Today I’d like to talk about something that a lot of my EndoSisters suffer from: Interstitial Cystitis, also known as IC.

Interstitial what? That’s what I thought the first time I heard of it a few years ago.  Heck, my doctor even suspected I had it (we check every time I go in for surgery, and so far: no tell-tale signs).  I’ve been telling myself for a few years now that I needed to research and write about it…so today I am!

What is it?

Let’s start off with:  it’s been around for quite a while.  The first written description of IC was back in 1836 by Philadelphia surgeon, Joseph Parrish.

It is a chronic, often painful,  incurable bladder condition that both men and women can suffer from.  In a nutshell, the signals that are usually sent from the bladder to the brain are a bit mixed up. And this mix-up can cause a whole host of symptoms, which I”ll describe below.   Although incurable…symptoms may regress or completely go away after time.

This condition goes by many names: Interstitial Cystitis (IC), Painful Bladder Syndrome (PBS), Bladder Painful Syndrome (BPS), and oftentimes is just labeled as chronic pelvic pain.

And, like Endometriosis, doctors are unsure as to what causes IC, although they theorize that it may be hereditary, an autoimmune reaction, inflammatory cell growth, an allergy, or a defect in the bladder tissue.

It is unclear how many people suffer from Interstitial Cystitis worldwide, but it is estimated 3-8 million women in the US have it; roughly 12% of women show early symptoms of Interstitial Cystitis; and it’s estimated that of the sufferers of IC, 80% are women.

Symptoms?

Symptoms can vary from person to person, may come and go, may be constant, or may flare-up due to certain triggers.  Some people mistakenly think they simply have a bladder infection.  Common symptoms include:

• Pelvic pain (it can range from mild to severe)
• Pain between the vagina and anus (in women) or from the scrotum to the anus (in men)
• Pain, pressure, or discomfort near the bladder, sometimes relieved after urinating
• Frequently going pee (some people pee as much as 60 times a day!)
• Feeling a strong urge to pee
• Peeing only small amounts
• Painful sex

Many women report symptoms are worse when they’re on their periods, have a urinary tract infection, after sitting for a long period of time, or even (noooooo!) after having sex.  And the lower quality of life, pain, and other symptoms may also have an effect on emotional well-being.

Types: there’s more than one?!

As of today, there are two types of IC: non-ulcerative and ulcerative. What does that mean?

Non-ulcerative interstitial cystitis is what 90% of IC patients are believed to have.  Little spots or blotches are seen inside the bladder and are called glomerulations.  There’s a caveat (isn’t there always?) – these blotches can be caused by any inflammation, so it’s not a 100% positive diagnostis of IC to just visualize the glomerulations. 

Ulcerative interstitial cystitis is what a lucky 5-10% of IC sufferers have. The red blotches found inside the bladder wall actually bleed.  They’re known as Hunner’s Ulcers.

But wait, there’s more!  A small percentage of IC suffers continue to have symptoms for longer than two years.  Their bladders may be very hard, have a small capacity for holding urine, and are constantly in pain.  This is known as End Stage IC (or Severe IC).  End Stage IC sufferers oftentimes also have Hunner’s Ulcers.

Diagnosis

Just how do you know if you have Interstitial Cystitis? There’s no ONE test to tell you if you do, or don’t have it.

A physician will likely take a detailed medical history, making note of any IC symptoms.  Then steps will be taken to rule out other causes of those symptoms.  A physical examination will likely ensue, and possibly a neurological exam.   And a urine test may be ordered, to also rule out a bladder infection. 

A cystoscopy can be performed, which is when a camera is smooshed up your hoo-haw to look at the condition of the urethras and bladder. The internal examination of the bladder will help look for those blotches we discussed previously.

Another test that may help doctors come to an IC diagnosis is called hydrodistention.  It means they insert a catheter, fill your bladder with water, and measure the pressure as the bladder fills and empties.  It may even give them a first-hand encounter as to your pain responses when the bladder does its fill & pee thing.

