IC Awareness Month

September is IC Awareness Month, so, as someone living with IC, I am doing my part to spread awareness.

IC stands for interstitial cystitis, which is also known as bladder pain syndrome or hypersensitive bladder syndrome. Symptoms, for most, include pelvic pain or pressure and increased urinary frequency/urgency. It affects millions of people in the US and millions more around the world, although estimates of prevalence differ. Part of the reason that statistics are hard to come by is that many people see multiple doctors for years before they are correctly diagnosed. This delay is further exacerbated by the fact that IC is more common among women. As with other ailments among women, some patients have been told their symptoms are “all in the their heads.”  Others have been misdiagnosed with reproductive system problems. Among men with IC, the misdiagnosis is usually chronic prostatitis.

Another problem with getting a correct diagnosis is that there is no definitive test for IC. One subtype of IC, accounting for about 10% of cases, causes lesions in the bladder, which can be seen during cystoscopy, but the other types do not have that straightforward a presentation. Diagnosis is also complicated by the fact that no one knows what causes IC. It behaves somewhat like an autoimmune disorder and also seems to be related to the nervous system. Research is ongoing. Many patients with IC also have periods where the symptoms flare up and other times when they are lessened or absent. This can also be a factor if you have a long wait to see a specialist; your symptoms may have disappeared by the time of your appointment.

I have one of the subtypes of IC in which its symptoms occur in conjunction with other pain syndromes, such as irritable bowel syndrome, endometriosis, and vulvodynia. This can complicate treatment because there are so many different factors involved. Some people with IC, like me, have success with medications. Once symptoms have calmed down, the medication regimen may be ended and other methods, such as dietary changes and stress reduction, may be able to avert flares or, at least, keep them manageable.

One of the things that I need to avoid is acidic foods. I do have a dietary supplement that helps with eating acidic foods, including fruits, although I still avoid citrus. When I make tomato sauce, I put in a bit of baking soda to counteract the acidity. Bonus: it’s fun to watch the sauce foam and bubble! It can be difficult to find things to drink beyond water and milk. I never was a coffee and tea drinker, so I didn’t have to worry about giving those up. I can’t have anything carbonated, so no sodas or sparkling water. (Some people with IC can drink certain varieties of coffee, tea, and soda; sometimes, trial and error is needed to figure out what works for an individual.) My new splurge drink is Hint, fruit-flavored water without added sweeteners or calories. It’s fun to have another option.

The most difficult thing for me to avoid is chocolate. I can have white chocolate, although I need to shop carefully as some of it is just bad. It is the cocoa component that is the culprit with IC, causing a histamine reaction in the bladder. I admit that I miss milk and dark chocolate, and, especially, hot cocoa, which I used to make with cinnamon and ginger. Every once in a while, I will eat a bit of chocolate. I’ve found if I eat just a little, I can manage the flare that will follow, but usually I am good and avoid it completely.

If you think you may have IC, bring it up with your doctor. My doctor recommended that I see a urogynecologist, who was able to diagnose and treat me properly. There are treatment options out there, which differ depending on the subtype of IC you have. Some types are able to be cured with the right therapy, while most others can learn to treat and manage their symptoms.

Don’t let anyone tell you that your symptoms are all in your head! Don’t try to self-treat because of embarrassment or other factors. You can find more info about IC from the Interstitial Cystitis Network, which is one of the sponsors of IC Awareness Month, or from reputable medical websites.  The stress of feeling alone with your illness can make it even worse, so reach out.

One final thought:  Please keep in mind that IC and many other illnesses are invisible. This does not mean that they aren’t causing pain or other symptoms. Just because someone “looks fine,” doesn’t mean they are fine. If someone you know has or may have an invisible illness, treat them with kindness and understanding. Help them find the medical help they need. Support them as they deal with their illness. It will make a difference in their lives.


IC September

I am not only an eclectic blogger, but also an eclectic follower and reader of blogs. While I follow other eclectic blogs, I also follow blogs focused on travel, food, photography, poetry, the environment, and many other topics.

I follow several blogs where people write of dealing with illness, particularly invisible illnesses, such as fibromyalgia. I do sometimes write here about being the parent of a child with fibromyalgia, but what I haven’t written about is dealing with invisible illnesses of my own. Today, in observance of Invisible Illness Awareness Week  and the close of IC Awareness Month, I have decided to write about interstitial cystitis, which has been part of my life for many years.

Part of the reason I don’t tend to write about having some hidden medical conditions is that I feel fortunate that I do not have the more severe symptoms that some others endure, although, if I am honest, I have to admit that my symptoms, especially when I am having a bad flare, do interfere with what I am able to do and where I am able to go. Again, I am lucky that my personal schedule is usually fairly flexible, so that I can arrange to stay home if I am uncomfortable or tired from being kept awake by symptoms. I am acutely aware that others have it so much worse and I am writing this not as a complaint but in an effort to share some information about a condition which, although relatively common, many people are unaware.

What is interstitial cystitis (IC)? 
Interstitial cystitis, also called bladder pain syndrome, is a condition that can cause recurring bladder and pelvic pressure or pain and increased urinary frequency and urgency.  The bladder lining often bleeds and, in more severe forms, develops a kind of ulceration called Hunner’s lesions. It is more common in adult women but can and does affect children and men, too. The symptoms often vary over time, with more severe flares cropping up from the baseline level.

What causes IC?
Researchers don’t know for sure. They think that some trigger event damages the lining of the bladder, with particles in the urine then further damaging the lining and causing chronic nerve pain. It is believed that the bladder lining is unable to repair itself because IC patients produce a protein that prevents the repair.

How is it treated?
Because the cause is undetermined, treatment centers on trying to alleviate symptoms and prevent flares. One of the most important things people with IC need to do is control acids in their diet. (For me, drinking soda or undiluted fruit juice is the equivalent of pouring lemon juice on a cut.) There are a few oral medications that help some people. Physical therapy can be prescribed. When the condition is more severe, there are medications that are delivered directly into the bladder, surgical treatment for Hunner’s lesions, and use of electrical nerve stimulators.

And for more fun and games…
IC often appears alongside other conditions, many of which are also poorly understood as to causation. People with IC often have allergies, irritable bowel syndrome, and sensitive skin. (Check, check, and check for me.) Other conditions that may occur alongside IC are vulvodynia, fibromyalgia/chronic fatigue syndrome, and lupus. I’ve actually taken part in research looking into genetic predisposition in IC patients, which is interesting as I have family history with some of the related conditions besides my own diagnosis.

For anyone who would like to learn more about IC, I recommend this site:  http://www.ichelp.org which is full of helpful information and links to more resources.

Please remember…
There are many, many people who deal with hidden medical conditions. Many of these cause chronic pain. And many of these people do not look “sick.” Please, have compassion. Be understanding. Don’t blame them if they have to change plans at the last minute or aren’t able to go out of the house because they are having a bad day – or an exhausted day because they had a bad night before. Remember that you are lucky to be having a good day and realize that a day may come when you need the same kind of support and caring that your friend or family member needs now.

– JC

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