I wrote about having interstitial cystitis nearly a year ago, and since then, I've become the master of my own urethra.
I had a flare a few weeks ago, my first in ages, and I was really happy with the way my self-treatment worked out. The best information I've found about IC has come from other patients, on forums, and I owe those people a big thank you for their tips and advice. The best way for me to be grateful is to pay it back, so I'm going to share my own experience for all the future anxious googlers with IC. Hello! I hope you find some helpful info here.
At the first twinges, I suspected it was the orange juice. I never have more than a two cups a day of any citrus, and I never have it more than three days a week, and that usually works for me, but I think I'd worn tight pants, or committed some other IC sin that in combination might have set me off. I remember the orange juice, though, because I had to cut myself off and jealously watched my boyfriend finish it over the next few days.
This happens less than once a month lately; I'll have a day of urethral pain, but once I take measures to be kind to my pelvis, it will usually clear up. This pain continued, however, so I had to investigate further. I upped my water intake, stopped wearing underwear, and only wore non-restrictive pants. To make sure I didn't actually have a urinary tract infection (UTI), I took a dose of D-Mannose. If it was a UTI, the D-Mannose would flush the offending particles out of the urethra and help the healing to begin, and the dose would not increase my pain. If it was interstitial cystitis, the pain would only get worse after taking the D-Mannose. The trouble is, with my IC, it can appear with a UTI, masking the advancement or decline of the infection itself. So, when my pain worsened, it only confirmed the presence of an IC attack, not necessarily the absence of a UTI.
I used to use cranberry pills in the same way, but find them to be too destructive to my urethra. The pain from a D-Mannose dose will last hours, but from cranberry it can last all day, or longer. I actually avoid cranberry juice and supplements now, and I suspect my overuse of them during my recurring UTI years contributed to my developing IC. (However this is just my own theory and there is no known cause for IC, though frequent UTIs and other pelvic disorders do seem to play a part in its development.)
The symptoms I experience during an interstitial cystitis flare are very much like what I experience during my urinary tract infections: burning like acid-fire during urination, with most of the pain centered on my urethral opening, and that pain can last for twenty minutes (forever?) after each urination, making the next troublesome symptom, the constant need to go and often only producing a few drops, even worse. As soon as my lady bits have calmed down after my last piss, I've got to go again. Torture, is what that is. Then there's the blood in the urine, a heaviness and pain in the bladder, the pelvic bloat, and sometimes even a low fever.
At this point I have the option to take pills specifically for urinary pain relief, we got them at our local pharmacy, Phenazopyridine Hydrochloride 95 mg (generic for Azo), which I'm pretty sure is the same thing as the prescription for pyridium I used to get for my UTIs. It works GREAT for that pain, but doesn't do a thing for the IC. This has been another indicator of having an IC flare instead of a UTI, historically, but I skipped it this time, because I was pretty sure it was the former and saw no need to waste the pills.
For pain relief, I can use a heating pad or ice packs, or I might drink several cups of water then take a hot shower and pee at will. I know, that sounds super-weird, but I think it helps psychologically, if nothing else. The water in the shower eases the pain quicker, and I feel like the more my IC flaring body pees, the faster the symptoms pass. Plus, when urination becomes unendurable, taking it from a 10 to an 8 can feel like the world's biggest relief. It's something.
The only thing that helps my IC pain quickly and significantly is a topical lidocaine my doctor prescribed me. Specifically it is a tube of Lidocaine Hydrochloride Jelly USP, 2%. After a painful pee, or when the burning and aching just won't fade, I slather a bit of that on my urethral opening and the relief is fast. It doesn't usually take the pain completely away, but it can bring it from a 10 to a 5 within moments, so again, it's something. However, I wouldn't want to have to rely on this method for long periods of time, since I have to reapply after every pee, which I estimate to be 20 times a day on a bad day. Honestly, it may be more, I've never counted because it's gets ridiculous and upsetting. But, the point is, who knows what all that lidocaine could do to my junk over time? I'm concerned, but so far it's my best option for pain relief.
So, the pain got worse from the D-Mannose, I suspected IC, and my next move was to switch to a way more alkaline diet, nothing but water to drink and very mildly spiced foods, limited refined sugars and flours, and absolutely NO acidic foods. I also took a teaspoon or more of baking soda in water each night, which actually can help with the pain, if I catch the flare early enough. As I changed my entire routine to ease my symptoms, I looked for any little thing that could be triggering the IC, and I was delighted to realize I'd recently decided to try liquid stevia in my tea. I was delighted because that meant I didn't have to give up my beloved tomatoes and peppers and hot sauce and vinegars, and I'd just have to limit the stevia. Which is actually a rather nice sweetener and I would recommend it to anyone looking for an alternative to sugar, unless they have IC, then I'd tell them to try it carefully.
BUT, I suspect the real problem might be the the alcohol in the liquid stevia. I was only using a few drops at a time, so it seems like an intense reaction to have, but whenever I can rally up the funds, I'm going to try again with a non-alcohol-based product and see if I have better results. I really like the stevia, I hope I can use it in other medium.
For me, prevention is really the key with IC, and I find I can get away with almost any bad behavior in the short term if I've been otherwise chaste. I consider myself very lucky that my IC is only as bad as it is, I know and have heard of women (do men even get IC? I have only ever seen women on the boards. Huh.) who can barely walk, who pee every fifteen minutes, 24 hours a day, who eat depressingly restricted diets that don't even always help, who can't leave their homes, ever, because the pain and other symptoms never recede. Sure, I had to give up alcohol and caffeine and will never wear skinny jeans (WOE IS ME), but I can still have OJ and even lemonade rarely, all the tomatoes I want, vinegar for everyone and sometimes I wish I had a pressing reason to give up sugar. I've had to make sacrifices, but I'm just grateful I've been able to keep what I have. Mushrooms, don't ever leave me.
So, the symptoms faded fast once I cut everything out, within 24 hours, and then I just added it all back in after two full days of no pain, minus the stevia. There have been no further twinges, and no more frequency in urination than usual. The flare has passed and there doesn't seem to be an underlying infection, so I'm pretty excited to not have to see a doctor.
When the flares fade, I'm not left symptom-free, unfortunately. I always get up several times a night to pee and I have urgency issues and full-on urinate in my pants at least once a year. My symptoms increase with every trigger I risk. Caffeine, alcohol back in the day, tight pants, sex, stress, and citrus can all increase my symptoms, and while I've cut some triggers out entirely, others are harder to avoid, (or I love them. Come here, tomatoes, let me show you my love.) and so I try to be mindful of my choices, and pay attention to my body's subtler signals, because she does tell me when I'm screwing up, if I'm willing to listen. And if I'm not, she'll start screaming at me via IC or migraine eventually, so it's really much better to pay attention to the whispers.