Today I’d like to share Beth’s IC success story on how she managed to send interstitial cystitis into remission.
I found her story very inspirational and it shows once again that diet and lifestyle changes are a must when dealing with IC.
It also shows that finding the right doctor/therapist/caregiver and getting your loved ones on board is so important!
I hope this story will give you some inspiration to take the first steps improving this painful condition!
Beth’s Story: Finding A Specialist Helped Me Learn How to Live a Pain-Free Life
“Someone has a sweet tooth.”
This is a comment made by a doctor I recently visited when he inspected my throat. It was in reaction to two gold crowns covering my lower wisdom teeth.
I don’t have a sweet tooth. I stopped eating sugar years ago because I believe, as do many highly-educated healthcare professionals, that sugar is poison. And this doctor must, too, based upon his knowledge that sugar destroys teeth.
But it wasn’t sugar that destroyed my teeth. It was being raised in poverty by my father after my parents divorced. He didn’t think going to the dentist was important. He didn’t think nutrition was important. My teeth, and my general health, suffered greatly.
But this one statement reveals so much about the state of healthcare in the world.
First, this doctor made an assumption about me based upon a quick and superficial assessment. He assumed he knew the root cause of my crowns. He was certainly not far off from the truth – but by going straight to a conclusion without further examination, he missed so much of what is vital to treating my issues.
Second, doctors know that sugar is bad for us. Yet they do very little to curb Americans’ appetite for sugar and simple carbohydrates. Obesity isn’t the only consequence. There are many health risks as a result of too much sugar in our diet.
Among the health risks is interstitial cystitis (IC).
While the medical community doesn’t know the cause of interstitial cystitis, many of us who suffer from it and who practice food journaling have a pretty good idea as to what foods trigger an IC flare.
For me, it’s acidic, spicy, processed, and fermented foods.
This includes the most basic of common ingredients; things like sugar, vinegar, black pepper, ascorbic acid, tomatoes, aspartame, alcohol, and many others.
I’ve also discovered that gluten is a trigger – for an IC flare, but also for migraines, IBS, joint pain, brain fog, malaise, weight gain, and so many more symptoms.
But just because these things trigger a flare in me, doesn’t mean they trigger a flare in others with IC. We have to keep in mind that we’re all the result of our individual chemistry and biological processes.
There is no “one size fits all” solution with food sensitivities. Doctors cannot make assumptions about you based upon superficial evidence.
And they cannot simply prescribe a common drug and declare, “Problem solved!”
Find A Specialist
It is important for anyone suffering with IC to find a specialist who is an expert not just in IC, but
also in IC nutrition, and who can coach you through an elimination diet and the practice of food
Yes, it’s a pain. But not so painful as the IC flares or the potential long-term damage that can be done to your bladder if you do nothing.
Beth’s IC Journey
My IC started in high school but it took nearly 20 years of visiting doctors to finally find someone who knew a little bit about it.
This doctor told me to make sure I showered before and after sex, to avoid swimming, and to always void my bladder and never “hold it.” That was the extent of what she told me.
It would be another 10 years of suffering before I finally found a doctor, who I saw because I suspected that I had vulvodynia, to tell me about the impact of food on my bladder.
What was confusing to me about IC is how it manifested. My flares appeared to be not just the classic bladder infection, but also pain in my vulvar area.
I also have endometriosis, so I thought the pain was signaling that it was time for another laparoscopy. But after surgery, and removal of a lot of endometrial lesions, the pain in my genitals did not go away.
I consulted a different doctor and she asked me if I had heard of IC. Surprised, I told her I’d been
diagnosed with it a decade before.
She asked me what my diet consisted of. She was horrified to hear that I ate spicy foods, had vinegar, drank coffee, and many other foods considered taboo for IC.
While I’d already given up gluten, alcohol, and sugar to ease migraines, she said that I had to go on an elimination
diet and keep a food journal. After doing so, I identified many other triggers for IC flares, including my most beloved morning coffee.
It took about a year, but I slowly removed all of the offending foods from my diet. The pain I thought was vulvodynia was gone and only returns when I eat a food that triggers a flare.
My doctor also prescribed physical therapy with a chronic pelvic pain specialist. This caring physical therapist taught me many exercises and lifestyle changes that have significantly helped me remain IC-flare free.
She also helped me to have a far more satisfying sex life with my husband. One thing she told me – no Kegel exercises! I had no idea.