Treatment Options

Talk to your doctor before doing ANY of this! I’ve found references to the following treatment options (and this is by no means complete):

Lifestyle changes

Stress may be a big factor in triggering symptoms…so being able to either eliminate or alleviate stress may help ease IC symptoms.

Diet changes

Although there is no official “IC Diet,” many people report that gluten and dairy trigger their symptoms.   A balanced plate of fresh fruits and veggies, grains, and proteins seems to be the overwhelming advice.  Also, avoiding processed foods and keeping a food journal are also popular suggestions.  Many people have found that their symptoms are worse after eating chocolate, tomatoes, spicy foods, carbonated beverages, high-acid food or drink (like cranberry juice), drinking alcohol, or caffeine.  Learn your body and what does, or doesn’t influence your IC symptoms.

Bladder training

literally retraining your bladder; learning to pee on a set schedule, rather than when your bladder screams at you (although, if it is painful…by all means, go!) Bladder training can take anywhere from 2-12 weeks to see results and may help with frequent urination complaints.  Keep a diary of bladder activity to keep track of how you’re doing!

Physical therapy or pelvic floor therapy

A pelvic floor therapist can help stretch and strengthen the muscles of the pelvic floor, which may help with ease symptoms…BUT BEWARE – some studies have shown that it  may also worsen symptoms.  This includes kegel exercises!

Medications

Over-the-counter pain medications (such as Ibuprofen and aspirin) may alleviate some bladder pain and discomfort.  

A prescription drug known as Elmiron has been shown to relieve IC bladder pain and discomfort.  It was approved by the FDA in 1996.  The manufacturer’s webpage states it is a weak anticoagulant and “[i]t is not known exactly how Elmiron works.”  It may adhere to the mucous lining of the bladder, subduing irritation.  Elmiron also comes with a whole slew of possible side effects that may not be worth it, but decide for yourself and talk to your doctor.

Low-dose tricyclic anti-depressants may relax the bladder, ease pain and improve sleep.  Most commonly prescribed is Amitriptyline.

Antihistamines may also help with inflammation and pain.  If you go this route, though, beware of drowsiness.

There are also several prescription medications used to relax the bladder walls to reduce instances of incontinence.  Think of that “gotta go, gotta go, gotta go right now” jingle on TV.

Gabapentin is an anti-seizure medication and also treats nerve-related pain.  Some studies have shown Gabapentin-use to improve some symptoms in IC sufferers. 

Cyclosporine is an immunosuppressant drug given to patients who receive organ transplants; it’s taken so the new organ doesn’t get rejected by the host body.  A 3-month clinical trial of 26 participants in 2017 found that 30% of them showed improvement in their IC symptoms.  Supposedly, it suppresses immunological responses, aka inflammation, which is an autoimmune response.  Cyclosporine is not yet FDA approved to treat IC.

As always, please talk to your doctor before starting any over-the-counter or prescription regimen.

Distending the bladder

The aforementioned procedure (hydrodistention)  to fill the bladder to test for pressure thresholds, etc. also has been found in some women to relieve their IC symptoms, for a time.

Electrical nerve stimulation

Neuromodulation therapy uses electrical stimulation to alter the way our nerves work.  It’s painless, and sometimes (if the settings are too high) feels like a pinch.

Many people have reported good results with controlling pain using a TENS unit.  

Another option is an implantable device known as the InterSim, which stimulates the sacral nerve to control bladder issues.

Bladder instillation

Going back to the catheter in the bladder method, but this time instead of water or a saline solution, it’s a liquid drug.  The fluid is held in the bladder for up to 20 minutes, then released (aka just let it go…pee it out!). It may cause immediate relief…or a flare-up, but with continued treatments, it may temporarily ease symptoms.

Dimethyl sulfoxide (aka DMSO) is a bladder instillation that is administered weekly, for usually six to eight weeks.    It was approved by the FDA for human use in 2002.  Cystistat and Hyacyst are also bladder instillation drugs, but are not approved for use in the United States.  You can, however, get these treatments in Canada and Europe.

