Every September, IC/BPS patients and organizations around the world gather together to promote interstitial cystitis, bladder pain syndrome and chronic pelvic pain. This year, our campaign is bold and blunt, telling the story of patients who are refused pain treatment with, in some cases, tragic results. Despite decades of research showing that this medical condition is real and treatable, countless patients have been told that their pain was not real and/or “all in their heads.” Despite pain levels as severe as cancer and/or bladders so profoundly damaged that they are bleeding, they are sent home with no pain care other than an OTC product. This trend has become far more real with the passage of the CDC Guidelines for Chronic Pelvic Pain which has resulted in thousands of chronic pain patients forcibly removed from a treatment that they were not abusing, not misusing and showed no signs of addiction.
By her 24th birthday, Lisa Benshabat had been to more than ten specialists. Most doctors dismissed her reports of pain despite a diagnosis of IC that was confirmed by multiple specialists. They simply did not believe that she was suffering and, tragically, she took her life in January 2016. Her mother Gail Benshabat is a spokesperson for this years IC Awareness Month and will bring her story to the Budapest meeting of the European Society For the Study of BPS in late September. She said “What would bring a young woman or man to the bring of ending their life? It’s called the lack of hope. There was no collaboration between her medical care providers to ensure that her pain was controlled and that her emotional health was monitored.”
This year, we ask patients to talk about their pain and struggles. By working together, we can not only educate medical providers that IC pain can be severe and that patients may require more intense pain treatment. We absolutely want to reach out to patients who are struggling with pain and give them the hope that they deserve, some treatment ideas and tips that they can use with their care providers as they discuss their pain needs.
What You Can Do To Help!
- Share YOUR IC story
- Nominate your favorite doctor & physical therapists for our annual award!
- Share Our Daily IC Facts
- Add IC Awareness Month To Your Facebook, Twitter, Pinterest, Instagram, etc.
- Help Put Our IC Awareness Posters in Thousands of Doctor Offices
- Share Our IC Fact Sheets
- Send Our Press Release To Your Local Paper
- Participate in Our Poster Contest
- Participate in our Meme Contest
- Participate in Our Twitter Contest – #myicpain
- Donate an IC Book To Your Local Library
- Start A Support Group
- Wear Your Pride with IC Awareness Bracelets & Car Magnets
Essential Pain Resources
Better Diagnosis Leads To Correct Treatments & Reduced Pain
One of the biggest barriers that patients face is an incomplete or incorrect diagnosis. Patients with untreated Hunner’s lesions (Subtype 1) may suffer extreme pain but those lesions can be treated successfully with laser therapy, fulguration, steroid injection and/or the new medical device LiNKA resulting in a dramatic reduction and/or elimination of pain. Yet despite finding Hunner’s lesions during hydrodistention with cystoscopy, some urologists don’t treat them resulting in months or years of unnecessary suffering.
Patients patients with myofascial pain / pelvic floor dysfunction (BPS Subtype 3) require physical therapy and/or muscle relaxants to help reduce muscle pain and tension. Bladder treatments are not effective. In contrast, patients with bladder centric/bladder wall symptoms may require more intensive bladder treatment, such as rescue instillations, botox, neuromodulation and/or cyclosporine. Patients with pudendal neuralgia often struggle with nerve pain due to an entrapped or compressed nerve. The key to their treatment lay in the identification of the injury. They will need physical therapy and treatment for neuropathic pain.
We are now long past the day when a treatment fits all approach works. Clearly, there is diversity in this patient population that requires a more finessed diagnostic process and the development of a custom treatment program for that patient.
What’s Your Subtype? Are You Using The Correct Treatments?
Patients diagnosed five or more years ago may still be operating under the assumption that IC is a “bladder disease.” We no longer consider that. Rather, we think of IC as a neuromuscular disorder. The only patients with a genuine bladder disease are those patients struggling with Hunner’s lesions. It’s time for you to learn about the proposed subtypes.
The American Urology Association treatment protocol might not be organized into specific subtypes BUT it still works very well. Patients start at Step One and work their way through the full steps. There are MANY treatment options available. Please note, as well, that for patients who cannot afford traditional therapies, several OTC supplements (Prelief, Cystoprotek, Cysto Renew, Desert Harvest Aloe, CystaQ and others) are also available.
Understanding IC Flares
The bladder and/or pelvic pain associated with IC is often episodic. Patients with Hunner’s lesions or bladder wall damage may flare after eating foods or beverages high in acid or caffeine. Patients with pelvic floor dysfunction may struggle with a flare after sex, sitting or driving for long distances. Some women may flare due to hormones and/or menopause. Identifying the type of flare that you are having can greatly help you control and limit that flare.
- Sign Up For the ICN E-Newsletter & Receive Our 40 page ICN Flare Management Guide – Describes the types of flares that you can have along with hour by hour rescue plans.
Hidden sources of chronic pain/flares for bladder irritation
- Even one cup of coffee per day can cause long term-chronic pain
- Sodas (Colas, Sprites, etc.)
- Energy drinks
- Iced teas, sweet teas
- Multivitamins containing Vitamin C or B6
- Artificial sugars
Building Your Pain Management Tool Kit
The pain that patients can experience during IC flares and/or if they have Hunner’s lesions has been rated equivalent to terminal cancer. There may be times when strong pain medication is necessary and, in fact, the American Urology Association Guidelines for IC/BPS encourages a multimodal approach to treating IC patient, including the use of opiate medications if necessary. Please read our pain management resources for additional resources and information!
- Pain Resources & Tips
- Pain Management For IC
- Medical Marijuana – Survey Shows Patients Find Relief With MMJ
- OTC Pain Management Products
It’s not unusual for anyone struggling with a chronic, persistent illness and/or pain to have some uncomfortable thoughts about suicide. This is a reflection of just how difficult pain can be, especially if you lack medical care and support. Suicidal thoughts often result when pain exceeds your resources for coping with pain. It doesn’t mean that you are a bad person, or crazy, or weak, or flawed, because you might have these thoughts. It doesn’t even mean that you really want to die – it only means that you have more pain than you can cope with right now. When pain exceeds pain-coping resources, suicidal feelings are the result.
Please reach out to someone that you trust if you’re are struggling with suicidal thoughts, preferably your doctor. They need to know just how difficult this is for you, especially if your pain is out of control.
If you don’t have access to medical care, please call the National Suicide Prevention Hotline! They can and will try to help you. You are not alone!