Meet Gina Cafone, here's her story on how IC has changed her life, as she discusses how she has traveled across the country to find doctors that will help with this condition-especially in the later stages of this illness. She discusses the cost of medication, treatments, and surgeries living with a severe bladder condition. Additionally, she also explains how living with a debilitating bladder condition has affected her work, career, and how she has tried to stay strong while being a single parent at the same time.
Short Note: For anyone who is pregnant, given birth, has had any severe trauma to the pelvic region of your body(including lower back pain & your tailbone), I hope you will read what can happen to your pelvic floor muscles.
My back story and how I was diagnosed with IC.
Hello Everyone..My name is Gina and I am a long-term survivor of Interstitial Cystitis for the past 22 years. Many have difficulty saying the word let alone understanding what it is exactly. To give you a little idea who I am and what I have been through with this illness. I would like to first say that for most woman, pregnancy is an exciting time in their lives. In my case, I had a normal pregnancy- the usual nausea that comes in the first few months of pregnancy, the cravings, the exciting ultrasounds that take place throughout the coming months, and the kicking that happens when you realize you have a beautiful life inside you.
During my last month of my pregnancy, my doctor informed me that my baby was in breech position and that if he were not to move that I would potentially need a C-Section. At this time only being 21 years old and petrified of the pain that was involved, I was open to the idea of a C-Section. When the day came along in July of 1996, the nurse was prepping for the surgery. Little did I know what would really would take place prior to the birth. The nurse inserted a catheter for the first time, in which I screamed so loud my father told me he was able to hear me in the waiting area. It was very very painful but that was just the start to what would occur. I was then taken in the operating room to receive an Epidural (and yes, I was super scared but tried to stay still as much as possible). When we finally got into the surgery room, the Anesthesiologist asked me if I could feel the needle on my arm to make sure I felt the epidural and anesthesia working. At this time, I told him that I still felt it but within minutes my doctor began and I was able to feel the sensation of the machine cutting my stomach for the birth. It was then at that moment, I went into a panic and remembering screaming to the doctor that I felt the cutting and I needed to be put to sleep.
After the birth, I had a healthy baby boy but was disappointed I couldn't be awake to watch as he was lifted from my body. During the next few days, I felt an enormous amount of pain after the catheter was removed and I felt a lot of burning. Although, I thought it was normal because I was told that they needed to keep it in to make sure there is no infection after the surgery.
It wasn't until about 4 months later, I took my son on his first trip with me to the West Coast to visit family. I began to feeling burning as though, i was having a urinary tract infection. Unfortunately, being away I was unable to see my doctor and would right away go to the grocery store to purchase AZO, which is a supplement that helps with the burning temporarily. When I got back to town, I immediately contacted my gynecologist but he didn't see any signs of infection and he suggested I were to see a Urologist for the first time.
SYMPTOMS of What "IC" feels like on an every day basis-Besides feeling like a urinary tract infection every day of my life, it interferes with every part of one's life. Going to the bathroom up to 60 times a day for some. For me, I go every hour and if I couldn't make it to the bathroom, it burns and feels like I want to pull my hair out of my body. A normal person goes a few times per day and can hold it for a certain amount of time. It also feels like acid thrown on an open wound of your body, except it is all internal (because of the acid in the urine). Many will state it feels like "razor blades" because the lining of the bladder is scared and the more acidity in the urine, the more pain and burning that will happen. While you can't see what we go through, if you looked at our bladders on a scope, you would see scars that look like ulcers for some, and others severely red and inflamed bladder. We have a lot of pain in our lower abdomen, pressure, and experience other health ailments besides, such as (IBS-Irritable Bowel, Pudendal Nerve, Vulvodynia, Fibromyalgia, and many have depression).
There are times when one would need to run to the restroom because you can't hold it which can cause incontinence. On the flip side, I have the opposite problem, where I have retention and it sometimes takes a long time just to urinate and relax the muscles. Our pelvic muscles are weak and super tight and just like you have a trigger in your neck from a headache, our pelvic muscles feel the same way on an every day basis. It is difficult to sit and stand for long periods of time. Many need to sit on a special cushion to help relieve the pelvic pain associated with sitting and pressure on the pelvic muscles. Traveling is very difficult for us and car and plane rides are not an easy task. It is very hard to do a marathon walk, or do certain activities (such as bike riding, pilates, etc) because our pelvic floor muscles are weak. There have been times I have asked if I could do certain activities and would be discouraged from professionals.
My first Cystoscopy
At this time, I had no idea what to expect, since I've never been to a Urologist before. But on this visit, he stated that he needed to look inside the bladder in the office with a scope called a Cystoscopy. Little did I know, that would be the most painful procedure being awake. It was a scope that was put all the way into the Uretha to check the lining of the bladder. This is not suggested to be awake for someone with the amount of pain I was having. Oh course, I cried and screamed and could not bare the agony that existed with this. The doctor stated that it looked like an Overactive Bladder and began giving me medications. Unfortunately, I few months went by and I was working in the school district- at this time, I thought I was encountering another bladder infection. So I began to drink a lot of cranberry juice and go to the bathroom as many times as possible to feel empty. Unfortunately, I was still not feeling relief. So, I began to see another Urologist but was still not helping me.
