Patrice B. Coleman
Hello, I am a Black woman who has been living with Interstitial Cystitis (IC), commonly known as bladder pain syndrome, for over 20 years. It is a chronic condition that causes bladder pressure, bladder pain, and sometimes pelvic pain. The pain ranges from mild discomfort to severe, unrelenting agony.
CEO / FOUNDER
I want you to take a moment to picture in your mind what your bladder does: it’s a hollow, muscular organ that stores urine, expanding as it fills. Once full, it sends signals to your brain through the pelvic nerves, creating the urge to urinate—a natural and often unnoticed process for most people.
However, for someone like me, living with interstitial cystitis, these signals become confused and distorted. Instead of the typical, manageable urge to urinate, I feel an overwhelming and constant need to empty my bladder, often with little urine to expel. The sensation is like being trapped in a cycle of urgency and pain that never seems to let up.
The symptoms of interstitial cystitis vary greatly from person to person, and even within one person, they can fluctuate over time. For me, they tend to flare up in response to common triggers, such as menstruation, prolonged sitting, stress, and exercise. These flares can be unpredictable, and each time they occur, they bring with them a unique brand of torment. Imagine living with a bladder that never stops screaming at you, demanding relief that never comes.
Interstitial cystitis is not just a physical ailment; it infiltrates every aspect of life, leading to a cascade of complications that can be as devastating as the pain itself. One of the first things to go is bladder capacity. As the disease progresses, the bladder walls stiffen, reducing the amount of urine I can hold and amplifying the urgency and frequency of my trips to the bathroom. What was once a normal and natural process becomes a constant, painful burden.
The impact on my quality of life is profound. Frequent urination and relentless pain have interfered with my ability to engage in social activities, maintain a job, and enjoy the simple pleasures of daily life. Going out with friends, attending family gatherings, or even running errands becomes a daunting task, overshadowed by the fear of pain and the need to always be near a restroom.
This condition has also taken a toll on my personal relationships. The strain this places on a relationship is immense, creating feelings of guilt, frustration, and isolation.
Emotionally, interstitial cystitis has worn me down. Chronic pain, coupled with the exhaustion from interrupted sleep, has led to significant emotional distress. It’s hard to remain hopeful or positive when every day is a battle with a body that feels like it has betrayed you. The pain is relentless, and so is the emotional toll it takes, often leading to anxiety and depression.
Throughout my journey with Interstitial Cystitis (IC), a condition that affects only 1% of people in the United States, I’ve come to realize how often it is misdiagnosed—up to 60% of the time—due to the lack of awareness and knowledge within the medical community. This can lead to prolonged suffering, chronic pain, and, in severe cases, even death. In response, I founded the Houston Interstitial Cystitis Network, a 501(c)(3) non-profit organization, with the hope of raising awareness about this illness, supporting research efforts, and providing financial assistance to those struggling to afford their medical care. Our mission is also to create a strong support network for individuals battling IC, so no one has to face this condition alone.
Our Services
Supporting Interstitial Cystitis (IC) patients through resources, community, and advocacy for better living is at the core of our mission. We provide essential information on treatment options, lifestyle adjustments, and coping strategies to empower patients to manage their condition more effectively. Beyond resources, we foster a strong sense of community, where individuals can connect with others who truly understand their struggles, offering a network of emotional and peer support. Advocacy is also a key component of our efforts—working to raise awareness, promote research, and influence policy changes that lead to improved healthcare access, better treatment options, and a higher quality of life for IC patients. Through these combined efforts, we aim to ensure that no one with IC feels isolated, uninformed, or without hope for a better future.
Research Funding
Providing financial support for critical Interstitial Cystitis (IC) research initiatives and advancements is essential to improving the lives of those affected by this debilitating condition. By funding cutting-edge studies, we aim to uncover new treatments, develop more accurate diagnostic tools, and ultimately work toward a cure. These research efforts are not only about alleviating symptoms but also about giving patients hope for a future where IC can be better managed or even eliminated. In addition to medical breakthroughs, our financial support helps attract top researchers and ensures that the scientific community continues to prioritize IC as a serious public health issue.
