The Hidden Costs of IC/BPS - The toll an 'invisible condition' can take isn't always easy to see - Interstitial Cystitis Association
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Fall 2022 The Hidden Costs of IC/BPS The toll an ‘invisible condition’ can take isn’t always easy to see.
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and education to ensure early diagnosis and optimal care with dignity for people affected by IC/BPS.
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IN THIS ISSUE
Editorial Staff
Lee K. Lowery, MPA, CAE 2 ICA News
Publisher
Mark Toner Lawrence Licup
Editor Graphic Designer
8 The Costs of Care
Board of Directors Medical care for IC/BPS is costly, but hidden
Board Chair Vice Chair
behind the averages are wide variations in costs.
Laura Santurri, PhD, MPH, CPH Claudia King
Treasurer 10 Time to Diagnosis
Richard C. Lufkin Lengthy and costly delays remain the norm,
Immediate Past Chair though there's reason for hope.
Michael Greenwell
Natasha Boswell
Members
Shelley Kardon
14 For Fierce Self Compassion,
Amber Carter-Frauenhofer Tacha Kasper, MA, LMFT A Little MOXIE Can Help
Sarah Cojocaru Theda Khrestin
Combat your inner bully with a fierce mindset shift.
Nicole Cozean, PT, DPT, WCS, CSCS David Klumpp, PhD
Janelle Faba Dan Vickery, MBA, PhD
Eric Zarnikow
18 Treatment Teams:
1
Founder and President Emeritus
Vicki Ratner, MD
It Takes a Village
A multimodal approach to treating IC/BPS
symptoms requires multiple healthcare providers.
ICA Staff
Lee K. Lowery, MPA, CAE Jenlene Nowak
Executive Director Director of Giving 19 Work with IC/BPS:
Nicole Mehall Shaquala Brooks
Senior Manager of
Communications and Content
Coordinator, Association Services Lost Wages, Lost Careers
For those living with IC/BPS, the largest costs often
Magda Halim
Coordinator, Association Services come in the workplace—and too often, drive those
with the most severe symptoms out of it completely.
19 Beyond the Numbers:
Real-Life Impacts
21 Voices of Hope
7918 Jones Branch Drive, Suite 300 | McLean, VA 22102 'I Won't Let it Beat Me'
ichelp.org | ICAmail@ichelp.org
24 ICA Angel Society
25 Five Questions to Ask
Ways to find the right mental health app.
ICA News
ICA Launches New Website
2 The ICA is thrilled to announce the launch of our new website
at www.ichelp.org. We hope you find our new website to be
more user-friendly and easier to navigate, with access to
resources and information about IC/BPS, as well as ways to
get involved. Check back frequently as we plan to make con-
tinuous updates to the site.
ICA’s Fall Step Up for IC/BPS Awareness and Education Event Raises Over $22,000
The ICA 2022 Virtual Fall Fundraiser - Step Up for IC/ We would like to extend our gratitude to the sponsors who
BPS Awareness and Educational event that took place helped make the 2022 Fall Fundraising, Awareness and
online—and everywhere—September 19-24, raised over Educational event a success:
$22,000 for more IC/BPS awareness, better treatments, • Algonot CystoProtek
and an eventual cure for IC/BPS. • Desert Harvest
• West Coast Mint
And the IC/BPS professionals who provided expert
educational content:
• Dr. Robert Moldwin - Live Q&A Expert Session
• Dr. Nicole Cozean - Pelvic Floor Physical Therapy
• Tacha Kasper, MA, LMFT - Handling the Emotional &
Mental Impact of Living with IC/BPS
• Dr. Reza Sharif and Heather Florio, Desert Harvest CEO -
Over 180 participants comprised of IC/BPS patients,
CBD Preclinical Study
their families and friends, healthcare providers, and volun-
• Dr. Tony Buffington - New Science of Pain and IC
teers participated in the event. Participants received infor- • Dr. Alexandra Milspaw - Intimacy and IC
mation on the updated American Urological Association
guidelines for IC/BPS, sexual health, pelvic floor physical Watch videos of educational content at bit.ly/ICAExpertVids.
2 therapy, health insurance, and other video offerings, all Additionally, we want to thank all our individual and team
while working to raise awareness and funds for better IC/ fundraisers—without your support, dedication, and par-
BPS care everywhere. ticipation, we would not have been able to raise awareness
For the third year running, participants came together for IC/BPS and the IC/BPS community. Thanks also to
virtually for the annual Step Up for IC/BPS—ICA Aware- Desert Harvest, Algonot CystoProtek, PelvicSanity, and
ness Walk, with the goals of taking 2.5 million steps and West Coast Mint for donating recognition awards.
raising $25,000 for the ICA. A VERY special thank you to Participants who shared their thoughts during the week-
both the Toth Family and SPX Corporation for matching long event said:
individual donations up to $5,000 each to triple the impact • “Thanks so much! It was a wonderful event.”
for the third consecutive year. Visit ichelp.org/ • “Thank you for all of the great information that you put out."
ica-2022-fall-event-expert-interviews/. • “Thank you to this helpful organization, which I’ve been a
part of for 30 years!”
It’s not too late to support the 2022 Virtual Fall Fundraiser - Step Up for IC/BPS Awareness and Educational event!
If you found value in our offerings, please make a donation today. By doing so, you can help ensure that the ICA pro-
vides more valuable educational events in the future. Visit bit.ly/ICAStepUp22.
IC/BPS Goes Viral on TikTok
“As painful as it is, it’s so, so comforting to know other women have this.”
Breanne Rodgers has more than 450,000 followers on the TikTok viral video platform, so when
the 21-year-old Alabamian posted a video from her car about her yearlong experience trying to
get diagnosed after having “constant UTIs,” more than 1.1 million people wound up viewing it.
Hundreds of other IC/BPS patients also responded with advice on diet and support. “As painful
as it is, it’s so, so comforting to know other women have this,” one said.
View Rodgers’ video at bit.ly/TikTok-ICBPS, or read an article about her experience
at yhoo.it/3wJMFSF.
