IC Awareness Month

September is IC/BPS Awareness Month

icawarenessfact19

September 19, 2014
by icnjill
0 comments

IC Awareness Daily Fact #19 – The Cost of IC Treatments & Drug Assistance Programs

IC Awareness Fact #19 - Drug Assistance Programs

Drug Assistance Programs Can Help Patients Struggling To Pay For Treatment

There is no doubt that the cost of treating interstitial cystitis and bladder pain syndrome are increasing. Elmiron, the only FDA approved oral medication for IC, can now cost some patients more than $500 per month, if not more. Bladder instillations can cost several hundred dollars per treatment. Surgical therapies, such as Interstim, can cost over $100,000 if not covered by insurance.

There is no shame in not being able to afford these therapies… and, thankfully, a wide variety of self-help strategies that cost virtually nothing can help IC symptoms improve dramatically. Diet modification and the elimination of foods high in acid, caffeine and alcohol is essential. Over The Counter products may help reduce pain (i.e. ProSirona, AZO Urinary Pain Relief Tablets, Cystex, Tiger Balm). Food supplements (i.e. CystoProtek, CystaQ, Cysto Renew, Desert Harvest Aloe) have such a solid track record in the IC world that they are included as a Step One Treatment in the AUA IC Treatment Guidelines.

For patients who have no choice but to use some medication, you may also be eligible for the “Patient Assistance” or “Drug Assistance” programs offered by most pharmaceutical companies. Generally, applicants must be very low income to receive free medication from the companies. The ICN maintains a list of of these programs in our Drug Assistance Program Center.

Strategies For Saving Money on Medication

  1. Talk with your doctor - Ask for medications which are lower in cost, including generic medications when available. If you discover that a new prescription is beyond your budget, call your doctor immediately and ask if any different, less expensive medications, could work instead. Ask the pharmacist too! Be honest about your limitations. There’s no shame in saying that it’s too expensive. We don’t want you to choose between buying food and medications.
  2. Shop Around - Even if you have one favorite pharmacy that you use, it’s still important to contact other pharmacies for their prices, particularly for the more expensive medications such as Elmiron. Pharmacies in the same town may have dramatically different prices. If you find a lower price somewhere else, ask your pharmacist if his store will match that price.
  3. Partial Prescriptions - What could be more frustrating than spending $100 on a medication that, after you try one or two pills, you realize that can’t take due to its side effects. To avoid losing money, ask your pharmacist if he’ll give you a partial prescription first.
  4. Look for Generics - Several stores, such as Walmart and Target, began offering some (but not all) generic medications for just $4. Amitryptiline, for example, may be available at this cost.

How have you saved $$ while using IC therapies? We’d love to hear your suggestions so that we can share them with other patients!

icawarenessfact18

September 18, 2014
by icnjill
0 comments

IC Awareness Daily Fact #18 – Stress and Interstitial Cystitis

iC Awareness Month Daily Fact #18 - Stress and IC

Almost every IC patient learns that stress can exacerbate and/or worsen their IC symptoms. Why? When our body is under stress, the “fight or flight” mechanism is triggered. Our body prepares to fight for its life and/or to flee, even in situations that aren’t life threatening. The heart and lungs accelerate. Digestion slows and stops. Blood vessels become dilated in major muscle groups to prepare to run while blood flow is reduced in other parts of the body, such as the gut. Muscles also become tense, particularly the pelvic floor.

Prolonged stress can cause many physical and emotional effects, such as: headaches, chest pain, fatigue, upset stomach, problems with sleeping AND URINARY PROBLEMS. Psychological effects such as anxiety, restlessness, irritability, anger and depression can occur. The most dangerous aspect of prolonged stress is suppression of the immune system.

For the IC patient, physical stress such as a car accident, exposure to cold weather, prolonged vibration while riding in car, or even a fall can trigger symptoms of frequency, urgency, pressure and/or pain. Patients also report flares after major emotional events, such a death in the family, divorce or stress at work.