Other bladder instillations may use a combination of different liquid medications and treatments may take place three times a week.

Botox

Just like people get Botox injections to help with facial wrinkles and migraines, you can also get a Botox injection for your bladder!  It’s temporary and may require multiple treatments but may help with overactive bladder muscles.  If you receive Botox injections for your IC, please be sure to tell your doctor if you develop difficulty peeing.

Surgery

In some cases, surgery is the last resort to dealing with pain.   You may be asking how the heck any type of surgery can help with IC issues.  Well…read on:

Under anesthesia, some ulcers inside the bladder may be cauterized.  

A bladder augmentation surgery can make the bladder larger.  

In a cystectomy, they take out your bladder and give you a “new” one using intestinal tissue.  And having this new, non-bladder bladder usually means you’ll need to use a catheter whenever you want to pee.

Other

People have also reported good results with warm baths, stress reduction, exercise, and biofeedback.  It truly is about finding what works best for you and your IC.

If you’re interested in any of these treatment options, please address them with your healthcare provider. 

Know You’re Not Alone

If you suffer from IC, I mean it: you’re not alone. 

The Interstitial Cystitis Association has put together an extensive video library on Youtube with expert interviews, IC advocates, and sufferers.  If you’re curious, you can check it out here. 

The ICA has also created an online support community for people who suffer from Interstitial Cystitis.  Please feel free to sign up here. 

The IC Network also has a list of support groups around the United States.  Click here to find one near you!

Just a little note if you’ve made it through my blog entry today and you haveIC…if I’ve misunderstood any of my research or if you would like me to add something, please let me know!

Resources:

Bladder Pain Syndrome (Abstract; Aug. 2017) – Botulinum Toxin in Treatment of Bladder Pain Syndrome/Interstitial Cystitis

Centers for Disease Control & Prevention – What is Interstitial Cystitis?

Cleveland Clinic – Interstitial Cystitis (Painful Bladder Syndrome)

Clinical Trials – Cyclosporine in Interstitial Cystitis: Efficacy, Safety and Mechanism of Action (CIC)

Elmiron manufacturer webpage

Expert Review of Clinical Pharmacology – (Abstract; April 2018) – Pharmacological Management of Interstitial Cystitis/Bladder Pain Syndrome and the Role Cyclosporine and Other Immunomodulating Drugs Play

Harvard Health Publishing – Treating Interstitial Cystitis

Interstitial Cystitis Association – Bladder Retraining

Interstitial Cystitis Association – Interstitial Cystitis and Diet

Interstitial Cystitis Association – IC Plate

Interstitial Cystitis Association – Other Medicines

Interstitial Cystitis Association – What is Interstitial Cystitis?

Mayo Clinic – Overview of Interstitial Cystitis

MedLine Plus – Interstitial Cystitis

National Institute of Diabetes and Digestive and Kidney Diseases – Cystoscopy & Ureteroscopy

National Institute of Diabetes and Digestive and Kidney Diseases – Interstitial Cystitis (Painful Bladder Syndrome)

National Institute of Diabetes and Digestive and Kidney Diseases – Treatment for Interstitial Cystitis

Office on Women’s Health – Bladder Pain

The Journal of Urology – (Abstract; Jan. 2004) – The Historical Origins of Interstitial Cystitis

UpToDate – Patient Education: Treatment of Interstitial Cystitis/Bladder Pain Syndrome(Beyond Basics)

Urology Care Foundation – First Phase: Lifestyle Changes

Urology Care Foundation – Fourth Phase: Cyclosporine

Urology Care Foundation – Interstitial Cystitis

Urology Care Foundation – Third Phase: Neuromodulation, Ulcer Cauterization and Injections

US Food & Drug Administration – Dimethyl Sulfoxide

US Food & Drug Administration – Elmiron

Womens Health Matters – Interstitial Cystitis

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 
Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa