Interstitial Cystitis

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

Share Your Story: Aly

Aly standing in front of a block wall

Aly was diagnosed when she was 15 years old.  Now 21, she shares her Journey with us, and she has been through so much.  She does, however, continue to fight and push ahead and raise awareness.  She’s an incredible woman.  And one hell of a Warrior.

Aly’s Journey: I have been a runner since I was four years old. It has always been my passion, but it was also where my pain began. In the spring of my junior year, I was running on the track as usual when I suddenly I fell to my hands and knees in severe pain. I vomited when I tried to get up. It was the beginning of a life-changing injury in which I would endure unbearable stomach pain that I still experience even though it has been 7 years since I was diagnosed.  At first, I tried to brush it off. Each race, I believed that I only needed to work through the pain and simply get to the finish line. I would continue running and then collapse at the finish. Oddly, it never occurred to me to stop running. Injuries are part of an athlete’s life.

At my first doctor’s visit, I was told that that the pain could stem from ovarian cysts that might be rupturing and causing extreme discomfort. I underwent a round of ultrasounds and MRIs, but each time the tests would come back perfect. They couldn’t find anything wrong with me. The doctors treated me with painkillers and, when the season was over, I did well for about a month.  But when I attended a Leadership Conference that summer, I had one of my worst attacks. I collapsed, cried and was once again in excruciating pain.

When I returned home, my gynecologist said I could have endometriosis, a condition where tissue that grows inside your uterus grows outside it. It can make it hard for women to have children. I was sixteen when they told me I probably would not be able to have children. At that age, you are just trying to live and not thinking about the future. I had to grow up fast. The doctor did not want to perform exploratory surgery because I was so young, so they began to treat me for it with birth control medication. Even so, my condition failed to improve, and my doctors began to think there might be a problem with my intestines.

After they ruled out Irritable Bowel Syndrome they began to wonder if my intestines had somehow become twisted. My third doctor, a gastroenterologist, ran more tests, but the results were the same: I was perfect.

At this point it would seem like it was a blessing that nothing was wrong, but it wasn’t.

I had been in inexplicable pain for months and no one was helping me. The gastroenterologist suggested a colonoscopy and said that even if my colon was fine he would still give me a trigger injection into the area where I usually felt the most intense pain. If I was pain free for 6 to 8 hours after, he said, then it was most likely a nerve entrapment. Of course, my colonoscopy was perfect. He gave me the injection and for eight hours I felt relief, but soon the pain returned, heightened to a new extreme.

After three weeks, my fourth doctor, a pain management/anesthesiologist, used an ultrasound and finally discovered the nerve entrapment that was causing the problem. He injected the exact spot, and, after seven long months, I finally felt relief. I had forgotten what a pain-free stomach felt like. However, this only helped for a little while.

About a month later, I was collapsing and in extreme pain again. I went back to my gynecologist and we decided to do a laparoscopy my junior year of high school. When they opened me up, I was covered with endometriosis. It had started spreading to different organs. The doctor put in an IUD, another form of birth control inside my uterus which was normal protocol for endometriosis. Having the endometriosis areas removed improved my pain but a year later I still had pain. I am on a high dosage of birth control and do not have periods, but it only helps the pain a little bit.

Though I still have pain, I continued to run. My dream has always been to follow in my father’s footsteps and run in college. I continued to push through the pain even though it got worse.

I ended up going back to the gastroenterologist because I was having a hard time eating, having regular bowel movements and the pain was severe again. I was diagnosed with Irritable Bowel Syndrome (IBS) with Chronic constipation. I am on medication for this, but it does not improve the situation. I didn’t let this stop me from fulfilling my dream. I worked through the pain and became a collegiate runner. I was so happy to have finally made it, but it was going to be a long difficult road ahead of me.

During my freshman year of college, I was doing better from the pain until mid-season when I started having extreme pain and noticed I was gaining a lot of weight. I understand the freshman fifteen, but this was different. I was running fifty miles a week but still gaining weight. I went to back to the gynecologist to find out that the IUD was causing me to gain weight and have ovarian cysts. I decided it was time to have the IUD removed. I had to be put under to have it removed because it was too painful to be awake. I also have never been able to use tampons, so the insertion process has always been unbearable. I thought I was weird because I couldn’t use tampons the way my friends could. I got the IUD removed right before my sophomore year of college and was back the on pill.

I was still having pain though. I kind of got used to always having pain that I hid it away, so no one could ever tell what I was going through daily. Every year before the season starts, we must get physicals done and my sports trainer pointed me in the direction of a pelvic floor dysfunction therapist. I had never heard of pelvic floor therapy, but I was willing to try anything. It was something new and it turned out that I was diagnosed with pelvic floor dysfunction which is the inability to control your pelvic muscles and the therapy seemed to help all my conditions.

Now I am at six different chronic illnesses and I couldn’t possibly think I could have anything else wrong until I noticed that I had a hard time releasing urine. In my junior year of college, I noticed I never had the urge to urinate and it was causing extreme pain and puffiness in my body. I was retaining urine but drinking around fifteen bottles of water a day. I went to see a urologist, who ran scans and urodynamic tests. The results showed that I had pelvic floor dysfunction which I already was treating. So, the urologist decided to put me under and do a cystoscopy with hydrodistention. She was looking for Interstitial Cystitis (IC). IC is s a chronic condition causing bladder pressure, bladder pain and sometimes pelvic pain around bladder lining. The procedure showed that I have IC and my bladder lining had tears in it.

After the procedure, I was doing the best that I have in six years. It felt good to only have mild pain. I had hope that things were getting better. I was prescribed Aloe Vera pills to help thicken my bladder lining.

But the pain returned, and no one knows how to help because there is not enough information out there.

I suffer from endometriosis, but I also have a nerve entrapment, ovarian cysts, pelvic floor dysfunction, chronic IBS with constipation, colon spasms, gastritis and interstitial cystitis.

I suffer from severe pain daily that hinders my way of living.

All my issues stem from endometriosis. It has changed how I live and makes it very hard to be an average twenty-one-year-old.

I, like so many other women, suffer from an illness that gets overlooked every day.

Even when they find out what is wrong, there are barely any ways to help.

Endometriosis is incurable, but I hope one day my story and all the other stories out there will bring awareness and the importance of trying to find a cure for endometriosis. As a designer, my goal is to spread awareness so that women voices can be heard so that we can find a real solution for our real pain. My journey is not over but I keep fighting so that one day my pain will be gone.

*

If you wish to contact Aly, please feel free to email her.

I want to send a special Thank You out to Aly for being brave enough to share her personal story, struggle, and victories with us today.  I am so grateful that you continue to fight and look forward to helping you with your project!    Thank you!!!

a paper that reads Tell Your Story

And if YOU would like to share your story, I’d love to share it.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.