ICA UPDATE Fall 2022
Take Charge of
IC/BPS With
Social Media
Social media is a way to connect with others—and to raise awareness of IC/BPS. ICA represents the IC/BPS
community on every major social media platform, but we need your help to amplify the message, and to
support others through participating in online support groups. Help take charge of IC/BPS on…
1. Facebook
Follow ICA at facebook.com/InterstitialCystitisAssociation or
by searching for “Interstitial Cystitis Association” and clicking
the “Follow” near the top of the page. Our Facebook page
provides information about ICA and ways to get involved
with the association, participate in research studies,
and more! Help spread the word by liking and sharing
posts with your own Facebook friends.
2. Twitter
Visit ICA’s Twitter account at twitter.com/ichelp to follow ICA and receive the latest updates.
Like Facebook, you can help spread the word by liking and retweeting posts to your own followers.
3. Instagram
ICA’s presence on the photo-heavy social media network is a way to see some of the faces of those
involved in IC/BPS treatment, research, and advocacy—and yet another way to share quick bits of
information with your followers. Visit instagram.com/icahelp/, follow us and share our posts with
your own followers!
4. YouTube
Visit ICA’s channel at youtube.com/user/ICHelp to access a library of
videos made by IC/BPS practitioners and researchers, ICA members,
and more! Videos include interviews with researchers, strategies to
build self-efficacy, and demonstrations of physical therapy, trauma-
informed yoga, and more.
5. Online Support Communities
Two highly active online communities provide opportunities for those
with IC/BPS, their families, and their caregivers to support, share
advice, or simply to reach out and communicate with each other.
One is moderated by ICA on Facebook (facebook.com/groups/
ICBPSGroup/ or search Facebook for Interstitial Cystitis Association
IC/BPS Support Group), and the other is moderated by Inspire at
inspire.com/groups/interstitial-cystitis-association/.ICA News
ICA’s Self-Care Adventure Links
The ICA's Spring into Summer Self-Care Adventure was 4
so helpful to the people who participated that we are shar-
ing it with the entire IC/BPS community!
Here is a complete list of the offerings from the event,
a free virtual and interactive five-day self-care journey,
during which participants earned points by completing self-
care activities and raising critical funds and awareness about
IC/BPS. The activities can continue to be accessed online:
PT Self-Treatment at Home: Dr. Nicole Cozean
• To access the interview, visit youtu.be/rPU8PI7rD70
Desert Harvest: Research Interview with
Dr. Lenore Ackerman & Heather Florio
• To access the interview, visit youtu.be/niHEjvoLmW4 Participate in Text-Based IC/BPS Clinical Trial
• See p. 5 for more details.
Inspire Online Support Community: Bladder Health Survey
• See p. 3, or visit www.ichelp.org/researchers-need-you/ Join ICA's Online Support Groups
for more details. • Join one of ICA's Online Support Groups!
www.ichelp.org/onlinesupportcommunity
Trauma-Informed Yoga Class with Mia Tarduno
• To access the interview, visit youtu.be/gX_kcA6TSgY Mindful Journaling: Share Your Thoughts
• Thanks to our friends at Mindful, you can take a step toward
Living Well with IC/BPS: The Results of the IC Hope Study
starting your own mindful journaling practice. To learn more,
• To access the interview, visit bit.ly/ICHopeStudy
visit bit.ly/MJournaling
ICA Advocates in Action ICA, Black Health Matters Collaborate on
IC/BPS Research Study
4 ICA and Black Health Matters (BHM) collaborated on an
IC/BPS research study led by Inspire and Boston Children’s
Hospital (BCH). The survey, funded by the Centers for Dis-
ease Control and Prevention (CDC), will help to identify
symptoms and other conditions that are associated
with IC/BPS.
“Underrepresented minorities continue to be
ICA continues to be the voice for the IC/BPS commu- highly underrepresented in research studies.”
nity on Capitol Hill! In August, ICA Immediate Past
Chair Mike Greenwell, ICA Chair Laura Santurri, ICA The collaboration reflects the fact that underrepresented
Executive Director Lee Lowery, and ICA’s Washington minorities continue to be highly underrepresented in research
representative met with offices of six Senate Labor, studies. ICA, BHM, Inspire, and Boston Children's Hospi-
Health, and Human Services Subcommittee members. tal (BCH) encouraged these groups to participate
The meetings took place ahead of the subcommittee’s in the survey.
bill release to push for increased IC/BPS funding with
the Centers for Disease Control and Prevention
(CDC). Meetings occurred with the following offices:
IC/BPS Community Steps Up on
Giving Tuesday with you!
Sen. Joe Manchin (D-WV) Sen. Jeanne Shaheen (D-NH)
Together, the IC/BPS community raised more than $7,420
Sen. Tammy Baldwin (D-WI) Sen. Brian Schatz (D-HI)
on Giving Tuesday, November 29.
Sen. Marco Rubio (R-FL) Sen. Dick Durbin (D-IL)
Thank you for giving to the ICA so that the next person
diagnosed with IC/BPS can receive the support and early
diagnosis they deserve.
If you want to support the ICA’s mission, there’s still time
to donate at support.ichelp.org/gt2022.
ICA UPDATE Fall 2022ICA News
4th Annual Cartersville, GA Step Up for IC/BPS Walk
The ICA would like to thank Dr. Jeffrey Proctor and his Shout out to our top individual fundraiser Aubrey Wil-
team at Georgia Urology for hosting the fourth annual Car- liamson who raised $155 and to our top team fundraiser
tersville, GA Step Up for IC/BPS – ICA Awareness Walk The Stream Team that raised $1,000 – we are so grateful
on Saturday, September 24 at Dellinger Park. Thanks to for your support!
dedicated and passionate participants and donors, the event
raised over $4,700.
We would like to extend our gratitude to the event
sponsors who helped make the 2022 awareness walk
event a success:
• Georgia Urology and Dr. Jeffrey Proctor
• West Coast Mint
• 180° Medical
Meet ‘James’: A Personal Bladder Health Story
“I switched focus from ‘dealing with it’ to ‘figuring it out’
and found a new medical team to finally get answers.”