Community Support
Creating a safe space for patients to connect, share experiences, and find encouragement is vital in helping those with Interstitial Cystitis (IC) cope with the emotional and mental toll of living with a chronic condition. Many IC patients feel isolated due to the nature of the disease, which can be difficult for others to understand. By fostering a supportive community, we provide an environment where individuals can openly discuss their struggles, exchange tips on managing symptoms, and share personal stories that offer comfort and validation. This sense of belonging can be profoundly healing, as it helps patients realize they are not alone in their journey. Through peer support groups, online forums, and community events, we aim to empower individuals with IC, providing them with the strength, hope, and encouragement they need to face their daily challenges.
Financial Assistance
Offering financial help to patients facing challenges due to Interstitial Cystitis (IC) treatment costs is a critical part of our mission. Many individuals with IC endure expensive medical treatments, including doctor visits, medications, therapies, and procedures, which can quickly become overwhelming. For those without adequate insurance or financial resources, these costs can limit access to necessary care, forcing them to choose between their health and other essential needs. By providing financial assistance, we aim to ease this burden, ensuring that no one has to forgo treatment due to financial constraints. Our support allows patients to focus on their health and well-being rather than the economic strain of managing this chronic condition.
Empowering Change Through Your Donations
Join us in making a real difference. Your contributions directly help us support those in need by providing access to essential treatments, financial assistance, and emotional care for individuals living with Interstitial Cystitis. With your generosity, we are able to fund vital research for better therapies, expand outreach programs, and create a strong support network for patients and their families. Together, we can change lives for the better by bringing hope, relief, and the promise of a brighter future to those affected by this painful and often misunderstood condition. Every donation, no matter the size, is a step toward improving the quality of life for IC patients and strengthening our community as a whole.
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Legal & Tax-Exempt Status
The Houston Interstitial Cystitis Network is a nonprofit corporation proudly incorporated in the State of Texas and is officially recognized by the Internal Revenue Service as a tax-exempt organization under Section 501(c)(3) of the Internal Revenue Code. All contributions are tax-deductible to the fullest extent allowed by law.
EIN: 92-3853910
Incorporation Date: May 3, 2023
Our commitment is to support individuals affected by Interstitial Cystitis through support, and improved access to care.
(FAQs)
Interstitial Cystitis (IC)
1. What is Interstitial Cystitis (IC)?
Interstitial Cystitis, also known as bladder pain syndrome (BPS), is a chronic condition that causes bladder pressure, pain, and discomfort in the pelvic area. It is not caused by an infection or bacteria, and therefore, antibiotics are not effective. The severity of symptoms varies but often includes a frequent urge to urinate, pain during intercourse, and disrupted daily activities.
2. How Houston Interstitial Cystitis Network is IC?
In the United States, IC affects approximately 3-8 million women and 1-4 million men. However, the condition is likely under diagnosed because its symptoms overlap with other disorders such as urinary tract infections or overactive bladder syndrome.
3. What is the Houston Interstitial Cystitis Network, and how can it help?
The Houston Interstitial Cystitis Network, based in Houston, TX, is a 501(c)(3) non-profit organization dedicated to improving the lives of those suffering from IC. We provide:
Educational resources to better understand IC.
Support groups to connect patients with others who share their experiences.
Advocacy for improved healthcare access and awareness.
Assistance in identifying specialists and managing treatments.
For more information, visit us at [insert website or contact information].
4. What are the primary symptoms of IC?
Chronic or recurring pain in the bladder or pelvis.
Increased urinary urgency (feeling the need to urinate).
Increased urinary frequency (urinating more often than usual).
Pain that worsens after eating or drinking certain foods or beverages.
Pain or discomfort during sexual intercourse.
5. How is IC diagnosed?
A diagnosis of IC typically involves:
A detailed review of your medical history and symptoms.
