PN/IC Patient: SUCCESSFUL treatment story : USA

[Icpatientadvocacy]

Living with Interstitial Cystitis, more commonly known as Painful Bladder Syndrome, Pudendal Neuralgia & Pelvic Floor Dysfunction & how they changed my life, by Emily Gammell

Let’s start from the beginning of being diagnosed.
May, start of summer 2018. I remember anxiously walking into yet another doctor’s appointment & waiting for that haunting knock on the exam door. You know the one that’s followed by the friendly exchange of introductions between patient & physician? My failed attempts, ones that span over at least three years had led me to this very moment. Due to a long history of misdiagnosis & a lengthy antibiotic wrap sheet that felt like they’d been handed out as quickly & frequently as candy, I can truthfully say I was not hopeful. Some would say, “stay positive” but that’s easier said than done. You see, so many doctors had previously failed me, so I entered this appointment different than any other. This time, I decided I would speak less about my medical history & pain & see if this “new” doctor could do their job. For once I decided to not tell them what I felt I was suffering from & test the notion of their expertise. After all they are the ones with the PhD, right?
The knock at the door came & in walks this young female RNP, (registered nurse practitioner) immediately I felt hopeless. I felt, “this appointment is a loss of my time.” Luckily for me, at this point I was no longer going to any doctor appointment without my full medical history. I sat back & watched as this RNP read through my files & then my “I see you moment came.” She looked up at me after what felt an eternity & asked, “Have you ever heard of Interstitial Cystitis?” I stared back in shock, wondering did I hear her right & as the tears started flowing, I responded, “Yes, yes I have.” What took years of misdiagnosis, antibiotics, pain, fear, frustration & isolation, I finally met a physician that validated my pre-conceived self-diagnosis. Yes, you read that right. I had self-diagnosed myself at least two years prior but not one physician would validate my findings nor even investigate my condition further. Literally I felt like, “Hey! See me! Listen to me! I’ve done all the hard work for you, now it’s your turn to validate my findings.” I leveled with her & told her all about my history of failed diagnosis & how I honestly only came to see her for a referral to a urologist. She naturally gave me a referral & off she sent me. That was just the start to a very long & painful road to living with IC. Shortly after being diagnosed, I described “IC” as a “life sentence.” Some are confused by that statement because I look healthy, “normal”, not sick. But that day back in May I felt I’d been run over repeatedly. I felt relief accompanied with confusion & fear. Relief because I had been validated. That my pain was real. It wasn’t only in my head like my previous gynecologist insisted. I want to state that at the time of basically being told I was, “crazy” I was only 27 years young and was living with what looked like on paper, post menopause. Nor have I ever given birth or underwent a hysterectomy. As I write this I am now 30. So along with the assurance of being given an actual name for what I’ve been feeling, there are treatments but they do not work the same for every patient. You’re probably wondering why I would be upset after finally receiving a diagnosis I’ve waited so long for? I also knew there is no known cure due to my findings of late night google research. You may think, “well 2-3 years isn’t a long time to go undiagnosed.” But sadly, it is & it’s entirely too long and unacceptable that patients are not being taken seriously. Most women living with IC are not being diagnosed for 8-10 years. This is completely unacceptable due to the life altering pain these patients are enduring. Most are opting for extreme surgery which is out dated like bladder removals while still very young and data isn’t showing any improvement for quality of life and still no known cure as of year 2019. After years and countless hours of research I am sad to report, after speaking with many women, that a lot are committing suicide due to living with chronic pain that outweighs their quality of life or will to carry on. They see no end in sight and suicide they feel is their only option left. Most of these women are struggling with extreme depression & anxiety, fear & isolation due to being ignored & misunderstood. Fear of never finding love due to the stigma surrounding pelvic disorders. Due to loosing themselves and becoming a shell of their former selves. This is beyond horrifically unacceptable of our health care system.
Back track to two years prior, Summer of 2016, where I had been dismissed by my long-time female gynecologist. I want to tell you that I loved this doctor. Not exaggerating. When I moved three hours away, I would travel to see her. The kind of, “I trust this doctor.” relationship. She knew my complete medical history & I’d seen her since my late teens & always felt comfortable because she not only studied her field but she’s lived it, right? Looking back at my younger self, I only ever wanted female doctors because of this natural ideology and notion that they show more empathy than male doctors. Oh, how naive was I. After eight visits in one month, I left that office completely broken. All she did was remove my birth control implant and send me on my way. Nothing seemed to improve. Still to this day I am not using birth control as some doctors who specialize in IC feel it makes symptoms worse. Confused is an understatement. I kept having what felt like re occurring UTIs. (urinary tract infections) I would always finish my prescribed antibiotics like any good patient but I had reached my mental capacity with the pain I was feeling. I thought surely their missing something. I had struggled with what seemed like UTIs most of my 20s but this pain was more than that & I knew it. Negative culture test after another & hand full of pills was the dead end I kept hitting so naturally I did what every person who knows google does. I started researching my symptoms & after a few hours of digging there it was, the definition to Interstitial Cystitis. Two words that would forever change my life as I knew it. I had never even heard of IC before so why am I first hearing of it thru my own research? I’ll admit these two words still haunt me. It’s taken almost an entire year to accept my reality. One where I’m still acquiring true peace. I have to constantly remind myself to be gentle with my mind & body because looking back, in the grand scheme of this journey we call life, a year is not a very long time for mental acceptance. A year though is a very long time to fight chronic pain. People often ask the definition to chronic. My answer is always, “chronic means constant, it means all day every day.” People also ask me, “how are you feeling?” & I recognize this as someone who genuinely cares for me but I struggle to answer them truthfully most always. We as humans are constantly told to “fake it till you make it” & I deserve an academy award for my acting. I’m not proud of this but in order for a person who struggles with chronic pain to get from day to day, this is the card we must play. One like me who has to work, see clients, boss’, it’s part of the job description. I’m a hairstylist & no one wants to hire a person who looks upset nor do clients want to sit in a stylists chair who looks sad. Due to having to hide most all day every day to the outside world what you’re actually enduring, most patients feel isolated & misunderstood. They feel alone & this causes mental strain & depression.

