In the past week, I have had several people ask me for advice on dealing with Interstitial Cystitis. I took that as a sign that I really need to have a comprehensive post where I direct you to other articles on the topic, as well as discuss what I recommend, after having gone through the horror that accompanies the beginning of this disease, myself.
Please keep in mind that I am NOT A DOCTOR. I have tried many natural and traditional methods for healing my bladder, but it was not an absolute science as many of the modalities of healing I tried, I decided to try all at once. I knew that trying one thing at a time and evaluating the result would tell me more precisely what helped, but you try talking someone with nonstop fire in their pants into doing something rational. I was feeling like a trigger happy Trump, ready to make “my body great again” and just bomb the crap out of everything!
However, I do have some suggestions for you newbies that I figured would be best to finally put into a permanent-ish form. I decided that I would merge my own experience with the AUA (American Urological Association) guidelines listed on the IC Network. Please refer to this link, for the full AUA guidelines:
Before I continue, if you have IC, you are going to have to be your own advocate. There ARE doctors out there that will help you, but from what I have found, and what countless others have experienced, there are many well intentioned doctors that simply don’t know the most recent treatments and haven’t kept abreast of the most recent research. The IC Network does a wonderful job of presenting this research.
I do take more of a holistic view than they do, so my recommendations will focus more on whole body healing, as opposed to directed approaches on the bladder alone. The doctor that has helped me the most is one that never did any tests on my bladder, but rather on my entire body, to help figure out why this all happened in the first place and how to correct it. Regardless, you will find what works for you! Don’t give up just because the first three, five, or twenty things don’t work. Healing takes much more time than we like and more patience than we think we have. You’ve got it though. I believe in you! Now, read on!
1. Mental and Spiritual Health
I know I sound like a broken record, but some records should be broken. (I’m looking at you, Limp Bizkit). However, instead of going on about it here again, I will refer you back to this post.
The AUA agrees with me on this one, recommending self-help, meditation, guided imagery, muscle relaxation, and stress management. If you have a good amount of stress in your life, you are going to have a hard time getting a disease like IC in check. It’s time to get in touch with thy self, and do some serious mother loving removal of stress!
2. Get a Band-Aid
Look, I know medication is not the advice you are expecting from the girl who’s getting all crazy about chemical free living and holistic healing, but I believe they are necessary when you first are dealing with an autoimmune disease. They are going to help with the pain and I know that the medication I am on has helped me, however, I don’t think it’s going to fix my body.
They will aid in bringing temporary resolution of pain, but when you have IC or another autoimmune disease, you need to address the WHOLE body. It doesn’t like you for some reason. You need to figure out why or it could attack you again.
The medication I have found most helpful for IC is Elmiron. I am on a generic version through a pharmacy in California. It’s 800% cheaper, so check out how to get it ELMIRON LINK.
In addition to Elmiron (Pentosan Polysulfate), the AUA also recommends the following as second line treatments (meaning, try first line treatments first): Amitriptyline (aka Elavil®), Cimetidine (aka Tagamet), and Hydroxyzine (aka Vistaril, Atarax). Click here for a full description of each of these meds,
My first urologist prescribed Uribel to help with bladder spasms. It didn’t help me much at all. I was also hesitant to take it as I was breastfeeding at the time, but it may be worth discussing with your doctor. I know many who have found it helpful.
As far as over-the-counters go, I have had success with Cystex (back when I had IC but didn’t know it and had terrible bouts of pain that thankfully only lasted a couple days). The AUA recommends AZO and a series of other pain management solutions. Just be careful, friends, and always consult a doctor before you start combining all of these.
3. Start an Elimination Diet
I wrote an entire post on this topic as well. Check it out here. Once again, the AUA and I are in agreement. They however recommend the IC Diet. Check it out here.
Personally, the IC Diet was more difficult than the symptoms. It is necessary to do in the beginning, as our bladders just can’t handle much. They are tender little turds and they have to be treated with care. I will have you know, though, all of you on the IC Network that had me convinced I would never eat chocolate again…You. Were. WRONG!
Heal your body, and heal your bladder, and you can have the foods you love again. I’m not saying I go crazy. I am careful with citrus, wine, and limit my coffee, but I find that when I am eating healthy, whole foods that are supporting my whole body and healing my gut, I don’t have to worry so much about “acidic” foods. So yeah, first line defense, do the IC Diet. But then let yourself really heal and try an elimination diet. I promise you, it is so worth it!
4. Mind Your Fluids
You will quickly learn that most fluids are off limits on the IC Diet. That’s actually kind of fantastic. I know you hate me, but hang in there. Drink loads and loads and loads, and a few loads more of water. The more you drink, the less concentrated your urine and the less likely it is to irritate your bladder wall.
Marshmallow root tea is a natural option and has been found, by some, to soothe an angry bladder. Don’t buy the tea bags on Amazon. They won’t cut it. I recommend Mountain Rose Herbs. You can find it here . When you brew, add about a Tablespoon straight into hot water (don’t put it into a tea ball). Then put it in the refrigerator over night. When you get up in the morning, it should be gelatinous and thus, more likely to coat and soothe. Strain it and drink. Want to get crazy? Throw in some honey. Completely bladder friendly.
