Today marks the year anniversary of when I was diagnosed with IC. A year ago, I was hospitalized for what I thought was a UTI that wouldn’t go away only to find I have no infection and be released. I was then referred to a Urogynecologist where I was diagnosed with Interstitial Cystitis.
Reflecting on this past year, I started writing down things that I learned along the way. So here’s my list of 10 things I wish I knew when I was first diagnosed.
You’re observations of your body are more valuable than what your doctor has or will tell you. You may not find an experienced doctor to treat you and that’s okay. We’re still learning about interstitial cystitis and unfortunately because of that, not many doctors treat it. But a lot of IC, is figuring it out for yourself so it’s not the end of the world if you can’t find a doctor. There are doctors and nutritionist who do remote visits so if you really want to find someone, don’t limit yourself to in person consultations.
Do constant research. Specifically, make a list of all possible IC treatments and just keep going down the list one by one. Somethings going to give you some relief but everyone’s different so one treatment that works for me, may not work for you. There’s treatments from bladder installations, prescription medicine, supplements, physical therapy, acupuncture etc. so anything you can find, add to the list. Research the different IC phenotypes. Trying to identify and understand your root cause is what you need to go in remission.
Find a support group online. I recommend finding big and small group. I like the Facebook group The Interstitial Cystitis IC/PBS Support Group as my big group. However with large groups, you don’t always get the personal attention and bonding you may need or want. I made a small group message on Instagram with about 15 other young women and we all talk to each other on a daily basis and I can’t imagine where I would be without them. I’ve never met any of them I’m person but I feel like they are my true friends and I appreciate their support more than I can ever say. I felt so alone for so long dealing with this and it makes a world of difference when you have a support group that understands what you’re going through. I encourage you to reach out to others like you even if it seems awkward at first.
Keep a food log. Identifying your triggers can be hard in the beginning but the best way to do it is to keep a log of everything you eat. From my weightlifting days, I’ve always used My Fitness Pal in the App Store and I recommend using that or something similar to track what you eat so you can look back and see everything you’ve had incase a mysterious flare comes out of no where.
Drink a lot of water. I mean A LOT of water. The more the merrier. I usually consume about .75-1 gallon of water a day and the more hydrated I am, the less it bothers my bladder. If you ever noticed that it hurts a bit more first thing in the morning, it’s usually bc you’re urine is more concentrated bc you haven’t drank any fluids in 7+ hours. Try to make a water goal for yourself and slowly build up over time to aim for that 1 gallon mark.
Do some sort of stress reducing activity on a regular basis (multiple times a week). There’s a large connection between stress and those with IC. I’m not saying it’s all in your head but it can definitely worsen your symptoms and sometimes even trigger a flare. When you’re stressed, you subconsciously clench more muscles and that includes your pelvic floor which puts more pressure on your bladder and therefore worsening your symptoms. I encourage you to try yoga or meditation. Maybe get a massage or see an acupuncturist and make time for it every week.
Live a little. This ones hard. We get so caught up in the diet and all of the restrictions we live by but you have to cut loose sometimes. If that means cheating on the diet, just do it. Eat that piece of cake, enjoy yourself. (But be ready to address the symptoms as soon as the appear.)
It’s okay to feel discouraged sometimes and mourn your previous self. Your life has probably dramatically changed and that’s hard to deal with. You’re a different person now. You may even go through all of the stages of grief and that’s normal too. I still go through phases where sometimes i think “I’m fine, I’m used to this way of life.” But sometimes I’m not. Sometimes it infuriates me that I can’t go out to eat with my friends and live the way they do and I’m so envious of them. Remember that your feelings are valid, no matter what they are.
Try to stay positive. This seems ironic being listed after number 8 but it’s true. You can feel discouraged and have bad days or weeks, but overall, work on a positive attitude. You can’t control this condition, but you can control how it affects you mentally. Don’t let it take anything else from you. I try to make time to do activities that increase my mood like yoga, being outside in the sun, tending to my plants. Things that truly bring you joy, and not just sitting on the couch and watching Netflix. I’ve done that too and sometimes we need that but also know the balance.
And lastly, remember that it’s journey. There is no one size fits all cure for IC. Remember that list of treatments I mentioned above? One treatment may work for some and not for others. So just keep pushing on to the next. You will find some relief. There will be ups and downs. Some weeks you’ll feel amazing, better than you have in so long, and sometimes you’ll feel really shitty. Trust that this is all a part of the healing journey.
if you have any questions, you can message me on Instagram. I know this sucks, but it gets better and there are people that can help you.
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