The survey above is one example of addressing the underrepresentation of minori-
ties in research studies. To that end, “James” (real name changed for privacy pur-
poses) shared his IC/BPS story with Black Health Matters and helped increase
awareness about IC/BPS within the Black community. Read some highlights of James’s
A college recruiter, it took James more than a decade to be diagnosed with IC/ conversation with Black Health 5
BPS. “After years of continued pain, I had to prioritize my health. I switched focus Matters at bit.ly/BHM-IC.
from ‘dealing with it’ to ‘figuring it out’ and found a new medical team to finally get
answers,” he told Black Health Matters.
Participate in ERICA: A Text-Based IC/BPS Clinical Trial
If you have IC/BPS, University of Pennsylvania's Division of Urogynecology is con-
ducting a research study to test ERICA, a smartphone-based program that teaches
patients how to self-manage their symptoms.
Short for Educational Remote IC/BPS Aide, ERICA delivers video modules on
evidence-based, holistic self-care strategies and provides support through check-ins
that include an option to talk to a clinician.
In this completely remote study, you will receive video treatment modules and To learn more, watch an intro-
check-in messages via a secure texting platform over six weeks (maximum three texts ductory video at youtu.be/
per week). If you are a woman over 18, diagnosed with IC/BPS, have a smartphone UhBaiOtgMog.
and interested in evidence-based, holistic ways to manage your symptoms, please
text or email Lisa, the research coordinator, during business hours at 267-600-2484
or Yelizaveta.Borodyanskaya@pennmedicine.upenn.edu.
ICA Seeking Voices of Hope
Share your story of hope and success with the community and be an
inspiration to others who are living with IC/BPS! We will be highlight-
ing stories of encouragement and hope—written by you. Send your story
to us and we’ll post it on the ICA’s Voices of Hope blog.
Stories of hope, encouragement, and successful living with IC/BPS
are accepted from patients and healthcare providers, as well as family
and friends of IC/BPS patients. To submit, visit bit.ly/IC-VOH.
ICA UPDATE Fall 2022The Hidden Costs
6
of IC/BPS
The toll an ‘invisible condition’
can take isn’t always easy to see.
By Mark Toner
ICA UPDATE Fall 2022Interstitial cystitis/bladder pain syndrome (IC/BPS) is an invis-
ible condition in more ways than one. As a diagnosis of exclu- Millions Impacted,
sion, it remains difficult to diagnose. With few visible
symptoms, it’s also not readily apparent to those surrounding
Untold More Undiagnosed
the person suffering from IC/BPS. As one patient notes, “peo-
ple do not understand what they cannot see and feel.” 3.5 - 7.9 Million
As with the growing prevalence of chronic pain conditions women over 18 in the U.S.
of all types, IC/BPS also carries significant direct and indirect have IC/BPS symptoms.
costs for patients, their families, their employers, and the coun-
try as a whole. Too often these costs, like the condition itself, 1 - 4 Million
go unnoticed. men in the U.S. have IC/BPS symptoms.
“I have not been able to move on with my career due to IC/
BPS,” one patient says. “It has greatly inhibited my ability to
2.7 - 6.5%
get a new job. It has stopped me looking for a relationship.
The fatigue and discomfort that come with it are debilitating
of women have symptoms consistent
and really wear me down.” with a diagnosis of IC/BPS.
The most recent American Urological Association treatment
guidelines for IC/BPS cites updated research on the impact of 2.9 - 4.2%
the condition, with as many as 11.9 million Americans believed of men have symptoms of IC/BPS;
to suffer from its symptoms. ICA Update followed up with a 1.8 percent have symptoms consistent
survey in late summer 2022 to understand the costs of seeking with CP/CPPS. Together, these
a diagnosis, ongoing treatment, and maintaining quality of findings—and overlap of symptoms—
life. Nearly 350 patients responded, offering insights into the
suggest that the prevalence of
costs—direct, indirect, and tangential—of living with IC/BPS.
“The loss of my income, added to the amount [of health- IC/BPS in men may be similar to
care costs], is not what we envisioned for our family,” one sur- women, just more undiagnosed.
vey respondent says. “I feel the brunt of the stress from this, 7
but to be honest I know that my husband does too but would 40
never vocalize it because he knows how hard it is already for Median age of IC/BPS patients
me to endure. “
Who’s missing?
9.7%
of women with symptoms are diagnosed with IC/BPS.
Those who are diagnosed with IC/BPS are:
90% Female 94%White
suggesting that many men— and minorities of both genders—remain undiagnosed.
Source: ICA, AUA IC/BPS guideline 2022
The Costs of Chronic Pain
$560 - $635 Billion
The national cost of all chronic pain conditions, including healthcare costs and
lost productivity—higher than heart disease, cancer, and diabetes.
Source: Journal of Pain, 2012
ICA UPDATE Fall 2022The Costs of Care IC/BPS patients pay
Medical care for IC/BPS is costly, but as with other conditions, whether
patients have insurance—and what that insurance covers—makes a mas- 2.0 - 2.4x
sive difference. But even those with insurance or Medicare find themselves Higher healthcare costs, on average,
paying significant costs for treatment, medication, and other expenses than others their own age
associated with care.
“After insurance and all of the pre-tax dollars (many thousands) in the $2,506
healthcare spending account (HSA), my spouse and I still spend thou- The average annual cost of
sands of dollars out of pocket every year on my health costs,” one survey IC/BPS care
respondent says.
The ICA Update survey found that on average, respondents pay $2,506 $100 - $37,000
out of pocket for IC/BPS care annually. Over their lifetimes, those costs Lowest/highest reported annual
add up—to $30,457, on average, among the survey respondents who tal- IC/BPS care costs
lied overall costs.
While these results are only from those who chose to respond to ques-
$30,457
tions about cost in the ICA Update survey and may not be representative Average lifetime cost of IC/BPS care
of everyone who has the condition, they are in line with earlier research $1,200 - $150,000
— and significantly less than one study cited in the AUA’s IC/BPS guide- Lowest/highest reported lifetime
line that suggests that annual health costs for IC/BPS patients are 2 to
IC/BPS care costs
2.4 times higher than people of similar ages.