A physical examination of the pelvic region.
Exclusion of other conditions like urinary tract infections, kidney stones, or bladder cancer.
Cystoscopy (a visual inspection of the bladder lining).
Potassium sensitivity testing (to assess bladder sensitivity).
The Houston Interstitial Cystitis Network offers guidance and informational sessions to help patients understand the diagnosis process and find experienced healthcare providers.
6. Is there a cure for IC?
Unfortunately, there is no cure for IC, but various treatments can manage symptoms and improve quality of life. The effectiveness of treatments varies from person to person.
7. What treatment options are available for IC?
Patients may pursue a combination of therapies, including:
Lifestyle Changes: Implementing a bladder-friendly diet, reducing stress, and maintaining a healthy lifestyle.
Medications: These may include anti-inflammatory drugs, antihistamines, or pentosan polysulfate sodium (FDA-approved for IC).
Physical Therapy: Pelvic floor muscle therapy can help alleviate pain and pressure.
Bladder Instillations: Medication is delivered directly into the bladder through a catheter.
Neuromodulation Therapies: Techniques like sacral nerve stimulation or TENS units.
The Houston Interstitial Cystitis Network can connect you with healthcare providers skilled in managing IC and provide financial assistance options for qualifying treatments.
8. What is a bladder-friendly diet?
IC patients are encouraged to avoid certain foods and beverages that might irritate the bladder. Common triggers include:
Caffeine and alcohol.
Carbonated beverages.
Spicy foods.
Acidic fruits and juices (like oranges and tomatoes).
Artificial sweeteners.
The Foundation provides dietary resources and workshops to help patients identify their personal triggers and adapt their meals.
9. How does IC impact daily life?
IC can significantly affect your quality of life, leading to:
Difficulty sleeping due to frequent urination or pain.
Disruptions in work and social activities.
Emotional stress, anxiety, or depression related to chronic symptoms.
10. How can family and friends support someone with IC?
Learn about IC to better understand the patient’s challenges.
Show patience and empathy, especially during flare-ups.
Encourage them to join support groups, like those organized by the Clommen IC Foundation, to connect with others living with the condition.
11. Does the Houston Interstitial Cystitis Network offer support groups?
Yes, we host monthly support groups for IC patients and their families. These sessions provide a safe space to share experiences, learn new management strategies, and connect with a supportive community.
12. Are there educational resources available?
We provide free resources, including:
Informational brochures on IC management.
Guides for navigating healthcare and insurance systems.
Articles and webinars by IC specialists.
13. Is there ongoing research for IC?
Yes, significant research is being conducted to understand the causes of IC and develop new therapies. Areas of focus include:
Identifying biomarkers for more accurate diagnosis.
Developing advanced bladder repair and regeneration techniques.
Investigating the link between IC and other conditions like autoimmune diseases.
The Houston Interstitial Cystitis Network works with research partners to advocate for clinical trials and disseminate new findings to the IC community.
14. Are there clinical trials available for IC patients?
Yes, clinical trials often explore cutting-edge treatments for IC. The Foundation provides guidance on locating relevant trials and understanding eligibility requirements.
General Information
Support and Advocacy
Symptoms and Diagnosis
Living with IC
Research and Future Developments
Treatment and Care
Get In Touch With Us
We’re here to support you on your IC journey, providing not only resources and information but also a compassionate community that understands the unique challenges you face. Whether you're newly diagnosed or have been managing Interstitial Cystitis for years, our goal is to offer guidance, emotional support, and practical solutions to help you navigate this difficult path. From connecting you with others who share similar experiences to offering financial aid for treatments, we are dedicated to standing by your side every step of the way. Together, we can help you find relief, build resilience, and regain a sense of control over your life.
You are not alone in this fight.
We are committed to walking this journey with you.
Our office
2407 Pioneer Oaks Drive,
Fresno, Tx. 77545
Hours
Monday - Friday
9am - 2pm
Contacts
(281) 415-6155
info@hicntx.org
