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My aunt has this, it's like having a urinary tract infection without the infection. So you have similar symptioms, but you don't have the infection. It's just constant inflammation that causes the pain and causes you to have to pee a lot. I think it took her a while to get any idea that is it what it is, because there's no way to test for it... it's just something that doctors assume you have if they can't find any infection or other cause for it.
@mcnetn3: Thanks for sharing. That's what I've found out through my own research. What frustrates me is that both doctors dismissed this when I brought it up as a possibility and said "that's not a real disease, anything they can't figure out they put under that umbrella". One told me to just forget about it and concentrate on my wedding (!) and the other prescribed me the antibiotic that I already had told him doesn't work on me.
i hope you don't actually have this. i have a friend who has it, and she has been struggling for years. she has tried so many different treatments, medications, diets, and alternative treatments and has never found relief. google the name and you can find some more message board type support groups -- i know she uses those a lot. maybe you'll have better luck than her, but she is pretty miserable with it. sorry, i wish i had better news for you :(
I do think your doctors are right to keep trying to treat your symptoms to hopefully get to a root cause of it.
I had a recurring UTI for a while and it turned out it was some kind of fungal infection that antibiotics don't work on (TMI), so I think it's good that your doctors want to keep trying to ID an actual cause for the problem. If it is Intersticial Cystitis, then there isn't really a treatment for it.
I actually found out I had this years ago and the only way the doctor could tell for sure was to have me do a cystoscopy. This was after I had been to every possible doctor and finally my urologist recommended this to me. I would NEVER do this again though (they actually suggest doing this multiple times to help treat your symptoms) because it was so painful afterwords. I was literally crying while peeing because the pain was so awful. But if you want to know for sure, this may be the route. From this procedure I found out that my maximum bladder capacity is less than 1/3 of the average persons. It sucks! My soon to be mother in law has this as well (Weird coincidence). And she had to undergo this to diagnose herself. Good luck, I hope you find a good doctor who will listen to you!
Cystoscopy. Doctors sometimes use this test to rule out other causes of bladder pain. Cystoscopy involves an examination of your bladder through a thin tube with a tiny camera (cystoscope) inserted through the urethra. Cystoscopy allows your doctor to see the lining of your bladder. In conjunction with cystocopy, your doctor may instill a liquid into your bladder to help measure your bladder capacity. This procedure, called cystodistension, is generally performed with anesthetics to reduce discomfort.
@Meliss, I wanted to post yesterday at work but ran out time. I had IC 20 years ago (I know, dating myself-I was 23) and I was CURED completely. Like Brooks, I had the cytoscopy and it totally sucked-hurt so bad after. BUT I had a really good urologist and I had to do the special diet and then I went for treatments for six weeks. It sounds kind of strange and maybe it was even experimental at the time, but I would go the doctor's office once a week and he would fill my bladder with a solution (I know, TMI) and I would wait about 15 minutes and then pee it out (ditto TMI). The idea was to force the bladder to generate a new lining, like a new skin. It was very uncomfortable but it worked and I haven't had one issue with IC since then. In fact, I haven't even had a regular UTI since then either, come to think of it.
Anyway, I literally have felt your pain. Google a bit or ask some doctors about that kind of treatment. I can't imagine any kind of oral medication would help, especially since my doctor had explained to me that basically, the lining of the bladder is inflamed constantly, which is what causes the pain. Oh, and I was able to go off the special diet too.
Good luck and PM me if you want :)
All PP's, thank you so much for taking the time respond and sharing your experiences.
@mcnetn3: I really hope I don't have have IC as well as it sounds like a dehabilitating condition. Also pretty terrible for someone who's not used to any kind of dieting and loves her food. But it's also frustrating not knowing what's wrong with me. I'd be sooo happy if they did some tests and found out I have something completely different that will go away by taking some pills.
@I_Heart_Books: The second doctor I saw did do a cystoscopy, however he did a quick one in his office with no anesthesia and it was one of the most painful things I went through. I left his office almost crying and limping, and he acted like it shouldn't have hurt at all. He did say I had a small bladder. However this alone doesn't explain to me why I'm perfectly normal for weeks at a time, and once the "problem" strikes I'm peeing twice as much, waking up multiple times at night, and in constant pain? Also no treatment plan was offered to me. I know cystoscopies can be done under anesthesia along with cystodistention, and that this can be used as diagnostic as well as treatment for IC. I just need to find a doctor who will do this. Don't know why it's been so difficult :( I would go through that pain again to get some answers.
@PutABirdOnIt: Thank you so much, your story is very encouraging! It's great that you found a doctor that was knowledgable about IC and willing to help you 20 years ago, and baffling to me some doctors still maintain the attitude today that this is not a real disease. I've found about many clinical studies about it for people with similar symptoms to mine, but you're right that there is still no proven oral medication that cures it. Still, it makes me hopeful that this can be diagnosed AND treated, I think you're the first person I've heard of where it just completely went away. I wish you were in LA and could recommend me your doctor :)
Well, guess what? It's your lucky day! I happen to be from LA and only been in Maine for the last 4 years. My doctors' name was Fred Kuyt (I think that's how it was spelled) and I'm not sure he's in practice in anymore but Google him. He used to practice in Century City or thereabouts. But if not, I have some great BH doctors who might know a good urologist in So Cal, so PM me and I'll give you some names. All my doctors from my gyn to my derm are amazing and I'm glad to share:)
Seriously, I know how incredibly lucky I am that my treatment worked and if I can help anyone else, I'm happy to do so.
