16 Lessons I’ve Learned In 26 Years of Living With Interstitial Cystitis
Updated: Aug 11, 2022
I've had Interstitial Cystitis (IC) my entire life. I turned 26 this week, so that means 26 years of living with this chronic condition. I thought it would be helpful to share a few things I've learned on my journey to solving my IC puzzle. Here's 16 things I've learned over the years (26 was too many LOL):
IC is not a death sentence. There is light at the end of the tunnel, but it will take time to solve your IC puzzle. Be patient, and remain optimistic.
Find support right away. Connecting with others going through the same thing as you and having people out there to support you is so important on this journey. Check out Facebook support groups, but keep in mind that the vibe in these groups is not always optimistic. Observe what works for other people and take a break if it starts to stress you out.
Educate yourself. Since IC does not have a known cause/cure, treatment is usually like blindly throwing darts and trying to hit the bullseye. Sometimes you need to be your own advocate, and that may mean educating yourself to know what to ask for. A lot of docs out there understand that we do a ton of research on our own and will honor your request if they believe it is safe and may provide a benefit.
Tell your loved ones. Keeping them in the dark will create barriers over time, and you need all of the support you can get. They won’t be able to support you unless they know what is going on in your body. Explain that even though you may not look sick, you have an illness that is causing you a lot of pain and discomfort. I'd also recommend explaining that there is no known cure for IC, so this condition is not going to just go away. Check out these templates that I created to share with loved ones.
Investigate your root cause. As we don’t have a known cause, there are many theories out there. Check out Payne’s 5 IC Subtypes. This may help give you an idea of what direction to take in your treatment. Be aware that many providers do not know about or support the use of the subtypes.
Start with the least invasive treatment method. I made the mistake of taking meds, starting invasive procedures, and having surgery right away because I thought they would be a "quick fix". It wasn’t until I managed stress and made diet changes that I started to see improvements. Why have someone poking around your pelvic area if you don’t need to? Don't make the same mistakes that I did. Start with diet modifications and stress management. Here's a link to the recommended lines of treatment.
Know that it may take time to find a good doc. Not every urologist, urogynecologist, or other medical provider will be up-to-date on IC research. If you don’t vibe with a doc, break up with them and find a new one. You may even need to travel a bit to find a good provider in your state. Find an IC provider here.
Manage your stress. DO NOT PANIC - this will put your body in fight or flight, which will only make things worse. Stress = Inflammation = pain and urgency. Click here to read more about stress and IC. I encourage you to find a mental health professional to learn coping techniques if you have the means. Explore various stress management techniques like meditation or progressive muscle relaxation.
Phenazopyridine and Prelief are life savers. When taken with a meal or beverage, Prelief can neutralize the acid content in that item. Many IC sufferers are able to eat common trigger foods like tomatoes and coffee if taken with Prelief. Phenazopyridine (brand names Azo, Pyridium) are great if you feel a flare coming on. Keep in mind that Prelief should not be taken if you have high blood pressure, and taking Phenazopyridine should be discussed with your doctor. Always consult your doctor before taking a new supplement/medication.
Do not attempt to wear tight clothing. It is never worth it. Invest in clothes that are comfy. This does not mean you can’t look cute - try dresses, rompers, flowy shorts, and mom jeans! Athletic brands are even starting to sell loose, comfortable dress pants that are appropriate for work. Check out @thepelvicwarrior on Instagram for some comfortable outfit ideas.
Commit 3 months of your time to a strict elimination diet. It may sound like a big commitment, but it is the most efficient way to identify what your body/bladder is sensitive to. The IC diet is not meant to be a long-term solution, it is meant to guide you in identifying your triggers. Click here for my FREE IC Master Class.
Don’t fall victim of a fad diet. You may see people posting about how X diet helped “cure” their IC. Most of these diets are extremely restrictive and not good for your body long term. You do not need to cut out whole food groups to feel better (unless you have an allergy). Consult a doctor or a Registered Dietitian (such as yours truly) for research-based guidance.
You won’t always be sensitive to certain foods/beverages. I’ve witnessed many people who used to be sensitive to a food or beverage but can now consume the item. Your bladder can calm and heal itself over time. Don’t think about foods/beverages like you can never have them again. Stay optimistic.
Always carry water with you. Not drinking enough water is a common trigger for IC sufferers. If I’m out and about, I keep a water bottle in my purse. When I’m at home or at work, I have a larger bottle with a straw (I bought mine at Starbucks). Aim for at least 64 oz water per day. Beware of flavored or sugar-free beverages that may contain problematic ingredients like artificial sweeteners.
Practice having gratitude. The mind can be powerful. Staying positive and reminding yourself what you are grateful for can keep you in a good place mentally. Here's some information to get you started on practicing gratitude.
Move your body in any way you can. Physical activity releases endorphins, or the feel good hormone. Try going for a walk, yoga, stretching, or anything you enjoy that doesn’t cause you pain. Here's a few other ideas.
BONUS TIP: Don't compare yourself to other people with IC. Comparing yourself to someone else's success can make you feel like a failure. Every single person with IC is different and we all have our own unique puzzle to solve in order to feel better. What works for one person may not work for the rest of us. Stay in your own lane and focus on what works for your body.
I hope these tips are helpful for you on your IC journey. While I am only 26, I've grown up with this illness and have made my fair share of mistakes - learn from my experience. Good luck to you in solving your IC puzzle!
If you need guidance in solving your IC puzzle, check out my Road To Remission program.