Given the reality of stress in our lives, the most successful IC patients build good stress management skills, including: relaxation, exercise, meditation, gentle yoga, classes in stress and anxiety management and so forth.

Additional Resources

icawarenessfact17-200

September 17, 2014
by icnjill
0 comments

IC Awareness Daily Fact #17 – Men With IC

IC Awareness Month Daily Fact #17 - Millions of Men Have IC/BPS

Interstitial Cystitis (IC/BPS) affects men of all ages, from high school students to seniors, air force pilots to Hollywood actors. Many, if not most, have been misdiagnosed with chronic prostatitis, often for years, before they receive a correct diagnosis. You might also be surprised to learn that IC/BPS has been tracked in high numbers in active duty military personnel returning from Iraq & Afghanistan.

In 2013, the results of the RAND epidemiological study determined that up to four million men in the USA have symptoms of IC/BPS, roughly double those diagnosed with prostate disorders. It is real and it is treatable. (Source: Suskind, A., et al. The Prevalence and Overlap of IC/BPS and CP/CPOS in Men. The Journal of Urology, v. 189, no. 1, Jan. 2013, p. 141-145)

Dr. Robert Evans (Wake Forest University, Greensboro NC) has treated men with IC/BPS for the past twenty years and has passionately spoken on their behalf. He said that the majority of men diagnosed with chronic prostatitis may, in fact, be misdiagnosed and mistreated IC patients. He said “If those patients who were told they have prostatitis and didn’t respond to antibiotics or told they have prostatodynia (prostate pain) were studied, the vast majority of them… would have IC.” Sadly, many physicians simply do not consider nor go beyond the prostate to examine the health of the bladder.

Men also face the same obstacles that women do. Some report that they have been treated with hostility by their medical care providers, particularly if they ask for pain relief. Men may also struggle with family criticism and a spouse who may not believe they are in pain. Men can also become lonely and isolated because they may be unwilling to share their struggles with friends and colleagues.

In our 2014, we continue our advocacy for men struggling with IC/BPS. You are not alone. We are here. We care! We’d love to hear your stories.

More Resources For Men With IC/BPS

icawarenessfact16-200

September 16, 2014
by icnjill
0 comments

IC Awareness Daily Fact #17 – IC Makes Sleep Difficult

IC Awareness Month Daily Fact #16 - Sleep is Difficult

IC patients often experience their most uncomfortable symptoms at night when distractions are fewer and they notice their bladder symptoms more. They may feel a constant need to urinate or an uncomfortable sensation of bladder fullness that is very difficult to ignore. Getting up once or twice a night might be manageable but having more frequency can certainly be disruptive and rob a patient of essential rejuvenative sleep. Some patients have even resorted to sleeping in their bathrooms. The good news is that there are many therapies and self-help strategies that may help!

Tips To Improve Sleep Quality

1. Follow the IC Diet.

Night time sleep quality is often a direct reflection of foods eaten during the day. If you’re still drinking coffees, green teas and sodas, this could easily explain your higher pain and/or difficulty in finding sleep. Caffeine and alcohol, in particular, can be irritating to the bladder.

2. Treat your Pain.

Pain and sleeplessness can be an IC patients constant companion. When pain is intense, it is virtually impossible to sleep comfortably and if you don’t sleep well, that can also intensify pain. Thus, breaking the pain cycle is important. Some patients use OTC products, such as AZO Urinary Pain Relief Tablets, to help break the pain. Others find that products such as ProSirona or Tiger Balm can help. But, more intense pain may require stronger pain medication, such as an opiate. If the OTC products aren’t helping, then talk with your doctor about your pain and need for sleep. A referral to a pain specialist may be important.

3. Calm and Relax Your Pelvic Pain

Tight, spasming pelvic floor muscles can certainly trigger night time discomfort. Many patients find some comfort by taking a hot shower before bed and/or using a heating pad to relax the pelvic floor. (Just remember that you should not fall asleep with an electric heating pad on UNLESS it as an automatic shut off timer. Burns can happen.) Using a Guided Relaxation CD as you try to sleep could be very helpful in relaxing the pelvic floor.

