Interstital Cystitis

I’ve decided to gather all the info I can about Interstitial Cystitis. Since I have noticed that I have many people searching my blog on the subject. I will add things as I find them. I guess I will start by telling you how I got it… I have no idea…lol. Actually I do. I was told by my doctor at that time, that it was due to stress. I was going through a very, and I mean a very stressful time back in 1997. Then in the summer of that year it started. I honestly didnt know what it was. I thought that it might be a bladder injection, nope. I thought it was many different things and I was wrong and the doctor was wrong too.

I switched to a new doctor and then another and one more after that. Nobody seemed to know what was wrong with me. I then started to research my symptoms online. After about 3 days I figured out more or less, what was wrong with me. Now I just had to find a doctor that was willing to listen. Most doctors dont want you to come in and tell them what you know is wrong with you. It took another 2 years before I finally found a good doctor that sent me to see a Urologist. In those first 2 years I found out about Uristat that I could buy in the USA at drug stores and also dye-free Benadryl. Those 2 things helped me get through that time.

Lets shorten this story. Basically I ended up being right and the doctors I have now help me by giving me my pills no questions asked. Which is great, cause I hated having to explain every single time why I needed the pills. I had tried a bunch of different ones till I found the right one that works for me. As I have said before in other posts, I have my green pills(hydroxyzine) I take every night before bed, and my red pills(pyridium also known as phenazopyridine is not available now) which I take when I get a flare-up. The red pills are similar to Uristat but instead are prescription. It saves me money since our medical plan covers 80% of the cost. The green pills are also prescription.

I also want to say that about 2 years ago I had to go see an allergist ( a REAL doctor,not a naturapathic doctor) since I was having some sinus problems that weren’t going away. He did a bunch of allergy tests and figured out what all I was allergic to, but I also had tests done on food allergies. He then put me on a diet for 3 months where I had to cut out all the foods I was allergic to. It wasn’t too easy the first week, but I survived. After a while I noticed a difference. I didn’t have any flare-ups in those 3 months and that continued for another 4 months after that. Joy!   So I have a few foods that I totally avoid when I start to get flare-ups daily. I would suggest getting the test done. It was worth it for me. My biggest one is “yeast” and you will be amazed what foods have yeast.

So, What exactly is IC? Its, painful!! OK, its more than that. Its a bladder disease. It varies with each person. I think I am one of the lucky few that has some kind of control of it. With the pills and watching what I eat and keeping my stress level very low, I have a flare-up about once a month. Sometimes I wont get a flare-up for a few months. Most flare-ups last 1 to 10 days. Anyways, what it feels like… You feel the need to urinate every few minutes. Even after you have gone, you still feel like you didnt get it all out. It can be very painful while urinating. A burning sensation in the urethra. This is where the red pills help. They numb the pain. It takes about 20 minutes after you take the pill to start working. You might even have to take 2 at first if the pain is really intense.

What are the symptoms?

  • Burning while urinating
  • Urge to urinate frequently
  • Bladder spasms
  • Back pain
  • Itching

Those are the the most common symptoms. If you have any of these, you should talk to your doctor about IC. Now a list of foods that could start a flare-up.

Flare-up foods – These are just the top offenders for me.

  • Alcohol – beer and wine mainly (I can drink lite beer but one 2-3 bottles)
  • Caffeine – coffee and sodas. (I dont seem to have a problem as long as I stick to diet soda.)
  • Cranberry Juice – This can be very bad for most IC sufferers (I cant drink it)
  • Vinegar – Stay away from this. (Apple cider vinegar is the worst)
  • Aged Cheeses – Some times a small piece is ok.
  • Citrus Fruits- pineapples, oranges, grapefruits and apples.
  • Bananas – These are very bad for me.
  • Chocolate- I can handle dark chocolate 70% and higher
  • Aspartame – I tried to stay away from this one. I use Splenda whenever possible.
  • MSG(mono sodium glutamate) – This hurts! (It will start a flare-up with in 20 minutes for me.)
  • Tobacco – I quit smoking in 2001

For a bigger list of foods check here. Each person is different when it comes to foods. I know my list and after so many years I know it by memory.

to be continued….

Alright next is a list of sites you can go and get a ton of information.

Those are the best ones. There are many more if you do a search on google.com

more to come….

Clothing

I have found that I no longer can wear certain clothes. You may also have this problem. Here is a list of some things you can try and see if it helps.

  • Wear only cotton panties
  • no tight jeans
  • Breathable pants, shorts.etc
  • No pantyhose

I find that if I wear anything that makes me sweat, it will start a flare-up. In the summer its best to wear skirts and dresses or shorts that are a size too big so that you get air flow “down there”. In the winter months jeans are ok, but dont wear ones that are so tight that you cant bend or sit or breath.

When I buy jeans, if the waist is too tight,it feels like my bladder is getting pushed down. So I always try them on and sit down and see if there is any pressure. This rule goes for any type of pants. Any type of pressure on the bladder can be uncomfortable, as you probably already know.

