Disclaimer: I am not a medical professional. This blog contains merely information, not medical advice. I have only my personal experience and hope that it may be of use to you in some way. Please consult with your doctor before beginning any treatment plan. This post is in no way meant to diagnose or advise. I have zero medical training, aside from that one time I took swimming lessons and they taught us CPR.
Warning: This post may be a bit medically graphic for extremely squeamish audiences. We're talking about urine a lot and blood a very, very little.
Do you have Interstitial Cystitis? I do. Tell me if this story sounds familiar. You've had many UTIs. Some of them have been so bad you went to the emergency room, convinced something was terribly wrong, only for them to come tell you that you have a minor UTI. Then the urine culture comes back in a few days revealing no active bacteria cultures. The antibiotics they gave you seem to help, but only for a short time, if at all. The urge to pee is now your near-constant companion, AZO pills your best friend. You guzzle cranberry juice, but it doesn't help and sometimes seems to make things worse. You're exhausted physically and emotionally.
So you go to your doctor yet again and this time you get lucky; maybe they sent you to a urologist who recognized the symptoms of Interstitial Cystitis (IC) immediately, or perhaps your doctor remembered it as the last remaining diagnosis available to you as somebody who experiences chronic bladder pain. Either way, now you have a diagnosis. They may have explained the IC diet and the concept of an elimination diet to find your triggers. Maybe they didn't. Either way, you are ready to take charge of this malady and get back to being yourself.
Congratulations. Seriously. I'm glad you've finally gotten a diagnosis! You can start taking steps to take care of yourself.
Unfortunately, Interstitial Cystitis is a very base diagnosis of "Painful Bladder Syndrome" that is basically a case of "your bladder hurts and you might have a hard time controlling your bladder, but we can't find anything wrong, so we're going to treat the symptoms". Unfortunately, there isn't a whole lot of definitive research as to the causes of IC, mostly because we appear to have lumped several conditions with similar symptoms into one catch-all diagnosis. Some of us have a strong family background of autoimmune disorders and we always have some white blood cells in our urine with no sign of bacteria, so we're pretty sure it's an autoimmune disorder that's attacking our bladder. That's me.
For me, I was diagnosed about two years ago. I quickly figured out my trigger foods with the elimination diet and was able to do some other research to help me cope. Soon after, I became pregnant. I'm apparently one of the lucky women whose IC goes into remission during pregnancy. It stayed in remission while I nursed. It came back slowly after that, and only recently did I finally admit what I had been dreading: My IC had returned.
I figured out that I needed to make this post after posting about the return of my IC on my personal Facebook page. Imagine my surprise when I had multiple comments and messages in under an hour from friends who have the same condition! When I started telling people what works best for me, I realized that I was going to be telling them all the exact same thing, and it would be good to put it out here for all the other women (and some men) plagued by this phantom terror of a condition.
So, without further ado, I present to you: How I Handle My Interstitial Cystitis.
- Stay Away From Cranberry Juice/Pills
I know that everything you've ever read says that cranberry juice is the holy grail for treating chronic UTI symptoms. Unfortunately, though cranberry juice is great when you are trying to prevent a UTI, it's actually quite irritating to your bladder. And when your bladder lining is cracked and bleeding, anything that could irritate your bladder will make you have terrible pain. That's the main treatment for IC: Don't eat things that irritate your bladder. We'll have more on this later.
- Drink Water
No, seriously. Drink all the water you can handle, then drink some more. I know that the last thing you want to do right now is drink more fluids, but you need to. This is a high priority. Since we're trying to avoid irritating your already-sore bladder, it's best if you can dilute the urine in your bladder. The closer the contents in your bladder resemble water, the happier your bladder will be.
- Follow the Elimination Diet
If you haven't already, click through to the IC Elimination Diet and follow the instructions. Yes, it will take several weeks. Yes, you do need to do this step. It is very important. Go do it now. I will wait. This blog post will still be here when you're done.
For those of you who didn't bother reading that page and following the diet, the main bladder-irritating foods you'll need to avoid are citrus fruits, tomatoes, chocolate (yes, I know; this is the worst), coffee (or any caffeine), spicy foods, artificial sweeteners, carbonated beverages, and alcoholic beverages. This list is no substitute for following the elimination diet and discovering your worst trigger foods. It doesn't contain one of my main trigger foods, and chocolate doesn't bother my bladder (huzzah!), so you really, really should just follow the blasted diet.
It is really hard to follow the elimination diet. I know. And there are so many items that seem arbitrary! For instance, home-grown tomatoes are relatively safe, but not store-bought tomatoes. That's because even the "vine-ripened" tomatoes you see in stores didn't actually turn red on the vine (those ones just didn't need any chemical help to turn red after being picked) and they still contain the high acidity level of a green tomato. Home-grown tomatoes have a lower level of acidity because you (hopefully) let them turn a nice, ripe red before picking them.