Some physicians may suggest using a muscle relaxant, such as Baclofen, Flexeril or Valium to help relax tight muscles.

4. Medications

Some IC treatments can be quite helpful in improving sleep quality, particularly hydroxyzine (Atarax, Vistaril) and amitryptiline (Elavil). Your doctor may also suggest medications that might help improve sleep duration, such as Ambien. These require careful discussion with your physician about the pro’s, con’s and potential interactions with other medications you may be taking.

5. The Basics

Don’t underestimate the power of simple self-help strategies such as:

1. Quitting smoking. Nicotine is a stimulant that can keep you up.
2. Exercise during the day can help improve night time sleep.
3. Eat a light snack before bedtime!
4. Open the window and let a cool breeze in.
5. Lose the cell phones/ipads and games in bed!
6. Try listening to a book on tape or some relaxing music.

Patient Tip: If your sleep quality continues to be poor and/or worsens, please make an appointment with your urologist and/or primary care to share your struggles and/or discuss more treatments. Everyone deserves a good nights sleep!

icawarenessfact15-200

September 15, 2014
by icnjill
0 comments

IC Awareness Month Daily Fact #15 – Disability and IC

IC Awareness Fact #15 - Disability Benefits

Patients with more severe IC who are unable to work may apply for disability benefits in your state our country. In the USA, there are four different types of disability insurance.

Private Disability Insurance

Private Disability Insurance is usually obtained through your employer if they offer disability benefits. In general, private disability insurance kicks in one you meet the criteria for SSA disability (see below). If you are currently working, check your personnel policies and/or any related materials to see if your employer offers disability insurance.

State Disability Insurance (SDI)

State Disability Insurance (SDI) is offered by several US states for residents. SDI is usually a transitional rather than long term disability program, the goal of which is to assist you in returning to work (i.e. after an accident or pregnancy) or to provide benefits during the often lengthy SSA application period. To research whether your state offers disability benefits, check your phone book under State Government Listings and/or contact your local State Representative’s Office.

Social Security Disability Insurance (SSDI)

SSDI is a federally funded program offered by theSocial Security Administration (SSA). Your eligibility for SSDI (and Medicare) depends entirely on your work record and whether you meet SSA’s reported income guidelines. Roughly speaking, you must have worked five of the past ten years. The amount of money you receive under SSDI depends on how much money you paid into the Social Security system.

Supplemental Security Income

Supplemental Security Income (SSI) is a needs based federal program available to individuals with very limited income and few, if any, resources. There are no financial income or resource limitations for SSDI. It is also run by the Social Security Administration.

Patient Tip – One key element of any disability application is evidence or proof of your symptoms. A voiding diary is an excellent piece of evidence to give to your doctor to include in your medical records AND to submit with your claims. Voiding diaries help document your urinary frequency, urgency and pain level.

Patient Tip - Appeal! Appeal! Appeal! While Social Security Disability is notorious for denials at the application stage for ALL disabilities, patients can (and should) appeal their decisions and often win benefits.

Additional Resources:

ICN Disability Resource Center – offers SSA Application Process Tips, An Appeal Success Story, How to Find an Attorney, link to the SSA Ruling on IC/BPS.

icawarenessfact14-200

September 14, 2014
by icnjill
0 comments

IC Awareness Daily Fact #14: Bladder surgery is rarely used for IC/BPS

IC Awareness Daily Fact #14 -

Bladder surgery is rarely considered for the treatment of IC. In the AUA Treatment Guidelines, surgical intervention is classified as a STEP SIX treatment. Using those guidelines, the patient should have first tried and failed treatments from STEP ONE through STEP FIVE, including diet modification, OTC supplements, oral medications, bladder instillations, physical therapy, Hunner’s lesion treatment and some experimental therapies (i.e. botox).

A substitution cystoplasty can help increase bladder capacity by using a section of the bowel to enlarge the bladder. A urinary diversion can bypass the bladder. Bladder removal (aka cystectomy) is only considered in cases where the bladder is severely damaged and/or has minimal bladder capacity.