Source: ICA Survey 2022; 182 respondents provided
estimates of annual costs, 32 of lifetime costs
Wide Variations —
and Extra Expenses
Hidden behind the averages are wide variations in costs—from $100 to Healthcare Expenses
8 $37,000 annually, according to survey respondents. Even with health • Medication
insurance, many respondents said common IC/BPS treatments and med-
ications are not covered by their policies. Among them are Interstim • Supplements (aloe vera, etc.)
devices, instillations, Botox and ozone treatments, and Elmiron, which • Co-pays
remains the only FDA-approved medication to treat IC/BPS but has been • Doctor visits
removed from some insurers’ formulary lists of covered medications or
• Physical therapy
made more expensive to patients by being placed in more expensive pric-
ing tiers. • Counseling/therapy
“Elmiron was classified as a Tier 3 drug, so my copay was $90 for a • Procedures (Botox, Interstim,
three-month supply. Then it jumped to a Tier 4 which was close to $200 instillations, etc.)
for a three-month supply. And now it is a Tier 5,” one respondent says. • Equipment (single-use
“I have managed over the last five years to cut my intake down from three catheters, incontinence gear)
pills a day to two pills a day, then one, then recently none.” • Diet
Other respondents cited specialist healthcare providers who are out of
network or don’t bill insurance. And still others said they spent more on • Clothing
health insurance to ensure adequate coverage. ”We pay out-of-pocket • Hotel/travel costs for treatment
about $2,000 a month for good healthcare insurance,” one respondent
said. “Without my condition, we could get away with cheaper
insurance.”
And then there are the extra costs involved with managing the condi- Breakdown of Costs
tion, which include diet, clothing, and other necessities for managing
pain and preventing flares. “Not only do I have to pay for medication and $3,463 Outpatient medical services
appointments, but ‘safe’ food is more expensive, all my clothes have to
have elastic waistbands, I have to wear specific shoes, and I have pads to $1,572 Prescription medications
put on seats or standing spots in the house, etc.,” one respondent said. $1,579 Other
Source: 2022 AUA IC/BPS guideline
ICA UPDATE Fall 20229 ICA UPDATE Fall 2022
In their own words ”My copay for bladder Botox and pudendal nerve
injections under a general anesthesia is over $1,000.
It's the first treatment that has helped manage the
”I have had IC/BPS since 1982 and can't even guess pain, so I'll be doing this every eight weeks until my
how much I've spent during 40 years. private insurance cancels from losing my job.
I know that it almost bankrupted me several times.” Medicaid doesn't cover the treatment, but in 14 years
it's the only treatment that has worked.”
“The [provider] that [my doctor] wants me to see is
not in network with my health insurance. [The doctor] ”I will have to let my medical insurance lapse this year
had given me a prescription for an outside pharmacy as I can no longer afford the premiums.”
that does not accept insurance. The cream was
something that they make and mix in a lab and ”Every year we have to plan for hitting our deductible
was over $100.00. I couldn’t afford to get it, early in the year, and then max out of pocket for
so I never got it.” expenses by the end of the year.”
”Over the course of time of many years, I spent at
least one-third of my income [as a psychologist]
on this and other autoimmune problems.”
Time to Diagnosis:
Lengthy and Costly Delays
Another clear—and costly—burden for those with IC/BPS involves the time it takes to be successfully diagnosed with the con-
dition. For many, the journey to an IC/BPS diagnosis involves visiting multiple healthcare providers and being prescribed a wide
range of medication or treatments before receiving an accurate diagnosis.
Research has shown that it takes the typical IC/BPS patient between 3 and 7 years to receive an accurate diagnosis. Respon-
10 dents to the ICA Update survey fell in the middle of this range, reporting an average time of just over five years and seven months
for diagnosis. What happens during that time can be costly—in both financial and physical terms.
Many respondents reported being prescribed endless cycles of antibiotics for urinary tract infections, arguably the most com-
mon IC/BPS misdiagnosis. “I lost count of how often I was told I didn't have a unitary tract infection but they would still give
me antibiotics,” one said. A few spoke to more significant treatments—and lingering questions.
“My gyno said my pain was ovary cysts and endometriosis, so she recommended a full hysterectomy,” one respondent said.
“Had that done and pain was still there. Then I went to see a urogynecologist and she diagnosed [IC/BPS]. So now I wonder if
the full hysterectomy was necessary.”
Others reported traveling to visit IC/BPS specialists, resulting in additional costs and time for treatment. “I was ultimately
diagnosed by a specialist who lived in another state. Having appointments there required me to take off work, my spouse to take
off work, an overnight stay, and a lot of travel. The cost of this disease is high, in many ways.”
Hope for Improvement
Above all, it is time that takes a toll on IC/BPS patients. One survey respondent reported waiting 47 years for a diagnosis—
“I had IC/BPS at age 7. Received the diagnosis at age 54.” However, the good news is such cases may be becoming outliers.
After years of advocacy and education by ICA and others focused on building understanding of IC/BPS among healthcare
providers, more than one-third (36 percent) of survey respondents were diagnosed in less than one year. Nearly three quarters
(74 percent) were diagnosed in under five years, suggesting that over time, awareness is gradually translating to more
timely treatment.
Numerous respondents reported being diagnosed in six months or less; one said the diagnosis came “immediately on my very
first visit.” While that remains unusual—only 8.5 percent of respondents said the first doctor they saw made an IC/BPS diag-
nosis—the key for many survey respondents who reported a quick diagnosis was visiting a specialist—most commonly a urogy-
necologist—who was aware of IC/BPS.
However, unlike other conditions an accurate diagnosis does not result in an immediately effective treatment plan. As one
respondent says, “It took just over a year, and that was two and a half years ago. I am worse now than I was then!”
ICA UPDATE Fall 2022The Interstitial Cystitis Association (ICA) makes no claims, promises, or guarantees about the accuracy of paid advertisements or the efficacy of the products represented. The ICA does not endorse any products.