Next…

Hygiene

Its ok to have a bath. When I get a bad flare-up I have a warm bath. It lets me relax my bladder muscles, and if you pee in the bath its ok too. Trust me, it actually feels better. There are few rules to bathing. NO perfumed bath products. If you want to use them i have tried many and have only found one brand that I can use. I use the bath bombs from “LUSH”. There are few that are a bit “spicy” and I only use those when I am NOT in a flare-up. Here is a list of the mild ones that I can use during a flare-up.

  • AvoBath
  • ButterBall
  • HoneyBee
  • Waving Not Drowning

When not in a flare-up, I can use any of them. Try the “happy Pill” Its my favorite. 🙂   There are also a ton of bath wash lotions out there. Lush as some good ones. If you just want to use ones from a regular store, I have tried just about all of them…lol. So far I have found only 2 that I am able to use. Ivory and Olay. Not Ivory soap bars, they make my skin itchy and feel like I could rip my female bits off and throw them out the window. Ivory body wash is the one I am using currently and so far its been 2 months and no problems. Olay is good too. You just need to try the different ones to see which one you like.

UPDATE- I have switched my body wash to Aveeno. Seems to be the only one I am tolerating the past 6 months.

UPDATE- Been using only Dove bar soap for the last year.

You can use baking soda too. It does help relieve some pain. It wont make your flare-up worse.

If you use Douche, STOP! It makes things worse. Never ever use them. If you feel “unclean” use plain old water.

Perfumes…I love them. sigh… I just cant wear them all. It took a few years to find a few that I can wear. You have to experiment and find out which ones work for you. If you try one and you get any type of reaction then its not for you. I have figured out that when I smell a perfume and it makes my nose itchy and I feel like sneezing, its not worth trying. I try to avoid walking through the perfume areas of department stores. All those scents can actually cause a flare-up within an hour for me. I have found that Lacoste Perfumes are ok for me.

I have recently started making my own bath bombs. This is worth trying. Now I know exactly what I am getting. No extra ingredients. Which means no need to go to LUSH anymore.

Lubricants

I wanted to touch on this one because I know that some of us have dryness when we take medications for IC. Well, I have tried many of them. I have found that any of the products that have Glycerin in them cause me much pain. So I now only use Silicone lube. So far the best one I have tried is ID Millennium. Dont bother with any flavored or scented lubes.

UPDATE- There are some by Sliquid that are paraben free and Glycerin free that I have tried and have had no reaction to.

Cosmetics

Speaking from experience, I have tried many brands of makeup and lotions. Over time I have found what works and what doesn’t. I do know that if a brand has fragrance listed as one of the first 5 ingredients I can’t use it. I stay away from most drug store brands. If I get any type of skin irritation, I end up getting a flareup. I can tell within 2 hours of applying if it will cause a problem. So it’s always best to try a sample before you buy. Once you find a product that works for you, stick with it.

I have been using Physician’s Formula for about 3 years now and have absolutely no reaction to it! (yippee!) I only buy the talc free, fragrance free Mineral makeup.

UPDATE- I have changed my makeup again. Now using E.L.F. Hard Candy and Physicians Formula. These are the 3 that work for me.

Been without a flare up for 3 years!! I did a have a day here and there that I needed to take extra meds. But otherwise I’m keeping it in control.

 

To be continued…..

18 thoughts on “Interstital Cystitis

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  1. Pingback: Wheat Free
  2. Thank you for this. I have severe IC, I’m 32, have two kids, and a busy life. As I write this, I’m curled up in pain in my third week of a flare debating going to the doctor (again) to get pain control. My urogynecologist is unreachable and I dont see her til July. If anyone reading this ever wants to talk or trade tips, email me: Jenn.mullen@gmail.com

  3. my mother and my sister both have IC. Any highly acidic foods/beverages are no-nos, and you have to wear white-crotched cotton briefs that aren’t too snug (going panty shopping with my mom is quite the scavenger hunt). There are quite a few cookbooks with some pretty tasty recipes for people with IC. Also, no leather seats. All of our family vehicles have towels or blankets in them just in case.

  4. Casey, I know I have to wear cotton undies too.At least now cotton undies look better. Before they were all granny panties…lol. I have been on a low carb eating plan and it really has helped control my IC.

  5. I was diagnosed with a very severe case of IC 4 years ago. I just wanted to share a few things I have found that help cope with IC flare-ups. Parsley tea is great & also a good detox tea for liver & kidney health. You have to be careful with baking soda. I only buy organic/pure baking soda, as the ones you typically find have large amounts of aluminum. I also make moist compresses with Young Living Essential Oils. The two I like the best are Thieves & Oregano. They are both “hot” oils, so you need to mix equal parts with a carrier oil. I usually use olive oil. Wet a sm. towel & stick it in the microwave till it is steamy & hot. Smear essential oil (mixed with carrier oil) over the bladder & place warm/hot towel over it. Then place a dry towel over that one. Leave it on as long as possible. Oils will probably still sting some even tho they are mixed w/a carrier oil, but it won’t hurt you & doesn’t last long. A hot detox bath is great, too. Here’s the recipe:

    4 cups organic baking soda
    4 cups epson salts
    4 cups peroxide
    Make water as hot as you can stand it & soak for about 45 mins.

    Hope all this helps. It is a miserable condition, but know that you are not alone!

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