Patients considering surgery should do a careful review of the pro’s and con’s of the procedure. It’s also important to talk with other patients who have gone through the procedure. The ICN Support Forum offers several discussion areas on all treatments listed above, including bladder removal.

Additional Resources

icawarenessfact13-200

September 13, 2014
by icnjill
0 comments

IC Awareness Daily Fact #13 – The IC and IBS Connection

IC Awareness Fact #13 - IBS & IC Are Related Conditions

Irritable bowel syndrome (IBS) is commonly found in patients who have interstitial cystitis (IC). IBS patients can suffer from chronic diarrhea, chronic constipation and/or a combination of both. One hallmark symptom is intense cramping, often occurring after eating a problem food or beverage containing caffeine, MSG or chocolate. Constipation can also be a side effect of many medications used for IC, particularly pain medications, as well as a symptom that the pelvic floor muscles may be dysfunctional.

PATIENT TIP: To maintain healthy bowel function, it’s important to stay well hydrated and to eat approximately 20 to 24 grams of fiber a day, preferably from fresh foods and veggies. One serving of peas or split pea soup, for example, contain 16 grams of fiber. A pear or apple (preferably the lower acid Fuji or Gala varieties) contain 4 to 5 grams of fiber a day. Click her to view a list of high fiber foods!

Additional Resources

IC Awareness Fact #12 - Hunner's Ulcer Require Treatment

September 12, 2014
by icnjill
0 comments

IC Awareness Daily Fact #12 – Hunner’s Lesions Require Treatment

Hunner's lesions often respond well to treatment but they can recur.

Approximately 5% of IC patients have profound, extremely painful areas of inflammation in the bladder wall known as Hunner’s Lesions (formerly Hunner’s Ulcers). These larger, bleeding wounds in the bladder represent the most severe form of interstitial cystitis and bladder pain syndrome. Some researchers believe that Hunner’s lesions represent a completely different medical condition than typical IC.

Hunner’s lesions must be diagnosed through cystoscopy, often utilizing hydrodistention. Unfortunately, many patients don’t realize that Hunner’s ulcers require separate bladder wall specific treatment.

PATIENT TIP – If you are going to have a hydrodistention, it’s important to talk with your doctor about how they will be treating any ulcers they find. To NOT treat an ulcer is a lost opportunity that could result in long periods of pain and discomfort and require additional hydrodistention.

Step Three of the AUA Treatment Guidelines outline current treatments for Hunner’s lesions including: fulguration, laser therapy and/or the injection of triamcinolone into the center of the ulcer.

Patients struggling with Hunner lesion in the USA & Canada may be able to participate in a new clinical trial. LiRIS is a new medical device that delivers lidocaine into the bladder for a two week period. In their first study for pain, the researchers found that the ulcers also responded favorably to treatment. A new clinical trial testing the effectiveness of LiRIS in the treatment of Hunner’s Ulcers was launched in Fall 2013. Read more about the trial!

Watch a Hunner’s Lesion Video

Dr. Tomohiro Ueda (Japan) and the AUA released the video below, showing what a Hunner’s lesion looks like and how it responds during a hydrodistention procedure.

Your Experience With Ulcers

Do you have Ulcers? How were they treated? Did treatment help?? Have they recurred?? Please share your story below or on our Facebook page.

IC Awareness Daily Fact #11

September 11, 2014
by icnjill
0 comments

IC Awareness Daily Fact #11 – Intimacy and Sex Can Be Painful

icawarenessfact11

Interstitial cystitis patients may find intimacy uncomfortable at times. Men with IC may feel discomfort at the moment of ejaculation while women report their most intense discomfort in the 24 hours after sex. Why? Well, it’s primarily about the pelvic floor. Men experience their strongest pelvic floor contraction when they ejaculate while women experience about 24 to 36 hours of milder, yet longer pelvic floor contractions following intercourse.

