Fibromyalgia, chronic fatigue syndrome and interstitial cystitis (IC) — a painful bladder condition — frequently occur together. Women may be up to 10 times more likely than men to develop it.
Having IC alone can impose a lot of restrictions on your lifestyle and, like fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), it’s linked to depression. Also like FMS and ME/CFS, IC can be difficult to diagnose, treat and manage.
Some people have good luck with basic treatments and dietary changes, while others may need more intensive treatments or even surgery.
Interstitial cystitis (IC) is abdominal or pelvic pain related to your bladder getting full, often accompanied by other urinary symptoms, but with no infection or other obvious diseases. The cause of IC is unknown. Frequently, doctors misdiagnose it as a urinary tract infection, and most people have IC for about 4 years before they’re diagnosed correctly.
- Urinary frequency (more than 8 times a day)
- Urinary urgency
- Urinary discomfort
- Pain during or after intercourse
- Pelvic pain
You’re most likely to develop IC in your 30s or 40s, but it’s also possible to get it earlier or later.
Why the overlap? Good question! Problem is, we don’t have an answer. Researchers are still trying to puzzle out the causes and underlying mechanisms of all these conditions, and until they can, we probably won’t understand why they overlap.
Some possibilities exist, including:
- Researchers suspect chronic infection could play a role for all 3 diseases
- The pain of all 3 is believed to originate in the nerves
- Chronic pain from IC may lead to the central sensitization suspected in FMS and ME/CFS
- Research released in early 2009 suggests that some patients with IC have a systemic syndrome and not one that’s confined to the bladder
Because all 3 conditions are far more common in women, hormonal or anatomical differences may be at work as well.
An emerging umbrella term for conditions involving central sensitization is central sensitivity syndromes.
IC is diagnosed primarily based on symptoms. Before diagnosing IC, your doctor will need to rule out other possible causes of your symptoms. Tests include:
- Bladder biopsy
- Cystoscopy (endoscopy of bladder)
- Urine analysis & culture
- Urine cytology (for detecting cancer and inflammatory diseases in the urinary tract)
- Video urodynamics (which shows how much urine it takes for you to feel the need to urinate)
To confirm an IC diagnosis, your doctor may perform a hydrodistention, in which your bladder is filled with water. That helps your doctor view your bladder walls for possible hemorrhages common in people with IC.
IC isn’t well recognized or easily diagnosed, so if you think you have it, mention it to your doctor.
There’s no cure for IC, and treatment needs to be tailored to the individual. It can take a lot of trial and error before you find the right combination of therapies and lifestyle changes.
Your doctor may prescribe one of the several medications for IC:
- Elmiron (pentosan)
- Opioid painkillers, such as Vicodin (hydrocodone-acetaminophen) or Percocet (oxycodone-acetaminophen)
- Tricyclic antidepressants, such as Elavil (amitriptyline)
- Vistaril (hydroxyzine)
Other treatments include:
- Bladder training (relaxation techniques to train the bladder to go only at specific times)
- Medicines placed directly into the bladder
- Physical therapy and biofeedback (aimed at relieving muscle spasms)
Dietary changes also can help manage IC. The Interstitial Cystitis Association has information about dietary changes that may help.
Combining Multiple Treatments
If you’re being treated for IC and FMS or ME/CFS, you should talk to your doctor and pharmacist about any possible drug interactions.
For instance, you shouldn’t take SSRI/SNRI-type antidepressants, which are common treatments for FMS and ME/CFS, with tricyclic antidepressants used for IC. Also, the FMS treatment Lyrica (pregabalin) doesn’t mix well with prescription pain medicines.
However, the tricyclic antidepressants prescribed for IC work well for some people with FMS or ME/CFS, and other IC treatments such as physical therapy and biofeedback may provide a cross-over benefit. You may also have food sensitivities that exacerbate more than one condition, so an elimination diet could really help you.
Because pain from other conditions can make FMS symptoms worse, you’ll really benefit from finding a good treatment regimen for IC.
Any one of these conditions is hard to live with, so when you have them in combination it can take a big toll on your life. Limitations imposed on your life by pain, fatigue, and urinating possibly dozens of times a day often can lead to depression, loss of social life, unemployment, and other problems.
It’s important to find and follow a treatment regimen that works for you, and to seek out support either from people in your life or support groups, online or in your community.
Here are more resources to help you learn about, manage, and live with IC:
- Interstitial Cystitis Basics: Symptoms, Diagnosis & Treatment from Mary Kugler, R.N., Expert on Rare Diseases.
- Interstitial Cystitis: Questions & Answers from Expert on Women’s Health, Tracee Cornforth
- Interstitial Cystitis Association