Paths to Diagnosis: Time to Diagnosis
Two Examples 3-7 Years
Historic research
1. Primary care
(ruled out UTI) ER (ultrasound and CT scan) 5 Years 7 Months
gynecologist (ruled out endometrial cancer, Average of ICA Update survey respondents
yeast infection, and UTI)
urogynecologist (cytoscopy and diagnosis) 4.5
Average number of doctors visited
2. OB-GYN before diagnosis
(hysterectomy) neurologist
pain management 8.5%
psychiatrist (“it’s all in your head!”) Received a diagnosis from the
OB-GYN urologist first doctor they saw
58%
Visited 3 or fewer doctors before diagnosis
In their own words
“Half of this time was spent waiting and scared 36% less than 1 year
because it takes too long to get into a urologist in my 38% 1-5 years
area.”
10% 5-10 years
“Being a man, no one thought I could have IC/BPS.” 10% 10-20 years
“Since I had HMO insurance, I rarely see the same 6% 20+ years
doctor twice, but they did take note of my large file
due to numerous weekly visits but still wouldn't refer
12 me to a urologist. It took 17 years of suffering,
starting at the age of 17, before I finally got a referral.”
Source: ICA Survey 2022; 309 respondents provided
time to diagnosis, 314 provided number of doctors
“Years later, I have doctors who do not believe
my diagnosis!”
“After returning to his office in tears because there
“The urologist knew and wanted to test, but was no treatment for me, he told me I probably had
insurance required other tests to rule out UTIs, bladder cancer and attempted to do a bladder biopsy
kidney stones, etc.” in the office with no anesthesia. He couldn't get a
good sample so I waited several weeks to be
”My first urologist blamed what was happening to scheduled for a biopsy in the hospital and a couple
me on my husband and said he didn't believe in weeks after that to learn it was negative. That was it!
interstitial cystitis. After almost two years, his nurses I researched gyn & urology doctors in Sacramento,
finally gave me my files (without the doctor's and Eureka! I found a urogynecology practice that in
knowledge) and recommended a good gynecologist one visit, made my life much better.... Finding this
who investigated me for endometriosis (I didn't have practice....was a total game changer for me.”
it), so he then sent me to an IC/BPS specialist.”
”It didn't take me as long as others, as I am a medical
“Still waiting to see a urologist that will transcriptionist and transcribed for several urologists,
believe me and give me a diagnosis.” so I sort of diagnosed myself from reading the
symptoms of other patients and one of the urologists
confirmed it as soon as I asked about it and was
“I wasted many years with worthless oral medication. examined. But most people are not that lucky and I'm
Much needless suffering because I have a ‘women’s pretty sure I had IC/BPS most of my life, just was
disease’ that urologists don’t focus on or misdiagnosed as bladder infections for 20 years,
know how to treat.” starting at the age of 10.“
”I’m still not formally diagnosed due to not having the ”Although my family doctor did not know much about
Hunner’s ulcers, therefore nothing can be seen so all IC/BPS, he was open to learning and supporting me. I
my doctors think I am crazy. I’ve been showing advocated for my health every step of the way. I did
symptoms since I was 18, and I’m about to turn 21 research and knocked on every door that I could. That
now.” was the only reason I was successful in getting help.”
ICA UPDATE Fall 2022The Interstitial Cystitis Association (ICA) makes no claims, promises, or guarantees about the accuracy of paid advertisements or the efficacy of the products represented. The ICA does not endorse any products.
For Fierce Self Compassion, A Little MOXIE Can Help Combat your inner bully with a fierce mindset shift. By Tacha Kasper, MA, LMFT
Most people have dealt with some sort of negativity their entire lives. Negative experiences often start during childhood and
continue throughout our adult lives. This is a normal part of life that we all deal with. Too often though, our own thoughts
become negative as well. Even more troubling is that at a young age we start talking to ourselves in a negative manner. This neg-
ative self-talk is one of the most limiting behaviors we deal with. This negative self-talk is often referred to as our “inner bully,”
and we all have one. However, it doesn’t make anyone feel better about themselves or achieve more in life. The good news is that
we also have this great thing called neuroplasticity—the ability for the brain to change its ways—and we can learn the skills to
overcome having a nasty inner bully.
When we are dealing with any type of chronic health condition, including Interstitial Cystitis/Bladder Pain Syndrome (IC/
BPS), negative thinking can easily become a big part of our mindset. I’m a psychotherapist, cancer survivor, and IC/BPS patient,
and at times I still have to work at quieting my inner bully, especially when my pain is high. If you’ve read my previous article
about our stress response, you know that how our body interprets threats and how our nervous system responds are directly
related to how we experience our symptoms. The same holds true for our inner bully.
If we let our inner bully go unchecked and reign free, our system will experience this as a constant threat—but from the inside.
We can start to feel pretty hopeless, anxious, and depressed. Our inner bully likes to tell us things like we’re worthless, a burden
to those around us, ugly, incompetent, lazy, unlovable, and on and on. We often say things to ourselves that we would never say
to another living person. We can be downright abusive to ourselves. We are so used to our inner bully that we usually don’t really
pay attention to just how much background commentary is happening each and every day. We don’t need to get into the psy-
chology and neuroscience about how the inner bully gets developed, but suffice it to say that every human has one.
BATTLING BACK modalities that are very effective. The American Urological
People often scoff when they hear the words “mantras,” but Association lists “behavioral and non-pharmacological treat- 15
the truth is that we are all already doing mantras each and every ments” as an integral part of a bio-psycho-social (whole per-
day—it’s just that 98% of them are negative, voiced by our son) treatment for IC/BPS, and our mental wellbeing is a key
inner bully (see the box on p. 17 for a way to develop more part of this holistic approach.
positive mantras).