Consider as well that the bladder itself may be more tender and, thus, won’t respond well to repeated, prolonged thrusting. One technique that can be very useful is the use of “tantric sex” where your goal is to get your partner to that point right before orgasm and then keep them there for as long as you can using gentle touch and so forth. Thus, when intercourse does happen, it’s often very short yet very VERY satisfying.

Some couples also enjoy using a male toy, such as the TENGA FlipHole or TENGA 3D Sleeves, for those moments when intercourse may be too uncomfortable. These are a lovely alternative to intercourse that can help a couple maintain their intimacy, affection and laughter in the bedroom.

Having an “after sex” routine to reduce muscle tension is also quite helpful including using heat, warm bathes and, possibly, an oral muscle relaxant, such as Baclofen. Vaginal valium suppositories are quite popular as well and may help reduce painful pelvic floor spasms.

More Resources That Can Help

  • ICN Guide for Romance and Sexuality offers several tips on how to make intimacy more comfortable
  • The Proactive Patient: Managing IC & Related Conditions offers fabulous chapters on sex and a section for the partners of IC patients. Written by husband and wife team, Andrew and Gaye Sandler
  • Secret Suffering – How Women’s Sexual and Pelvic Pain Affects Their Relationships – Patient stories, a husbands point of view, a same sex couples experience with pelvic pain, the dilemma confronting single women with chronic pain, faith and the poignant story of two men who experience sexual pain. They talk about the difficulties working with the medical community but the great hope promised by a new, far more accepting medical paradigm of chronic pelvic and sexual pain. The appendix offers 64 tips to relieve sexual and pelvic pain! (Book is sold out but has been reordered)
IC Awareness Month Daily Fact #10

September 10, 2014
by icnjill
0 comments

IC Awareness Daily Fact #10 – Children With IC/BPS Face Many Struggles

IC Awareness Daily Fact #10

(By Jill Heidi Osborne, ICN President) It’s hard enough to face pelvic pain as an adult, but can you imagine being a young child who can’t sleep through the night, can’t sit through class and who may not be believed by their families or doctors? Children as young as three years old have been diagnosed with IC. They (and their parents) have have a difficult road to travel because young children often can’t verbalize where they hurt or what their symptoms are. They certainly cannot advocate for themselves and are often disappointed by adults who minimize their struggles.

I was attending my first National Institutes of Health meeting back in the mid 1990′s when one IC researcher, in fact the only researcher who was actively studying children with IC at the time, had the audacity to say that children can’t feel bladder pain to an audience of over one hundred other medical professionals. Astounded, I was the first to stand up and challenge that statement, sharing the story of two young girls with IC in Utah who were in so much pain that they asked their mom if they could go to heaven. True story! I was thrilled to see Dr. C. Lowell Parsons standing behind me who then affirmed exactly what I said. Let me be perfectly clear. Children do feel bladder pain!!

But it’s hard when there’s no pediatric urologist or researcher in the USA (and perhaps in the world) who has taken a strong interest in treating IC in children today. As a result, children are often treated by pediatricians with no formal training about IC and/or who might make blanket statements like “he’ll just grow out of this.” Worse, we don’t have diagnostic and treatment guidelines that have been adapted for a child’s size and body.

We also can’t forget the struggles that a teenager with IC can face, including something as simple as restroom access at school. Some schools lock bathrooms and, worse, give students detention if they need to use the restroom in the middle of class. Yes, that really has happened to IC patients. Throw in challenges with food, making friends, enjoying social outings and, of course, dating and life becomes very complex for teens who might already feel overloaded.

It’s important that we work together to help improve the lives of children with IC. One of the first things you can do is share the name of any pediatricians and/or urologists who have a strong interest in treating IC and/or pelvic pain in a pediatric population. Click here for more info on making a recommendation.

Did your IC symptoms begin in Childhood?

We’d like to hear your story! What struggles did you face? Were you believed? Did you receive any treatment?? Were you shown kindness? What obstacles did you face?? What helped you in that journey? Please share your story with us!