I tried many a tea. Included on the list were: licorice root (the actual root chopped up – not the tea bag), rooibos, and even some white teas. Anything with caffeine is not so great for the newly diagnosed bladder.
More than anything, stay away from coffee, wine, and orange juice! They are terrible on a tender bladder. You will likely be able to have them again, but just remember that this is a healing process. You are working for a balanced system and once it is, you can have some of your favorites again. Scout’s honor.
Just …don’t be an idiot and pound the coffee just because you’re angry and sad. Trust me, I get it. I lost it at Target over a Pumpkin Spice Latte cut out. Suddenly everyone with coffee made me ridiculously jealous, and I wanted to rip it out of their hands and throw it, or at the very least, tell them to appreciate it more than they were. Anyway, I know it’s hard, but do this for yourself. We are so much more than our caffeine addictions.
5. Fire and Ice
This one is different for everyone, but I found ice packs more soothing in the beginning than hot pads. I am friends with a group of ladies who all have IC on Facebook. We have been through a lot together, so I am using some of their experiences here as well. Many of them preferred hot pads. I couldn’t imagine putting heat on my already throbbing nether regions, but now I do. (I apologize for that visual). I rarely experience symptoms, but when I do, it has to do with pelvic floor issues, and heat now helps. In the beginning though, ice. All ice. I didn’t use anything fancy. Just a regular old ice pack.
For heat, I make my own rice bags. I add in lavender essential oil, which, by the way is amazing for relaxation, stress reduction, and helping the body chill the flip out. I’m diffusing some right now. My body always needs a little chilling action. You can also throw lavender into tea, diffuse it, or put directly on your body. I have many suggestions for essential oils that are amazing for supporting our bodies, but I am going to ask you to ask me about them. I don’t want anyone to get confused and assume I am saying they will heal IC. They won’t, but they will support your system, and, friend, it needs some serious SOS support.
There are a handful of supplements targeted for IC. I use most of them. However, I should mention that each of us is different, and it is very likely that you are in need of a vitamin or mineral that you are not currently making enough of naturally.
The most beneficial treatment for me thus far has been testosterone cream. I know it sounds weird, but I went from feeling ok sometimes, to feeling good most of the time when I leveled out my hormones. This was all done with an actual medical professional who was monitoring me through blood tests and we tried to boost through natural means as well, but apparently low testosterone is common in mommies with multiple children, who get very little sleep. It’s worth looking into. Additionally, I use an oil that helps to naturally level out hormones. Ask me about if if you want more information.
I also take Vitamin D (did you know the prevalence of disease is higher the further we go from the equator? We need vitamin D to fight disease!), Magnesium, CoQ10, Naturethroid, and a probiotic I will mention below.
As far as IC supplements go, I take Cystoprotek and Desert Harvest Aloe. If you are newly diagnosed, you can buy both of these on Amazon, or buy Cystoprotek from the ICNetwork shop here. Or, you can buy Desert Harvest Aloe, directly from their site, here. Cystoprotek contains ingredients that are helpful in rebuilding the bladder lining and reducing allergies and inflammation. I notice a difference when I don’t take it.
Desert Harvest Aloe is made specifically to remove the ingredients in aloe that cause intestinal discomfort and puts it in freeze dried form, which all helps it to reach the bladder better, creating a soothing effect.
And finally, my best buddy, Prelief. I take this before I eat or drink anything extremely acidic (i.e. coffee and wine). It contains Calcium and Posphorus, and helps break down anything overly acidic. I recommend taking this with every meal if you are newly diagnosed. You can find it on Amazon, here.
When I started seeing my Integrative Doc, part of the analyses run included a poop test. I pooped in a plastic hat, fished it out with a stick, mixed it with a magic poo potion and then wrapped it up and left it on my doorstep for the unsuspecting Fed Ex carrier. I wonder if mail carriers ever suppose they are handling other people’s shite?
The results came back that I had some major inflammation and my microbiome was lacking in several areas. You don’t care which, and I don’t care to sort through the paperwork to tell you, but it meant that I needed to take a probiotic that would replenish my gut with the right good guys. I also needed to eat more apples, of which I had been afraid to eat due to the IC diet (do you see what I mean when I say the IC diet is good up until a point when you are headed for whole body healing? I eat apples now. No pain.) This was also why I tried the Elimination Diet, in order to figure out which foods were causing inflammation.
Probiotics come in many forms. There are some interesting pieces of research that have found which indicate that the microbiome in those with IC is actually significantly different than those without it. Check out the exact strains here
Why does it matter if we have more or less strains present? What’s the big deal? Can’t you just eat yogurt? (A suggestion made by a former doctor of mine). According to the authors of The Elimination Diet,
“we have a rich and populated bacterial ecosystem within the gut, called the microbiome. This bacterial haven holds over 100 trillion microorganisms…In the healthy gut, most of the bacteria are commensal: that is they’re ready and willing to help you fend off pathogens and remove toxins as long as you keep the living conditions up to their standards…When we have a diverse and plentiful microbiome, the intestine cells keep the digestive process running smoothly and the immune system calm…It’s only when beneficial bacteria begin to disappear that the intestinal and immune cells will flare up into a state of alarm, increasing inflammation and digestive irritation.”