The first step to battling our inner bully is to identify it, A LITTLE MOXIE
build awareness of all that it is saying to us and how it makes Here’s an effective way of making this mindset change. Think
us feel, and then begin to clap back and change it. I know of your inner bully and create a “character” of what this bully
you’re thinking that’s easier said than done, and it’s true—but looks like. Disney has done a great job of this in its recent mov-
please trust me and keep reading. It takes practice, lots of prac- ies—consider Bruno from the 2021 animated feature Encanto.
tice and constant vigilance, but it’s very achievable. So let’s use Bruno for this example. Now we want to create an
All the clients I work with have some sort of chronic illness “inner cheerleader”—a part of you and voice inside you that
and/or pain. The first place we start is always our mindset— can go head to head with Bruno. I frame the inner cheerleader
our inner world. Here’s the thing: we don’t learn these skills as part of fierce self-compassion.
in school or work, so we believe that if we think it then it must Often people have a hard time creating this character, so I
be true. But that’s not always the case. We all have beliefs about created a character called MOXIE the Leopard™, along with
ourselves that are negative and are considered maladaptive— an easy to remember acronym for people to use. I’ve taught
meaning they don’t work for us anymore. this framework to kids and adults, and it’s always amazing to
You have a lot more control than you think—you just need see the transformation that happens. Leopards are strong and
some skills. Much of this is based on cognitive behavioral ther- nurturing, as well as fierce—they won’t back down while pro-
apy (CBT), which links our thoughts, feelings, and behaviors tecting their territory. That’s exactly what we need to be able
and identifies how we can move away from any of them that to combat Bruno. Of course, you can create your own charac-
no longer serve us. There’s even a specific protocol for chronic ter, but for now you can use MOXIE the Leopard to get you
pain/illness, CBT-CP, which is one of many psychotherapeutic started. Here's what MOXIE’s name means:
ICA UPDATE Fall 2022M O X I E
Me First Observe Examine Intention Explore
M—ME FIRST X—EXAMINE
This is the same concept that airlines use when oxygen This is where we get to keep ourselves humble and learning. We examine whether
is needed—you put the oxygen mask on yourself first, what Bruno has said is helpful or just tearing us down. Science has taught us that
and then others. This is not selfish. It is necessary to nobody gets motivated by negativity. The contrary is true—we learn best by posi-
be able to help other people. As a mother, I used to tive reinforcement. Imagine treating the people you love with the same kind of
find this counterintuitive—I want to put the masks on things you are saying to yourself? They aren’t going to respond well. Actually, this
my family first—but I’ve learned the hard way that this is often one of the side effects of a strong Bruno—it begins to pour out of us, and
doesn’t work, neither in theory nor real life. When we other people experience us as very negative and overly critical.
are putting everyone else first and not attending to Self-critique is important, but it’s very different than negative thinking. When
ourselves, then we can quickly become depleted, leav- we can have realistic self-critique and distinguish it from Bruno, it will lead to a
ing nothing left to be able to attend to anyone else. If better mindset and healing. We can learn to keep our self-critique realistic, because
you frame it as “you can’t serve from an empty vessel," none of us are perfect.
that might help you understand that it’s not just okay, Perfection doesn’t exist—what’s perfect for one person isn’t the same for
but truly necessary for you to take care of yourself first. another—so it’s just an illusion our culture teaches us to chase. Our self-critique
When we do this, we are less apt to drop into a nega- can be framed as learning and become more neutral, focusing on the issue and
tive mental state. what we learned instead of our worth around the issues.
O—OBSERVE I—INTENTION
16 When we are not depleted, we have the energy to We have a broader perspective when we move away from our negative thinking.
observe and listen to the negative chatter that Bruno Now we have negative, neutral, and positive thinking—again all framed in learn-
is telling us all day. We get to know when he’s most ing, not judgment. We are ready to set a better intention for our mindset. This is
active, what sets him off, what quiets him down. Once where we begin to shift the mantras, thoughts, and beliefs away from negative and
we observe, our awareness will begin to expand, and highly critical ones to those of self-compassion. When you feel Bruno getting loud,
we will notice that he never stops. This then allows us begin to use MOXIE the Leopard to combat those thoughts and replace judgment
to make space for where we need to activate MOXIE with nurturing.
the Leopard and tell Bruno to quiet down and stop. Many of us learned in 6th grade science experiments that plants change their
It’s helpful to have the image of the characters in mind growth rate based on how they are talked to, and I’m not talking about water and
as you do this. sunshine. These experiments have consistently proven that if someone speaks
Your inner bully tends to focus on shame, guilt, and kindly to the plant, it will grow substantially more than a plant that is ignored—and
judgement. MOXIE the Leopard focuses on learning, the least plant growth is when the plant is spoken to in a “mean / negative” way.
healing, and growing. If you observe that you are often If words have this kind of effect on plants, imagine for a moment what they can
beating yourself up and focusing on the “failures,” do for our body and healing. If we “hate” our body for the things that are causing
then become aware that you can shift this belief. You pain and illness and berate ourselves, then our body is not going to heal or improve
will begin to understand that there is no failure. There the way would like it to. So here’s the intention and question you can ask yourself:
is only learning—we learn to do that again, or don’t do Can I love myself as much as a plant? Can I rank as high as a plant? Can I be as kind
it again and try something different. Learning to do things to myself as I would be to a plant? The answer should be a resounding yes!
differently is how we grow.
E—EXPLORE
This last step is to continue repeating the cycle and exploring more and more ways that you can be gentle with yourself. Once your aware-
ness expands and your mindset improves, you will notice that your behaviors and feelings follow suit. We get to explore all the little ways
that we can treat ourselves with self-compassion throughout each day. Each time you silence Bruno and activate MOXIE the Leopard, you are
nurturing yourself. We learn to be kind to ourselves as we learn new ways of managing the difficulties in our lives. MOXIE is strong enough to
fight even the meanest Bruno. As we approach life with exploration and curiosity, our perspective and options widen, and we begin to grow
in ways we didn’t know before.
ICA UPDATE Fall 2022LIVING LIFE WITH MOXIE
Negative thinking and beliefs chips away at our self-esteem and self-compassion. It’s not beneficial for anyone. It’s a part of all
of our lives, but we have the option to learn how to undo the constant damage of a negative mindset. This doesn’t mean that we
go skipping around thinking life is rainbows and unicorns, although that wouldn’t be the worst thing for this world. It means
that we are aware of the thoughts that we have, and how they impact our feelings, behaviors, and entire being—and that we
know we have the capacity to change our brain and our body’s capacity to heal.