But even though it's hard, you can treat yourself so, so much better once you know your trigger foods. For instance, my biggest trigger foods are onions and tomatoes. So I know that every time I eat something that might have onion powder (basically everything, it feels like) or tomatoes, I need to take the appropriate measures ahead of time to make sure I'm not hurting too badly later.
- Baking Soda Water
It's disgusting, yes. But acid hurts your bladder, and drinking one teaspoon (or however much you can handle until you build up a gag tolerance) of baking soda dissolved in a glass of water each night can go a very long way toward reducing your pain level. It's best to take at night so that the urine that remains in your bladder the longest will be the least acidic, and maybe your bladder can heal a little.
My urologist recommended this one. Prelief contains calcium and magnesium, which you may recognize as the ingredients in common antacids. You take two Prelief tablets with each meal, snack, or beverage, as needed. You can take more if your meal is going to be large or particularly acidic or contains your trigger foods. I've found Prelief to be pretty helpful to me, personally. I carry some in a smaller bottle in my purse so I have some on me at all times.
A 2014 study of women with Interstitial Cystitis showed *significant* results for the prevention of recurring UTIs. Only 14.6% of the women who took D-Mannose daily had a UTI over the course of the six month study. This compared to the 60.8% in the control group. That's an amazing decrease! UTIs are so much worse when you have Interstitial Cystitis. I don't have any personal experience with D-Mannose, since I only started taking it recently, but there's no arguing with that sort of result! As of this posting, the best deal I could find was on Amazon where you can get 180 500mg capsules for $10 with code 9HEZFKL8.
- Sexual Hygiene
If you're sexually active, you need to be very clean. You need to pee before and directly after sex to clear your urinary tract of any bacteria. I know, this can kill the mood. But so will several days of extra pain if you contract a UTI or even just irritate your bladder with extra irritants. You also need to be as clean as possible during.
- Remove Wet Clothing
After swimming or any other activity during which your clothes get wet, you need to change into dry clothes (particularly under clothing) as soon as possible. A warm, moist area is a breeding ground for bacteria. This is particularly an issue if you're taking your kids to the beach pool every day or if you're on a swimming team.
- Bladder Retraining
For most people with IC who also have a weak pelvic floor, kegels can actually make the issue worse. Even if you don't have urgent moments when you may in fact not make it to the bathroom in time, you could probably benefit from bladder retraining. Bladder retraining teaches you and your bladder to urinate on a set schedule, rather than whenever your bladder feels like it. This isn't something you want to undertake until your pain is under control. I have not personally done this, but I have met many in the IC community who swear by the process.
NSAIDS can be very helpful to manage the inflammation and pain that come hand in hand with IC. Just don't overuse them; overdosing on ibuprofen can give you ulcers. I learned that one the hard way while searching for my diagnosis, and that was NOT fun!
This one will be between you and your doctor. If he or she deems it necessary, they may prescribe you a lidocaine patch or ointment to apply topically when your pain is unbearable.
- Quit Smoking
Do I really need to enumerate all the ways that the corrosive particles in cigarettes will make their way to your bladder and irritate it? Don't smoke. Your bladder will thank me.
Many people have reported that yoga and gentle exercises (nothing high-impact that will jolt your bladder) help with the symptoms of IC. There are even specific yoga poses for IC.
- Aloe Vera
If you have a "porcelain" skin tone like me, you're already well aware of the benefits aloe vera has for your skin. But did you know you can take aloe vera as a supplement designed to coat your bladder? I currently take four pills daily of 10.000mg equivalent gels. I find that it does help. I have a friend with Interstitial Cystitis who prefers to drink aloe vera juice. She says that George's Aloe tastes like plain water (as opposed to the awful juices she's tried from other brands), and she finds it to be rather effective.
I would be remiss if I didn't at least mention this prescription drug. It does not have the greatest side effects (including possible hair loss), but if nothing else works for you, this one might. I haven't tried it yet (re: aforementioned side effects), but I know several people have good success with it. Don't take it with Warfarin.
- Glucosamine and Chondroitin Sulfate
I saved this one for last because I didn't want to engender false hope, particularly before you'd taken steps to mitigate your symptoms and the damage to your bladder. But there have been several studies recently that show it might be possible to heal your glucosaminoglycans (GAG) layer in your bladder. Interstitial Cystitis is characterized by a "leaky" GAG layer that exposes the urothelium to many toxic agents. This means that you may be able to cure your IC by taking Glucosamine and Chondroitin Sulfate. Now, it takes several months of taking these supplements *every day* while following the other suggestions listed here in order to truly begin to heal your GAG layer. There is no guarantee, of course, but you absolutely can try!
I haven't tried these yet, since I hadn't even heard of these studies before researching for this post. But I absolutely just ordered some (they come in one convenient supplement) despite the fact that I am currently not spending money on almost anything in order to break my shopping addiction. We've determined that my health is both time-sensitive and necessary.
I hope this post has been helpful for you! Have you successfully used something I haven't listed to treat your Interstitial Cystitis? Let me know in the comments!