It wasn't until my third Urologist that stated that it sounded like "Interstitial Cystitis" in which I had no clue what he was talking about, while I was only about 23 years old. He stated that the only medication on the market was "Elmiron" in which it costed a lot of money and took a few months to find relief from. I was open to trying it and didn't care about the costs because the pain was unbearable. It felt like I had an UTI every day of my life. I finally decided to take the advice from my Dad and went to see a highly recommended Urologist that was in the area in which I lived.
Elmiron & Other Medications that are being prescribed for IC
While Elmiron is still the only FDA approved medication on the market strictly for Interstitial Cystitis. The costs associated with this pill is enormous! Many can not afford this medication because the pharmaceutical industry is charging over $1,000.00 alone for this pill. The other medications that doctors are prescribing to help with the spasms & frequency associated with IC is Ditropan, Amphetamine, Gabapentin, and a few others that are under the category of antidepressants. Unfortunately, there are many side effects to these drugs and some can not take them do to drug allergies, or other chronic conditions. Many doctors are also now prescribing D MANNOSE, Marshmallow Root, Bladder Ease (Which are not FDA approved but more of a holistic medication) and even Probiotics to help with this illness on top of the other medications.
My First Hydro-distention
This doctor put me on more medications (the costs were getting higher) a lot of Trial and Error through out it all. I was then introduced to a procedure called a Hydro-distention (which stretches out the bladder to see the capacity of the urine you are able to hold with saline). This is an outpatient procedure that needs to be done at the hospital. This Urologist did in fact look inside the bladder with a different type of scope and gave me a firm diagnosis again of Interstitial Cystitis with an Overactive Bladder. At this point, I was on my 4th Urologist and felt confident in his abilities. Although, the costs of the procedure and the medications began to increase and I was receiving a lot of bills from the hospital for the procedure and other costs asssociated with it. As time went on, the medications were not as helpful and the hydro-distention put me in such a flare up that I could not walk for weeks. I had to take off of work and school, since at this time I was in college. So, I was given more medications to cope with the pain.
The "Bladder Diet"
One of the first things a doctor will tell you will a IC diagnosis is to watch out everything you eat that contains acidity, spices, and caffeine. That pretty much sums up a lot of food. The worst thing a "IC patient" can have is Cranberry, Orange, and Pineapple Juice. The higher the acidity the more painful it will be for someone with this condition. Ethnic foods are also very difficult because the higher the spice level, the more painful it is. While some IC patients can tolerate some foods better than others, it is also another trial and error. Many doctors will tell you to do the elimination diet to see what foods you respond to in a positive and negative way. Water has also been another discussion because many different types of water contain acidity and many have tested the alkaline in it. Further more, the more water you drink the better it will be so your urine is diluted because the acid in the urine can cause burning.
Shortly after, I was introduced to a 6 week treatment plan called "Bladder Instillation". This was suppose to help with frequency, urgency, and burning associated with urinating. Boy, this was the beginning of many catheters that were put inside my bladder. I was lucky at this time to have a patient nurse, who understood my level of anxiety and fearful behavior I went through agony every time I had to do this on a weekly basis. While, yes, the catheter was painful but so was the medication cocktail that was inserted through this catheter. At this time in the 90's the most common bladder drug instillation was the RIMSO-DIMSO treatment. It burned and burned and the way the medication is effective is if you can hold it into the bladder for 20 minutes. Each minute felt like an hour to me because for someone with IC, this was agony! and to top it all off, the medication made you smell like garlic for about 24 hours. These medications were not cheap! It was not being covered by the insurance, and I was responsible for all the 5 or 6 cocktail meds that were a part of the solution to be applied into the bladder (roughly about a few hundred dollars). Additionally, it costed about $40.00 just for the nurse to insert it into the bladder (multiply that by 6 weeks) Plus, I would have to go to a special compounded pharmacy to pick up this medication. All this while, I was a single parent on one income! At the time my son was younger and I struggled in pain, especially on days that I had catheter treatments done and I tried very hard not to complain about the way I was feeling internally.
The treatments began to get even more expensive and I was paying not only for pills to take but treatments as well. Not all insurances covered this type of medication and to top it all off, you can't walk for the next few days and I had to take off of work days at a time for a period of 6 weeks. Eventually, I would be on a monthly regimen but my body over the course of several years was getting immune to the medication. So, my doctor advised me to see a Urogynecologist out in Philadelphia who specialized in Interstitial Cystitis (which was my 5th Urologist). So, I was very optimistic and was well on my way to traveling a few hours at a time to see this doctor. But, the cost of traveling to another state was very expensive between the gas, tolls, and the parking associated with the distance. This doctor was always so busy, in fact, a few month wait so I was open to seeing the Nurse Practitioner in her place. She advised me that my pelvic floor muscles were weak and tight. At that time, I had no clue what exactly that meant. But, she recommended me to see a Pelvic Floor Physical Therapist in which there were none in the state of NJ at that time in the 90's & early 2000's except one who didn't even accept any type of insurance. There was one or two in New York but again most took only cash per visit.
