Imagine having UTI-like symptoms such as frequent urination, pelvic pain, and urgency to urinate but then there’s no bacteria and antibiotics won’t make them go away.
These are just some of the ordeals patients with interstitial cystitis have to deal with.
What is interstitial cystitis?
Interstitial cystitis is a chronic health condition of an unknown cause that affects both sexes but is more common among women.
At present, there is still no cure for interstitial cystitis. Intervention is focused on alleviating the symptoms. This includes physical therapy to ease the pain, oral medications for pain and urination, and nerve stimulation.
Some patients benefit from avoiding foods that trigger their symptoms such as spicy and acidic foods.
IC is rare so not many people know about it, even in the medical community. This adds to the challenges patients face since people around them misunderstand their condition.
What can you do?
The different symptoms of interstitial cystitis can severely affect a person’s life. It would be a great help if many people would understand this condition and be sensitive to the needs of patients.
Here are some of the things you can do to help:
1. Believe that their pain is real. Although IC is a chronic condition, the intensity of the symptoms may vary even throughout a single day. There may be times when the pain is manageable that they are able to move around and then suddenly flares up that they had to just stay in bed.
It might be tempting to say things like, “but you were fine just a few minutes ago” or “it’s just in your head, snap out of it”. It is important to keep in mind that their pain is real and comments like these only make the situation worse for the patients.
2. Ensure they have access to restrooms. Since people living with IC deal with frequent urination and urgency to urinate, it is extremely important for them to have access to restrooms at all times.
You may be organizing a meeting that includes a colleague who’s dealing with IC. Instead of just making sure the place is quiet enough for this meeting, find out if the place has clean restrooms that can be easily accessed when necessary.
3. Understand that certain foods can trigger symptoms. People living with IC avoid certain foods to help manage their symptoms. Each patient’s triggers may be different from another, but some of the usual include spicy food, alcoholic beverages, and acidic food.
In case you are having lunch with them and you notice that it’s taking them a long while to choose or they’re asking a lot of questions about the ingredients, understand that they’re not being picky. It’s just that the pain they experience from their condition can be so bad that they wouldn’t want to trigger flare ups.
Instead, it would be better if you could ask them in advance about the food and beverages they avoid and make sure they only eat what’s safe for them.
Interstitial cystitis can severely affect a person’s day-to-day life. But aside from the symptoms, unnecessary comments and how they are treated by other people can also be a challenge for them. Having people who understand what the patient is going through can make things a bit better for them.
Ben’s Friends is a network of safe and supportive online communities for individuals affected by a rare disease or chronic condition. Our Living with Chronic Pelvic Pain Community aims to provide online support to people affected by chronic pelvic pain including interstitial cystitis. If you think you or someone you know would benefit from our community, we invite you to sign up here.