Imagine if you approached life believing that you are worthy of good things, that you are lovable, and that you are not a bur-
den to your family—all despite chronic illness and pain. Wouldn’t we all benefit from this?! Give it a try. Live life with MOXIE
the Leopard, and see how she can help you start living fiercely.
Tacha Kasper, MA, LMFT, is a licensed clinical psychotherapist, educator, and coach who specializes
in bringing her lived and clinical experience into integrated, trauma-informed mental health for the
healing benefit of people living with chronic health conditions and their loved ones. She has had IC/
BPS for 17 years and is also a triple negative breast cancer survivor. She is a member of the ICA Board
of Directors and owner of the Chronic Illness & Pain Institute [CIPI] and Healing Point Counseling
& Wellness Center. For more information, visit www.tachakasper.com.
Exercise:
The 3/30 Journal 17
The brain is a problem-solving machine, so we need to train it to look for good things.
This exercise will get your brain trained to search for positives instead of problems. It’s very
simple—get a notebook and each day write down a list of three things that you are grateful
for or something that went well. Do this every day for 30 days. Here’s the challenging part:
You cannot repeat any of the things, so at the end of the month you will have a list of 90
different things that are good and you are grateful for. Then, you can use these as new mantras.
ICA UPDATE Fall 2022Treatment Teams: Who’s on the Team?
It Takes a Village • Primary care provider/nurse
practitioner/physicians assistant
Another reason why managing IC/BPS is so costly is that no one health-
care provider can fully treat its symptoms.
• Internal medicine doctor
The AUA guideline for IC/BPS recommends a multimodal approach • Urologist/Urogynecologist
to pain management and treatment of other symptoms, including behav- • Gynecologist/OB-GYN
ioral and medical treatments which should be regularly reviewed and • Chiropractor
adjusted as needed.
That’s why respondents to the ICA Update survey had, on average, • Gastroenterologist
2.78 healthcare providers on their IC/BPS treatment team—mostly spe- • Surgical urologist
cialists beyond their primary care physician or provider. Some listed as • Pain specialist
many as eight members of their healthcare team, and respondents listed
• Pelvic Floor physical therapist
a wide range of traditional and nontraditional providers, ranging from
gynecologists and urologists to physical therapists, mental health profes- • Psychologist/psychiatrist/counselor
sionals, and alternative healthcare providers (see box). • Dietician
For many, a team of providers also reflects the need to manage over- • Acupuncturist
lapping chronic conditions, such as seeing a urologist for IC/BPS and a
• Endometriosis specialist
gastroenterologist for irritable bowel syndrome. However, there’s an even
more troubling figure in the survey responses—the significant number of • Rheumatologist
people who reported working with no healthcare providers to address • Ophthalmologist
their IC/BPS symptoms. Many said they had given up trying, a decision (to monitor Elmiron use)
with its own high costs in terms of quality of life. • Medical cannabis provider/
pharmacist
• Doctor of osteopathic medicine (DO)
18 In their own words • Allergist
“My urologist, who I have been seeing for over 20 years, also • Naturopath
administers a pain contract and prescribes opioids for chronic • Pelvic health psychotherapist
bladder pain. However, she is retiring and the other urologists in
her clinic do not prescribe pain meds, so I am now in the • Home health agency
process of trying to find a pain specialist who will prescribe (to do instillations)
opioids for IC/BPS.”
• Alternative care doctor
”For a while I also had to see the eye doctor to take Elmiron. I • Dermatologist (for specialized shots)
stopped doing that because it is too scary to risk eyesight loss.” • Functional medicine specialist
• Physiotherapist
”I have three providers (PCP, urology, PT) available to me but
currently only actively work with my PCP as I no longer actively • Massage therapist
need the others. Pelvic physical therapy truly changed my life!” Source: ICA Survey 2022; 271 respondents provided
number of providers on treatment team
92%
of office visits by IC/BPS
patients were to urologists
Source: AUA IC/BPS Guidelines
2.78
Average number of healthcare
providers on IC/BPS treatment team.
Source: ICA Survey 2022; 271 respondents provided
number of providers on treatment team
ICA UPDATE Fall 2022Work: Lost Wages, Lost Careers
For those living with IC/BPS, the largest costs often come in They aren’t alone. Based on the nation’s average hourly wage
the workplace—and too often, drive those with the most severe in 2022, days out of the office add up to more than $1,645 in
symptoms out of it completely. More than two-thirds of ICA lost income, on average, each year, according to the ICA Update
Update survey respondents (69 percent) said they were retired, survey. And previous research has pointed to a higher toll.
disabled, or otherwise unable to work. According to research cited in the AUA guideline, 19 percent
“The biggest impact on my life was having to quit work and of patients with IC/BPS reported lost wages, with a mean
go on Social Security Disability,” one respondent said. “I loved annual cost of $4,216. “Although clearly substantial, these
my job—it was very hard to quit… As the IC/BPS got worse additional costs fail to reflect the economic burden associated
and the medications made me groggy and dizzy, it was impos- with commonly occurring coexisting conditions,” the guide-
sible to keep working.” line says.
Others said they were forced to shift to part-time work or Those costs add up—to individuals, employers, and the
change professions to get away from fields like teaching or retail economy as a whole. Even applying the lowest estimate of lost
which make it difficult to use the restroom. “I used to work wages to the smallest estimate of U.S. IC/BPS patients yields
in a call center,” one respondent said. “Having to visit the bath- $7.4 billion in overall costs. If you go with the larger annual
room for unscheduled times and sometimes for longer than average cited in the guideline and the higher end of estimated
people liked meant my productivity was very low.” IC/BPS patients, the costs of just missing work due to the con-
Among those who do work, the challenges of living with dition could exceed $50.1 billion each year. Consider the full
the condition translate into lost time. On average, survey spectrum of chronic pain conditions, and it’s not surprising
respondents who worked reported missing nearly 19 days each that researchers have found that the impact of chronic pain on
year due to their symptoms or treatment. ”I ran out of sick the economy surpasses that of heart disease, cancer, or diabe-
leave and was forced to use leave without pay,” one respondent tes, according to a groundbreaking 2012 study published in
said. “I lost thousands of dollars.” the Journal of Pain.