@PutABirdOnIt: Thank you so so much!!! I looked him up and his office is in the same building as my dentist, unbelievable. If for some reason I can't get an appt I'll pm you for other names. You're a life saver, you have no idea how long I've been asking around for doctor recommendations. This is why I love Weddingbee!
Oh. My. God. That is totally a sign! I'm SO glad he's still in practice. Wow. That is just so awesome. I'm giddy for you. lol I hope that particular treatment is still in use and if not maybe they have something even better. Good luck and again, I'm so happy you found him :)
I was just diagnosed with IC, but my uro didn't do a cystoscopy. But the problem is my dad (who is a doctor) thinks I have endometriosis and wants me to get a cystoscopy to make sure. My the uro told me they weren't 100% accurate, so I don't know what to do.
It is incredibly scary thing to be diagnosed with, and its hard to convey that to people. A lot of people are like, "oh well, you pee a lot. so do pregnant women." It's hard to describe that your bladder hurts because well, most people don't feel their bladder unless they have to pee. It's hard to describe the fear you get if you aren't near a restroom. It's hard to describe what its like to give up tons of types of foods, and that sex (can) be painful and scary.
I'm trying to figure out what "cures" to try...I'm just taking pain medicine now and no treatments other than the diet.
PM me if you want. I probably won't be too much help...I was just diagnosed a month ago. But I don't know anyone who has had this, much less heard of it!
@jedeve: I'm sorry to hear. I just read your post in the "peeing" thread as well. Up to 12 times at night?? That sounds rough...I've never had to get up more than twice, and sometimes I have weeks to months where I eat and drink anything I want and have no symptoms at all. I wonder if there are degrees of this thing or if gets worse in time. Of course, I'm still holding onto hope that I may have something entirely different but whatever it is they may not be able to diagnose it.
Thanks for the support, I'm sure I'll talk to you more about it in the coming months.
@meliss and @jedeve-
I am so sorry to hear about what you both are going through. I can relate to everything you posted. I was diagnosed with IC about 10 years ago and been in remission on and off ever since. I've tried a variety of things - tons of different medications, bladder instillations, acupuncture, pelvic physical therapy, etc. Pelvic physical therapy helped a lot with painful intercourse. I have found what helps the bladder discomfort most is managing my stress (through yoga, meditation) and avoiding certain trigger foods (for me, MSG and hard alcohol) but nothing has been 100% reliable. Given all the work stress lately with the weak economy, my IC has been going through the roof the last few months so I am back to the drawing board. Please feel free to PM me if you want -- I have tried nearly 85% of possible treatments over the last decade. Wishing you both health!
So I saw the doctor and without doing any tests, he concluded I probably have IC based on my symptoms :( He said I have a mild case of it and put me on the diet, which was my biggest fear. I don't know that I can live without wine, spicy foods, tomato sauce and chocolate. And I don't know if it's the stress of the diagnosis or what, but I've been going through a really bad flare-up right now even though I've been avoiding the restricted foods. This really sux. He said to come back in 3-4 months if there's no improvement with the diet and then we can try the bladder instillations or the pill.
@sf_carrie: Sorry to hear about your case as well. Are you able to safely eat the other "bad" foods other than alcohol and MSG, or is it a hit or miss?
@meliss: So, you saw the doctor and he said he might do the bladder instillations? That's good news, despite the sucky diet. I hated that diet and as I recall, I couldn't even eat cheese, my favorite food after chocolate. But there was one kind of wine that I could safely drink (maybe a sauvignon blanc-check it out if you can).
I really hope he's going to be able to help you. Keep posting your progress and good luck :)
@Meliss-
Unfortunately, it's pretty hit or miss in terms of foods -- MSG and hard alcohol I know will set it off for sure. Sometimes I can eat tomatoes, cheese, etc no problem and other times, my bladder will go crazy. My doctor explained that it's usually the combination and amount of various foods that causes a flare-up, so it's extremely frustrating for most IC patients to figure out what they can and can not eat. One thing that helps me if I'm in a flare up is to drink some warm water with baking soda dissolved in it -- essentially makes the urine less acidic. Did your doctor talk to you at all about Prelief? I have heard some IC patients have good luck with that and are able to enjoy most foods.
Right now my biggest challenge is fatigue given my poor sleep (waking up very often to use the bathroom). Because we are TTC, I can't take Elmiron or most of the common IC meds nor sleep meds so I am focusing more on alternative medicine options. So far I haven't had much success with acupuncture but the physical therapy has been somewhat helpful. I will keep you posted and am crossing my fingers you start feeling better.
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Without going into details, I've been suffering from weird symptoms for over a year and I strongly suspect I have some form of this: http://www.ichelp.org/Page.aspx?pid=327 . I've been two different doctors but wasn't happy with either one of them. I have yet to receive any sort of diagnosis or treatment plan, or have comprehensive testing done for this. I am now looking for a third doctor who will actually take the time to listen to me, but don't know anyone and don't want to pick randomly again from my list of insurance providers. The stats claim 3-8 million women in the US have IC, but I have yet to meet anyone who suffers from any sort of urological condition :( If anyone is familiar with this, please feel free to post here or pm me, I am desperate for any kind of advice.