Interstitial Cystitis is not the only menace taking up residency within my body unfortunately. Accompanying alongside, I also have pudendal neuralgia (PN) & pelvic floor dysfunction (PFD). Painful symptoms include but are not limited to vaginismus, vulvodynia, constipation, extreme pelvic & bladder pain, frequency, urgency, pressure & burning of my urethra and clitoris, trouble walking, running, standing, sitting, moving, muscle spasms within my stomach that feels like a knife is stuck inside me, heaviness within my pelvic floor, muscle spasms of bladder & pelvic floor muscles, weight loss, loss of appetite, anxiety & depression, painful sex, loss of sex drive due to pain & depression, increased sleep because of depression, anxiety, fear & sadness. The list goes on. The will to live had become impossible. It’s an understatement to say my physical & mental health have suffered greatly. Those aren’t the only things sadly. My career has been put on hold making my finances nonexistent. I’ve had to move from NYC back to be near my family in Tennessee just so they can help me get the treatments I need. My friendships and personal relationships have suffered immensely as well. If not for the help of my family & the god send of a new specialist, my PT and Therapist, I know I would not be alive today & able to share my story. Thoughts of suicide due to pain, isolation, fear & the unknown for the future of my life began to fill my head space. I know some say it can always be worse but I find that unfair. It’s also unfair to assume someone is healthy or ok because as we know unfortunately invisible illnesses exist. Thankfully I’m one of the lucky ones who had the help of finding my specialist. He has been the first person to help me gain relief. From the moment I obtained a referral for a urologist, I have seen 5 other doctors from the day of diagnosis & they all confirm findings. I have a Pelvic Floor Physiotherapist (PT), Gynecologist, Gyno/Urologist, Chiropractor & Therapist. I have done pelvic floor physiotherapy & countless prescription drugs along with everything imaginable on the holistic realm. Pelvic Floor PT is just as it sounds. Physical therapy for your pelvic floor. It is done in a private room with a female physician if you are a woman. My diet is now an AI (auto immune) diet which helps to eliminate acidity within the body which is what causes chronic inflammation. I am no longer able to consume alcohol due to the inflammation and pain it creates. I view it as a small price to pay. CBD and THC are the only things I use for pain and I am an advocate of these means being made available and legal country wide. Thankfully my specialist does not prescribe opiates. I have never been dependent upon opiates which may sound, “well then you haven’t been hurting enough” but as we know opiates are only band aids which create lifelong dependencies and more health issues so I’ve always advocated against them. I am only able to write my story due to the meeting of Dr. B. JARNAGIN in Franklin, TN who runs the Center for Pelvic Health. I met doctor J a few months after my diagnosis. He is my second urologist but my first gyno/urologist specialist. I’ve had bladder installations, some successful some not. Most done from the privacy of my own home with the help of my then partner. Dr. J’s team mapped my pelvic floor along with my PT & decided to try a low-grade anti-depressant that works as a never block. Immediately I was feeling some relief & continued for the next month. He decided I was a candidate for an amniotic allograft injections procedure involving my pudendal nerves. I had the surgery Feb of 2019 along with Botox injections placed into my pelvic floor muscles. I was awake for this procedure because insurance did not help due to deeming treatment, “experimental” and “not medically necessary”. I viewed it as what’s a little more pain compared to what I’m already enduring if the end result is hopeful in bringing some relief. Doctor J has been a living angel because for the first time in years I am experiencing relief. Relief brings me to my next point.