18.8 69%
Average days absent from work due of ICA Update respondents 19
to IC⁄BPS symptoms and treatment reported being retired, disabled,
or otherwise unable to work
$1,645 - $4,216
Cost of sick leave/ lost wages per year 74%
of all people with high-impact
Source: ICA Survey 2022; 56 respondents provided chronic pain are unemployed
average sick days, 124 reported being retired or disabled;
higher cost range from AUA IC/BPS guideline 2022.
In their own words ”I have a law practice. I have had to cut back the
number of cases taken due to IC/BPS but work with
my doctor so that I can work effectively. I have had an
”It caused my career to end prematurely as well as my income impact of about 30 percent. I am proud,
income. I was earning over $100,000 a year, so that however, to still be practicing at 69.”
cost me over $1 million. Never mind the emotional
impact of losing my job, my salary, and my sense of
purpose.” ”When I get a UTI, I’m out for 5-10 days.”
”For about 20 years I missed about 40 to 50 percent of “Effectively retired 12 years early. IC/BPS was
my work time. It was financially devastating, and I damaging to my career as I could not consider
lost a lot of time with my children as they grew up.” positions with travel (which had been
8-10 trips per year).”
”I am self-employed, so no matter what the pain is
I work. As soon as I'm finished, I go to bed. ” “I worked over the last 25 years and missed zero days.
I had to learn to live with pain and go to bed very
early every night to escape the pain.”
”I left my job as a manager of an ambulance service to
take a much lower paying job with less responsibility.
I can no longer work as a paramedic. This has been ”I never made as much money as I could have
devastating to my mental health.” without IC/BPS.”
ICA UPDATE Fall 2022Beyond the Numbers: Real-Life Impacts
An ICA Update survey respondent succinctly pointed out one impact of IC/BPS that’s impossible to put a price tag on:
“Lack of dignity.”
“Honestly, I don’t think there’s any part of my life it hasn’t affected,” another added. “I constantly have to worry—afraid to
go anywhere. Afraid to eat. Afraid of new pills,” a third said.
Small wonder, then, that like other chronic pain conditions mental health is a critical factor to consider. “I think the biggest
impact IC/BPS has had on my life is depression,” one respondent says. “I have always been the one to help and volunteer my
time. No longer being able to do what you love and what fulfills you is depressing.” Another adds, “everyone with IC/BPS should
get proper psychological support.”
Survey respondents shared their thoughts on the real-world impacts on this and the following pages. But despite the mental
toll, some have found ways to manage the condition and find hope, as seen on p. 22. But the challenge is real. As one respon-
dent says, “normally the bladder does its job, and we don’t give it much thought. With IC/BPS, that’s all you think about because
it controls every second of every day... I’m thankful to have a strong will and am strong psychologically and spiritually.”
Chronic pain patients have
2x the risk of suicide, and are
4x more likely to have depression or anxiety
Source: US Pain Foundation
In their own words
20
“Many years of pain and being forced to shrink my life down to
only what my IC/BPS could tolerate— very little for years.”
“Living in fear. I am afraid that this is going to be my life forever. I am afraid that I do not have a trained professional
that is willing to assist me in my personal condition. I am afraid that my condition will worsen because I was not
able to get the treatment I needed because there is no one to guide me. I am only 58 and am having a hard time
visualizing the next 20 years. Constantly researching and constantly hoping.”
“The biggest would be relations with friends and family. No one understands the condition and they don't think it is
as painful and debilitating as I say… This led to me losing my friends and getting discredited as a crazy person.”
“My boyfriend of 21 years and I have not had sex in three years.
I’m very fortunate that he understands what is there for me.”
“The biggest impact is the lack of proper rest. The getting up at least 3 to 4 times to urinate.””My IC/BPS is a mild case. Nevertheless, it has certainly impacted my quality of life and
I wouldn't wish it on anyone. Some impacts: Sexual relations. Diet restrictions, especially beverages. I only drink
non-carbonated water. Some drugs have an adverse affect on my bladder, making it hard to treat non-IC/BPS
conditions. Days of discomfort. Sleep deprivation some nights. I try to not let IC/BPS interfere with my daily
activities, but it can make those activities far less pleasant.”
”I was a black belt in Taekwondo, but no longer practice or compete.”
“I have to think about everything that goes in my body. I have to think about every situation that I put myself in.
Will there be a bathroom? Did I drink too much fluids? How long ago did I have fluids? What kind of fluids?
Do I think I peed them out? If it is hot outside and I’m thirsty I have to be careful.
Don’t drink too much water but also drink enough water. It’s just everything. It makes you tired.
It makes you mad. You try to stay calm because you don’t want to upset the IC/BPS.”
”Financial instability, medical gaslighting, hopelessness, painful unsuccessful barbaric treatments
leading to medical trauma.”
”My best friend moved to the next state and I can’t visit because the car ride is too much for me.”
”I’ve been able to reclaim most of the biggest impacts (intimacy, running/triathlon, work for the most part),
but when I flare it takes me out of life and not knowing when it might show up again leaves me in
somewhat of an ongoing state of hyper vigilance that I’m working to manage.”
“My children were young when I was diagnosed.
Their early memories are of me in bed in pain or screaming in the bathroom.”
“Losing my ability to work, to be an active wife, an active partner in my marriage, an active sex partner, 21
losing the ability to be a person who was able to participate in life with my nieces and nephews and family,
not being able to continue in the volunteer fire department I was in, not being able to continue being
physically able to do yard work, take care of my own housework. It was all really frustrating.”
”I was just married, I felt guilty that only four months after being married I'm being told I have this disease.
It wasn't fair to him either. It totally changed the plans we had for life as soon as we were married.”
“It takes a lot of mental energy to get my daily tasks done.”
“Normally the bladder does its job, and we don’t give it much thought.
With IC/BPS, that’s all you think about because it controls every second of every day.
Even on a decent day you still can’t relax because the excruciating pain can hit in a second.
I’m thankful to have a strong will and am strong psychologically and spiritually.”You can also read
