What I see

What I See

I will start my story when I am forty five years old.  I was diagnosed with something called IC better known as Interstitial Cystitis.  What is it exactly?  Every human bladder has a gag layer surrounding the interior lining of the bladder wall for protection.  IC occurs when there is a deterioration of the gag layer exposing the nerve ends around the bladder wall.  Ouch!

The symptoms are like a UTI except antibiotics are ineffectual. There is urgency, frequency and severe chronic pelvic pain.  IC is incurable, and needs a treatment plan for life including meds, various types of therapies and eating a more alkaline diet over an acidic diet.  Stress, anxiety and tension are its triggers because you're dealing with pain and anguish over the many changes that will take place in your life, and having to worry about bathrooms everywhere you go.  During a flare-up it is debilitating and demands for you to stay at home.  You cannot have sex, work, sleep, drive, cook, exercise or go on with your daily routines due to the discomfort and frequent visits to the bathroom.  When you’re told you have IC a chronic bladder disorder you can't believe it!  There is no positive evidence of how or why it occurs in the bladder except if your lucky, early detection will determine its severity and with immediate treatment and therapy IC can heal, or it’s prevented from getting worse.  This test is called a Cystoscopy, a thin tube with a scope that is inserted through the urethra into the bladder to see the entire gag layer around the bladder.  The amount of deterioration can vary, a mild case would be a small spot, medium case would entail a larger portion and a severe case would encompass the entire bladder.

Dr. Robert Echenberg is a brilliant specialist in this field of chronic pain.  

The Echenberg Institute for Plevic & Sexual Pain is located in Bethlehem, PA www.theechenberginstitute.com / office@drechenberg.com

Dr. Echenberg, better known as Dr, E is deeply committed to finding the answers to these disorders.  He has a brilliant theory and is writing a book. It remains his life’s mission to find the missing pieces that links all those who secretly suffer with these chronic pain disorders, what links us together and the nature of how these pelvic disorders are all connected, this will be his legacy. You could say he is trying to connect the dots to a one of the most complex and misunderstood areas of women's chronic pain. His research extends as to why some women and men get IC and others don’t?  Why does IC later on lead to Chronic Pelvic & Sexual Pain, Pelvic Floor Dysfunction and Overactive Bladder Syndrome sometimes even IBS.  Young woman who have had multiple UTI over a certain period of time are prone to getting IC therefore there is a need to be extra careful of bacteria as with sexual activity and proper hygiene.  

Most importantly what I see is that IC affects all types of intimate relationships it is the main cause of interrupting the harmony of the union and tests a couple's coping and full understanding of how IC will change both their lives forever.  This may call for couple's therapy sessions to be added in the mix.  These disorders affect every area of your life and big adjustments must be made.  One being acceptance and understanding, unconditional love, patience, empathy and tolerance.  The hope is, these disorders can be managed over time and many people live full lives by adjusting their lifestyle with the many challenges these disorders present.  This brings me to my next issue of what I see…

When an individual lives with any form of severe chronic pain that is incurable their treatment plan is as individual as the disorder or disorders they suffer from.  Depending on the level of pain opioid medications are a necessary treatment plan and is determined by the specialist.  Taking pain medication is monitored closely, deciding on the right pain medication is a unique doctor patient relationship that is strictly confordential and must be respected by all pharmacies. No pharmacy has the power or right to refuse a provider, a nurse practitioner who has a licensee to prescribe class 3 medications. Nor should they refuse a patient when the threat of withdrawals are imminent. Again we are not dealing with drug abuse! If a pharmacy finds poor excuses not to fill a controlled substance just because they can they should be reported to the Better Business Bureau. Bottom line, pharmacists and staff should have a better understanding of how severe chronic pain elevates when a patient does not stay ahead of the pain and is outright denied class 3 medications. They are putting the patient at high risk anything can happen…  This is an atrocity!

The CDC and the DEA have no idea of how chronic pain works, except what the census or overall issues are surrounding opioid abuse in this country. Chronic pain patients become dependent due to the elevation of pain not because they want to get high. Unfortunately pain drugs are addictive and having to live on them is not a patience’s choice but taken out of necessity so they may function as best they can. There are two distinct types of opioid patients, one is the chronic pain patient and the other is a drug abuser.  One takes the drug for severe chronic pain the other for recreation. The chronic pain victim receives normal-icy, the abuser receives pleasure. I”m seeing something wrong with this picture perhaps the colors are off…

Solution: All chronic pain patients should have a card similar to a drivers license with a photo ID, account number, validation that they are Chronic Pain patients approved for taking class 3 medications and a specific code or password that only they know to ward off identity theft. Once the information is typed in their whole profile and history comes up in the system approved to take class 3 medications and everything is absolutely legitimate.  Their profile is automatically entered into the system stored with all providers and pharmacists database. They are confirmed chronic pain patients with a real history of chronic pain.  This solution differentiates the chronic pain patient from the drug abuser and makes everything safer and easier for everyone involved. 

However this brings me to the next issue I see brewing.  Benzodiazepines, this is another treatment plan under Behavioral Health.  Anybody that knows anything about how chronic pain works in the human body fully understands this factual evidence.  If you suffer with severe chronic pain it is accompanied with anxiety, stress, fear, panic, PTSD, trauma and mild depression.  Therefore, a full treatment plan designed for many chronic pain patients is both, an opioid for pain management, and Benzos for the emotional aspects of living with chronic pain, they go hand and hand.  For example, you can’t design a garment unless you know how to sew, you can't be in a committed relationship without the other half and you can’t sell a home without a deed and the list goes on…  There should be no separation or controversy between using these two drugs to combat chronic pain. This ridiculous dilemma of giving many chronic pain patients both these medications under their doctors approval is going to slow down their breathing and stop their heart is far fetched. In fact this is part of a well thought out treatment plan designed exclusively for the the patient by his or her specialist.  Whether the specialist is licensed to give out both medications or it involves two separate specialists they need to work in unison to properly treat the whole issues surrounding severe chronic pain. This includes the human brain, the spinal chord, the Central Nervous System and the Immune System for they are all compromised with chronic pain. 

 In closing, I see the inability to place the patient first due to unreasonable guidelines that don’t apply to the reality chronic pain patients live with.  I see no division between the chronic pain patient VS the drug abuser they are labeled as the same growing problem in the US and treated as such.  Pharmacies have no right to deny an order from a provider that calls for an Opioid, Bensons or both regarding chronic pain patients within the systems database.  I see a flaw in the health care system regarding Chronic Pain, Class 3 medications needed to properly treat Chronic Pain and the big organizations with unreasonable demands placed upon guidelines that don’t pertain to chronic pain patients whatsoever.  There needs to be another federal reform bill passed under the present Health Care System in the US.  An identity card issued, entered into the system that separates treatment between Chronic Pain & Drug Abuse.  

Also, Chronic Pain and disabled patients are sometimes looked upon as addicts and labeled just by appearance only.  Sometimes on occasion they may shake due to the medications they are on and It’s extremely disturbing to watch people stare at them in judgement. However, they have no idea what it’s like to live with chronic pain disorders when labeled by sight alone, what it’s doing to the emotional psyche of that individual.  Try to have empathy and less judgment, for what you see may not always be what you think…

I’m an Advocate for Chronic Pain:  As a collective try to have a little compassion and sensitivity for the human condition especially when it comes to your fellow man when afflicted with something they cannot control.  Whether the suffer with real chronic pain or drug addiction. They both need extra help to try and live a fairly normal life.  Please respect whatever treatment plan it takes to help them survive and cope with everyday life so they never lose hope.  Suicide is not an option in todays New World… 💟