The procedure I had done is not available country wide, nor is it commonly known of. It does not help all patients but it does have a 70% success rate which is an amazing statistic compared to most treatments being outdated. Chinese medicine has used the harvesting of amniotic cells from participating mothers for centuries and western medicine is finally giving it a chance. Science has proven nerves can repair themselves at a faster rate due to amniotic fluid as opposed to traditional medicine where a nerve is cut or damaged and nerve repair typically happens at a very slow rate if ever any improvement. If a nerve is completely severed then a patient’s chances at recovery is likely none. Nerve damage is associated with chronic pain and most IC and PN patients are experiencing symptoms due to nerve damage either from a surgery, trauma like a fall or accident or for a lot it’s thought to be genetic. If a genetic predisposition exists then your odds of acquiring an auto immune disorder are higher and is also thought to be linked to physical and mental trauma though research proves IC & PN are not psychosomatic. Meaning a patient has not made them self sick due to any mental capacity. The battle with insurance companies and securing treatment has only been one part of the night mare. Patients have to jump through endless red tape to secure a referral to gain the right to access and see a doctor educated within certain specialties. We all know the amount of power insurance companies have & with power comes money. Insurance has deemed many treatments, “not medically necessary” & refuse to help patients pay for treatments. Treatments people need due to life altering diseases. Patients are paying their taxes; insurance premiums & medical bills and insurance is still failing our citizens. Plenty of Americans are left paying their insurance personally out of pocket due to a lot of fields not offering benefits. I feel govt & religion has no place among health care, especially among women’s health and our right to decisions. Americas health care is a disastrous system due to big pharma’s involvement and both their political reach. It is broken and beyond repair within the current order. Things must change. Our system profits off the sick and is not in the business of helping people. Doctors hands have been tied due to insurance and patient noncompliance is at a staggering all-time high. I do believe in health care reform and of doctors, whether western, eastern, holistic, integrated etc. of wanting to help people. It is time now more than ever that we allow them to. Every citizen is entitled to quality and affordable health care as I believe it is every Americans civil and social right. Patients have been left with no choice but to advocate for themselves and it’s a disgrace because too many are being ignored. The average cancer patient loses their entire life savings within two years of fighting for their lives. Not to mention the financial strain that follows. Auto Immune Disorders are at an all-time high, with new disorders being identified daily yet no known cures for most. As an AI patient, I have personally experienced the detrimental effects of living with an invisible illness. When a patient is diagnosed, they are never taught how to deal with the trauma of being told they have something they will struggle with the rest of their lives, more than a common cold but not terminal cancer. As research shows most Auto Immune Disorders are identified as not life threatening but eventually symptoms created because of the disorder take patients’ lives. When is Americas healthcare system going to start holding insurance companies accountable? Health care reform is needed and is needed now. Due to lack of funds being invested in Women’s Health, Auto Immune Disorders & especially within the field of Urology, I am a living testament to the out dated testing available to women living with pelvic disorders. Interstitial Cystitis & Pudendal Neuralgia do not only affect women. The World Health Organization estimates 200 million people worldwide are living with bladder & pelvic conditions. Due to unknown causes & cures, most conditions are being classified as, Auto Immune Diseases. In a lot of cases, especially among female patients, this rate could be drastically decreased especially among women who have experienced child birth. A high volume & increasingly amount could be easily avoided & cured with patient advocacy involving education and proper recovery being made available to women after pregnancy.
I’m sharing my story in the hopes of helping even just one patient who feels held prisoner within & by their own body & victimized by Americas so called health “care” system. I urge our gov’t & citizens to show grace to our fellow mankind. I believe in humanity & we as brothers and sisters walking this journey together need not forget most are fighting unseen battles. To all IC, PN, PFD patients, stay strong & keep fighting the fight. There is hope. I urge any suffering from a pelvic condition to reach out to me via email & I am more than happy to help guide you in advocacy and towards my specialist.
- Emily Gammell : icpatientadvocacy@gmail.com