And honestly, there is so much more information than I can share in one blog post, but the gist of it is, if you don’t have enough of the good guys, you get inflammation and you get sick, not just in your gut, but all over your body. Many things can kill off the good guys, including antibiotics, stress, poor diets, toxins, antibacterial products, and low stomach acid.
If you have IC or any other autoimmune disorder, or allergies, or truly, any health issue, you need more probiotics. You can get them in supplement form, as mentioned. I also make my own probiotic drinks, like kombucha, and probiotic foods, which include any fermented foods (it is SO EASY to make your own fermented veggies!!). If you buy in the store, be sure it is organic. I find that making it is super simple and a heck of lot cheaper. Comment below if you’d like a post on how to ferment your own drinks and foods!
8. Find Yourself a Friend
Social support is monumentally important when fighting a chronic disease. Pain and alone is not a fun place to be and it makes healing much more difficult. In my manuscript, I have devoted a chapter to the impact of social support on healing, but for the blog version, you should know that simply telling someone that you love them and believe in them is enough to physically reduce pain. It’s pretty incredible.
Find yourself a support group, or hook up with a couple people from an online facebook group, but just be careful! Don’t fall into the forums where everyone is talking about how miserable they have been forever. You need partners in healing, not commiserators in the pain you are sure will never go away.
9. Stop Exposing Yourself
Ok, if you’re pulling down your pants in public, I would stop that too, but what I am talking about here is chemical exposure. Again, from The Elimination Diet,
“We currently have more than 83,000 chemicals being used in the United States, with well over 74 billion pounds (yes billion) being imported or produced in the United States every single day…Recent data show that these chemicals are, without a drought, contributing to our pandemic rise in disease.”
Want to hear more?
“inflammation is merely a response ore reaction of the immune cells to harmful invaders”
“chemicals will change the behavior of the immune system directly and indirectly.”
“Both triclosan and parabens can be absorbed through your skin where they can alter your hormone functions and your immune response to foods”
“children with elevated levels of triclosan and paragons in their urine had an increase of between 150 and 250 percent in food sensitivities”
And there is more, and more, and more.
Bottom line is that we are learning more every day about how chemicals disturb our immune system, our gut microbiome, and are actually causing disease.
I’m not ok risking that anymore. I have switched to all chemical free products in my home, for the sake of my own disease and the health of my family. None of this mattered to me until I saw the other side of health. If you have a disease, just try getting rid of the bad guys, and if you don’t, do it before you get sick!! If you want to hear more about my chemical free journey, check out this weirdo’s landing page.
10. Vagina Therapy
Got your attention? Thought so. Did you know there are therapists out there just for the sake of your vagina? There are. And they are awesome. Your pelvic floor contributes greatly to bladder function and fixing it can fix pain. This is yet another chapter in my book, but for now, I will say that if you have IC, it is quite likely that you also have pelvic floor issues (even if you haven’t had a baby). Ask google for your nearest Pelvic Floor Physical Therapist, and be prepared for a vibrator.
I should add that pelvic floor therapy is helpful for dudes too!! IC is not a women only disease and, guys, while I cannot say whether or not you will be getting a vibrator, I do know that pelvic floor support exists for you too (I know because I heard, and also because I had to sit awkwardly in my vagina therapist’s waiting room with a bunch of old ladies and occasionally a red faced young man.
11. Other Options
Thankfully I never had to have surgery, but that is a last last last resort for some. Interestingly, one of the ladies in my support group just shared a story of another IC sufferer whom had given up on healing and was going to have surgery. Her doctor told her to try to last another year and then come back. She improved her diet, excercised, and guesst what? Symptom free for six months. This is so possible, my friends! If you haven’t tried everything here first, please don’t jump to bladder surgery!
I did have bladder instillations done where they inserted meds into my bladder through a catheter. They didn’t help me at all, but apparently do for some people, so this could be an option for you. The AUA also recommends Hydrodistention, Hunner’s Ulcer Treatment, Neuromodulation, Botulinum Toxin, and Cyclosporine.
A little Farewell from the longest blog post ever
I hope all of this has given you reassurance that there are MANY MANY ways to managing your IC symptoms, and I believe, healing completely.
This is not the end of the road. It is just the beginning of your journey toward health. You can have it again. Honestly, I am always working at it, and although my bladder is much better, I still find that there are other places that I need to improve my health. It truly is a process that we must walk together, and I am hopeful that the physical and emotional pain I endured with IC will allow me to be someone who can bring you information that will bring you healing.
What questions have I not answered?
Do you have IC or another autoimmune disease? What treatments have worked for you?
Please leave your questions or comments below! I’d love to hear from you!
Segersten, A., & Malterre, T. (2015). the elimination diet: Discover the foods that are making you sick and tired and feel better fast. Grand Central Life and Style, Hachette Book Group, New York, NY.