posted about in feburary. It is in chicago, and I am in Wisconsin, but at this point i would be willing to drive two hours to participate in this if it means i could get even a LITTLE relief or some answers. It would be a good way for me to speak with some professionals who deal with these specific issues considering I dont know what else to do with my insurance issue. I could stop school and try to work to get insurance ( I am taking 17 credits right now !!) BUt it would put me years back in my education and I am in so much pain at times I dont know how i could handle or control it if something happened at work. My mom lives out of state and my dad died and I really dont have any family or anyone to talk to about this so I am really grateful to have found you guys here!

[ISONormal]

Angela,
Welcome. Keep staying with us and reading the board and the IC network website as well as the IC Association website (ichelp.org). Both are excellent. IC is like learning a new language. THere's so much to learn about it, and about yourself and your symptoms and how you react to various medications, that it will take you time to learn it. But keep at it, and do it aggressively, like you have already been doing. We're all learning, at various stages, but we can all help with information, our experiences, and our encouragement. And a shoulder to lean on in tough times. You really need to get a good urologist and get that definitive diagnosis. Buy Dr. Robert Moldwin's book on IC, and look at the ICA site and this one for more recent information (in video form or in book form) on IC. It'll save you tons of time. If you do have IC, which it sounds like you do, you need to get on meds to treat the IC, not just the pain, although treating both is important. The firstline meds are Elmiron, Atarax, and Elavil. Those are the basics and others can fit into that regimen as well.

[Emma's Mommy]

This website is great for support. I am new to IC i didn't start showing syptoms until after my daughter was born in 2005 andit didn't egt really bad until Feb of this year. I found the IC diet has really help me cut back on flare ups ALOT!!! I follow it hard core, no soda,no caffene, no chocolate, no carbinated drinks...it has been better sence i started doing this but i still have my bad days. Advil (Ibprophin) is really bad for IC bladders because it can upset it and make it worse, so until you get your pain under control i would stick to tylenol.

I am having a cycto/hyrdo on April 21st to conferm my IC but i am currently on Amitriptyline (elavil) and take percocet as needed for pain. I also have a RX for perydium (uristat's active ingredent) and it is WAY cheaper even without insurance. I would to that local clinic and at least get some perydium and something for pain.I do have insurance but i know even without it is not that expensive and the relief it will give you is worth any price!!!

for the sex problem i know it burns like hell....try going to the bathroom both before and after sex....FOREPLAY, and rinsing yourself off after sex....if it still burns take an ice pack and place it between your legs....INSTANT RELIEF!!!

[Angela82]

HI Emma's Mom, i see you have discoverd the ice thing too huh :) One morning I took a frozen water bottle, and this sounds pretty weird i guess but I put it between my legs and just sat on it because the pain was so bad and it actually worked too! It hurt other areas around there a little because it was so cold but the burning pain was gone and thats all that matterd to me.

So to the poster above that, I didnt realize that this evaril ( i think i spelled that wrong) is actually something to treat IC and not just a pain reliever? Is it expensive?

It just sounds like this has almost been a "silent disease", that affects many of us women ( and some men), and that it is not getting the recognition as a valid and chronic disease that it should. It seems like many people have expressed that their doctors and urologists have dismissed them as either over reacting, attention-seeking, or that this IC doesnt even exist. Maybe they should step back or even come here and see for themselves how many people around the country and world suffer from this and that it is a real problem. I have not really asked the age of anyone here but are there any people who are around my age (early twenties) who are experiencing this as well?

