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What It's Like to Struggle with Interstitial Cystitis

Author
Alicia Betz
April 6, 2021

It’s easy to read about symptoms of a health condition online and then quickly move on with your day. If you’re not personally afflicted by the pain and inconveniences that come with the condition, you might not stop to think about how it really impacts people’s lives. The fear, the frustration, the pain, the decreased quality of life. Well, we stopped and we thought, and we talked to three women who suffer from interstitial cystitis (IC). 

The women we spoke to have suffered with IC for varying lengths of time. Susan Wong was diagnosed in 1989, but has struggled with symptoms on and off since 1970. Brenda Minichello has suffered with the condition for 28 years, and Sheba Mccuen has had IC for almost all of her life, but was formally diagnosed 30 years ago.

IC Symptoms and Struggles

Two struggles that seem to be common among all three women we spoke to are pain and frequent urge or urinate. Pain and urinary frequency are also the two most common symptoms reported in literature. For many people, the struggles of IC start long before an official diagnosis. That’s what happened with Sheba, who kept having her IC misdiagnosed until a new urologist finally gave her the correct diagnosis. 

However, Susan spoke about how meals are difficult for her and a constant struggle because she has such a restricted diet because of her IC.  It is hard for her to eat out at a restaurant — something that is enjoyable for most people.

“I hate eating in restaurants since I have to be so specific about what I cannot eat to the waiter that it ruins the whole experience.”

Susan Wong

She even explained that he often tells the waiter that she is “NPO,” which means she can’t eat anything by mouth. “That is just easier, but so not fun,” she said. When she does eat food at a restaurant, sometimes they mess up her order and she ends up in pain for weeks. 

Brenda described what some of her worst symptoms were like before she started medication. They included: 

  • Urinary frequency
  • Bloating
  • Intense bladder pressure
  • Urethral pain
  • Low back pain
  • Difficulty urinating
  • Vulvodynia (chronic pain in the vulva)
  • Yeast infections

The women we spoke to also explained that food can be a major struggle. Restricting their diets helps control symptoms, but it’s not fun. Susan said that preparing meals is more difficult and eating is generally an unsatisfactory experience. She’ll take that over the bladder pain, though. Enjoying food is something many of us take for granted, but it’s something that people with IC and other chronic conditions have come to think differently about. It’s hard to enjoy your food when you have to examine every label, give explicit instructions to waiters at restaurants, and completely refrain from eating in certain situations. 

living with IC

Another struggle for people with IC: finding a restroom. Because they often have urinary frequency, they can only go places where they know a restroom will be nearby. This makes it hard to be spontaneous. People with IC also have to think twice about going somewhere that might have long restroom lines. Waiting in a long line to go to the bathroom might not be feasible.

How to Control IC

We also spoke to the women about medications and therapies they have used to try to control their IC. Here is a combined list of medications and therapies the women have tried:

  • H2 blockers
  • Sodium Cromolyn via catheter
  • Elmiron
  • Singulair 
  • Amitriptyline
  • Aloe vera capsules
  • Restricted diet
  • Antibiotic therapy
  • Pyridium
  • Urised
  • Bladder surgery
  • Heparin 
  • Claritin 
  • Physical therapy

That’s quite the list of medications for just three women. For the women we spoke to, some of these medications and therapies have worked better than others. Susan’s urologist urged her to stop taking Elmiron in 2020 when evidence of serious retinal damage due to the drug came to light. That drug was working for her, but she found Singulair worked well for her after she stopped Elmiron. Brenda still takes Elmiron, saying “For me, I can’t live without Elmiron.” 

ic bladder

Following a restricted diet works well for many people. Sheba explained that everyone has different triggers for their IC. Something that she can eat with no problem might be a major trigger for Susan, for example. Finding out out what triggers your IC and then avoiding that food can make a huge difference. For example, Brenda mentioned that she can’t eat anything that contains citric acid. 

“Keep a food and pain diary, “Susan said. This can help you determine what triggers IC. She also shared a list of common triggers that she has used for decades. This list can help people with IC navigate food choices and determine what their triggers are.

Advice for People with IC

We asked the women to share any advice they had for people who are newly diagnosed with IC, and they had a lot of information to share. 

Susan offered this advice, “Find a good urologist who specializes in women’s urology (not so easy to find)... If they mention Interstitial Cystitis in their list of specialities this is great. A uro-gynecologist is even better.” She also reiterated the importance of diet and empathized with newly diagnosed people saying that it can be hard to admit that diet makes a huge difference. 

Brenda encouraged newly diagnosed people to find a doctor that believes them. She knows this from experience — she went through several doctors until she found one who believed her.

“Find a Doctor that believes your pain and accepts that it affects your quality of life with the understanding that IC symptoms are intolerable to live with."

Brenda Minichello

Sheba simply said “Don’t give up!"  Living with IC can be painful, difficult, and frustrating, and for many people with the condition, it takes years to find treatments that work. Perfecting the IC diet that works for you can be very hard, particularly because we tend to have such emotional connections to food. It’s hard to come to terms with the fact that some of your favorite foods are now off-limits.

The Bottom Line

We want to thank Susan, Brenda, and Sheba for being brave and sharing their stories and struggles with IC. By telling their stories, we hope to help others struggling with this condition feel less alone and more empowered. We also hope that Susan, Brenda, and Sheba’s stories might help others find a therapy that works or seek out a doctor that truly understands IC.

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We are here to help you and loved ones advocate for justice. Feel free to send us any questions you might have, either about an injury or the process for pursuing justice so we can help you exercise your rights.

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