I also cannot run any longer because the motion really irritates my sensitive bladder. I used to rebound (mini-trampoline), and I’ve had to give that up, as well.
But now I weight-lift, do yoga, ride a recumbent bike at the gym, walk, hike, and I use a balance board (the Pona Ola board because I don’t fall off of it) with many of my yoga poses to increase my core strength.
I had genetic testing done to determine the best medications to take and ibuprofen was on the “never take” list for me. I strongly encourage everyone to have a medication profile completed using genetic testing. My doctor put me into a study of genetic testing, so I haven’t had to pay for the testing nor any of the follow-up visits.
I only use rescue medications, prescribed by my doctor, when I’m having flares. Flares are usually the result of traveling or having dinner at people’s houses where my food options are limited or from especially passionate sex with my wonderful husband – which, I’m sorry (I’m not sorry!), I’m not giving up.
I always have my medications available (Azo is a big help).
If I have any pain at all with sex, I have a prescription for ciprofloxacin (Cipro) and I will take a 250mg tablet proactively to minimize the effects. Cipro is a very strong antibiotic. But it is also an anti-inflammatory medication that is much safer to use than ibuprofen for those of us who are at high risk of stomach ulcers and heart issues.
The medications that help you can only be determined while you’re in the care of a doctor with highly-specialized expertise in IC and the process of an elimination diet and food journaling.
Beth’s Recommendations for Dealing with IC
This is my recommendation for anyone dealing with any chronic pelvic pain, which could be the red flag signaling
- Find an IC specialist (join the IC Network and use the network to find a local specialist who is endorsed by other IC patients; URL https://www.ic-network.com/)
- Find a doctor who will use genetic testing to determine your medication profile and test specifically for NSAIDs, antibiotics, pain medications, antidepressants, and other medications your IC doctor recommends
- Use a doctor-supervised elimination diet and food journaling to identify the food triggers for IC flares
- Likewise, use an activity and exercise journal to identify the movement and activity that trigger flares, things like running, sex, roller coasters, swimming, cycling, etc.
- Bring your partner to doctor visits to ensure they are educated on the dramatic lifestyle changes you have to make to remain pain-free and healthy and, most critically, to develop a real understanding of the invisible pain you are dealing with
- Do not ever engage in sex when you know that your body cannot handle it; do not be guilted into sex by someone unsympathetic to your pain and health – a loving partner will and should understand (and they are out there – my husband is among the best of caregivers and partners)
- Accept your condition and view every act of self-care as an act of empowerment, self-love, self-preservation, and as an act that leads to a pain-free life
- To remain grounded, walk in nature, meditate, practice deep breathing, join a yoga class, take naps, relax, laugh, hug, and learn to enjoy life – all of these things are free, except the yoga class – but you can also stream yoga courses on the Internet for free
- Most importantly, make taking care of yourself a top priority
For me, it took thirty years before I started to find the specialists who helped me learn to live a pain-free life. There are so many resources available now – take action and learn from the experiences that so many of us have had. You don’t have to suffer. You don’t have to become celibate.
You don’t have to live in pain.
Pin it for later:
Sheryl ChanFebruary 27, 2017
Helpful and informative article as always! ?
bladderhelpFebruary 27, 2017
Boni Wagner-StaffordFebruary 27, 2017
Great article. Question for you and other readers: is there any way to stay away from antibiotics altogether with IC? Mine manifests as recurrent bladder infections, and the only remedy that keeps them at bay is to take antibiotics DAILY. I have fibromyalgia as well, and antibiotics throw off my gut bacteria and leads to fibromyalgia symptom flareup. I’m eating clean, avoiding wheat and dairy and processed food and coffee and alcohol – – I use a teaspoon of organic coconut palm sugar in my morning matcha tea and have a piece of fruit every second day. I have not found an IC specialist… a little difficult as I live on my sailboat currently in Mexico!
LaylaFebruary 28, 2017
I’m so sorry you have to go through this! For me personally antibiotics caused IC and a great deal of gut dysfunction.
There are several natural antibiotics you could try, the most promising of which is monolaurin as it doesn’t seem to hurt the good guys. Check out my ‘supplements for cystitis’ article.
Recurring cystitis like that is often due to biofilms – I’ve written two articles on that you might want to check out.
Being on a boat sounds amazing, I hope you can enjoy it despite the illness!