I forgot to mention earlier that since I was a child, I have also experienced chronic irritation where I pee. My first memories of this were when I would go to public swimming pools that had chlorine. I would start to burn within 30 minutes of being in the pool, and upon leaving the pool, I would experience excruciating pain during urination, and I couldnt even sit still on a chair because it would hurt for the rest of the day. It pretty much made me fear any kind of pool with chlorine in it to this day. After i stayed away from the pools, It didnt reoccur until two years ago with all those infections. I think my bladder might be scarred or inflammed permanently from having too many of them :hmm:

I think I am going to ask my mom if i can get on her insurance. Someone sent me a PM telling me that in some cases, people who are under the age of 25 and are full time students like me can still be coverd under their parents insurance policy. Im not sure if that is true or not but it is worth a try :)

[libertysrose]

Angela82 ,

:welcome: i am glad you found this site, there are a lot of wonderful supportive people on here, I am also newly diagnosed with IC and it is quite overwhelming it sounds to me like you me have it. there is a section where you can find doctors in your area that know about IC and also a section on help with low income patients. I know what its like going to doctors and the er and no one giving you a second thought and pretty much telling you its all in your head i went through that for 13 years .. i have also been there with not having insurance it is hard but keep pushing and its not all in your head .
someone will listen if you keep pushing. Dont give up and good luck to you.
keep us posted on you progress in trying to get diagnosed. :grouphug:

[~*~Christine~*~]

I think I am going to ask my mom if i can get on her insurance. Someone sent me a PM telling me that in some cases, people who are under the age of 25 and are full time students like me can still be coverd under their parents insurance policy. Im not sure if that is true or not but it is worth a try :)
I'm not sure how it works outside of Canada but, here, that's true.
Even if you're not a student and/or over the age of 25 you can be covered by disability. This is done by signing to have your parent be your legal care guardian, since if you're unable to take care of yourself, they can and will be assisted by the government for that reason with health care and basic needs costs provided. Though you need your doctor to fill out some forms for proof plus info on the medications, and such, you require to be covered.
I'm under this disability with my mom as my legal care guardian, and I'm 22 and haven’t been a student since 2003.

You do have to be checked/interviewed by someone from the disability department every 2 years, or so, if you continue to require their assistance.

[teelag]

When I was in college, I was able to be on my dad's insurance up to the age of 25 as long as I was going to school FT...so I would definitely check that out with your mom.

Just to let you know, many urologists will diagnose you with IC without having to do a cysto/hydro. Mine diagnosed me by symptoms alone, since we were able to rule out all the other diagnoses. He immediately started me on Elmiron, Elavil, and Urised from the start.

Do the diet hard core, because it takes a couple of weeks sometimes to see a difference. I felt a little better as soon as I cut out coffee, maybe you will feel better since you got rid of the MSG.

Without insurance I know that Elmiron can be $$$, but Elavil is pretty cheap because you can get a generic. It has helped a fair amount with my pain. Maybe call around to a few pharmacies (like Walmart) and see who has the best price. I use to get my BCP from Walmart because my insurance wouldn't cover it and they were the cheapest.

I know sometimes you can get medication from the maker free or at a reduced price if you can't afford it...I am sure someone on here can tell you if that is possible for Elmiron.

I hope you feel better soon, and know that you are not alone with this.

[kuntrygurl78]

You were asking if anyone here is in their twenties on this board. Im 27 and was diagnosed March 24. Like you, I have lots of questions about this whole IC thng. Read these boards. They have so much info. Also feel free to use them to vent. I was having a horrible day Friday (the depression of having this hit). I got on the board and vented and felt 100 times better. What's nice about this group of people is that you can laugh and cry with them and they will support you. Im also finding diet tips and med tips on here everyday. On this thread I learned that Tylenol is good; Advil is bad. If you have any questions feel free to email or PM me. My email address is in my profile. Good luck!

[amber sevy]

I just wanted to tell you that I get my elmiron for free threw the drud company. you do this by talking to your doctors office and they have the paperwork.

[Dawn1216]

Hi! I am newly diagnosed with IC. I was first diagnosed with Ulcerative Colitis when I was 20 and on Friday I was diagnosed with IC. I feel too young to have health problems, but know it could be a lot worse. I feel kind of overwhelmed by the diet but am going to try to do without soda and chocolate, two of my favorites. I figure that is the biggest deal and then at the same time stick to the suggested foods. It seems so hard to check everything for each preservative or ingredient. Don't know how I will manage that yet, but it will be a learning curve. I am already on a restrictive diet for UC and it is kind of hard to be on another one. I am glad to see I am not the only twenty-something. :)