Pelvic Floor Physical Therapy
When you think of Pelvic Floor Physical Therapy, one may think of Kegel exercises. This is not even close to what happens in this type of therapy. In fact it is hard for an individual with IC to do a Kegel (which would need the help from a professional). Pelvic Floor dysfunction are the muscles that surround the vagina and rectum area. Symptoms may cause pelvic pain, incontinence, retention, Vulvodynia (burning, stinging, and rawness in the genitalia) and even bowel dysfunction. For each of us, the reasons we may seek therapy may be for one or even more than one issue. Many may even go because the muscles after giving birth may be weak or low tone and cause spasms.
The place I finally found in NJ after searching and searching for this type of therapy was not covered by my medical insurance. I had to pay over $150.00 for the evaluation and then about $90-120.00 each visit afterwards. (Some professionals state that the best results are at least twice per week but in this case because this is expensive, most go at least once. The Pt's specialize in this area and most therapy is done with gloves on and the most helpful results are through internal muscles. The first time around, I did not feel a whole lot of difference to this type of treatment until later down the road. In which I will discuss on more of a personal level.
To fast forward a bit-It wasn't until I moved to Las Vegas in 2012, I searched and searched and eventually found a Pelvic Floor Therapist, in 2017, that began to help me. I had to do a lot of research and spoke to a lot of professionals in the field in order to find a PT that does pelvic floor muscles. While I am not 100 % at my best, she has been helping me through this illness, on some of my difficult days. While most days, it will help me get through a day or two without extreme pain, i do know that stress can irritate the bladder and cause a flare up. So, I try very hard to keep my stress levels down so that the PT that I am receiving will help and be successful.
As I discussed before, that stress is a "no no" when it comes to IC. It really is your worst enemy. It will exacerbate the burning and extreme pelvic pain that IC causes when I am in a stressful situation. Stress affects the immune system and having a chronic illness that will not go away can cause depression. Unfortunately, in the IC community we have lost many individuals to this chronic disease because the pain was so intense.
Additionally, It is also difficult to maintain intimacy in a relationship having IC. For many women/men intimacy can cause severe flare ups as well. While I will not get into too much detail on this, it is hard for a woman with IC to receive a yearly exam, let alone have a personal life at times. For men who have IC, they have difficulty with pain in the prostate area.
Many with IC are also missing days of work, not able to remain in their jobs because of the intensity of treatments, side effects from the medications, and able to cope with the pain from sitting or standing too long or not getting to the restroom quick enough.
Interstitial Cystitis is now a chronic disease that is protected under the ADA (American With Disabilities Act) along with one of the medical illnesses on the list for disability.
Career, Work, & Mental Health
I personally, can say that IC has medically taken away my ability to function in a few different career choices of mine because of the amount of years, I have been affected by this condition. Unfortunately, it has been getting harder instead of better. While I will never give up, I know that it can be disappointing when you work so hard to achieve success in your career to only be slapped in the face multiple times from an illness that will not go away. It is then when you begin to accept your limitations and what you can do instead of what you can't do. (Example: It was very difficult for me being in a classroom with children because I need to have access to the bathroom at all times; Unless another Educator was in the room) Another example: (When I was a Caseworker, I had a difficult time transporting kids to foster homes when I myself, needed access to the restroom). I have always enjoyed working in a position where I was helping people directly. I have had some wonderful jobs working in social work, education, and even a hospital setting and due to my limitations with the need of using a restroom and my Interstim Device, I need to be careful that I do not get hurt from behind.
This illness can definitely take a toll on your state of mind because just like any other illness like cancer, diabetes, kidney failure, etc...Many individuals I know with this, have had kidney problems, eye problems because of the medication, depression from having limited mobility, kidney stones, and even bladder removal.
So, while each person's journey may be different, the IC community have begun to support one another because medications have side effects, other organ's in the body are being affected, and there is no cure.
Interstim (Medtronic Bladder Pacemaker)
This has become a controversial issue for many with this device implanted into the body. While this was not an easy decision, I decided to try it because all the other treatments and medications I have tried were not helping. I was not living my fullest life for a woman in her 30's at the time. So, I made the conscious decision to move forward with this choice as discussed with my doctor. I received my first trial Interstim back in 2008. The trial caused me to be bedridden for a few weeks and I had bruises all over my buttocks & lower back along with the incision that was made on the side of my body and close to the tailbone for the wiring for the sacral nerve. The trial is used to allow a patient the opportunity to see if the two week trial would work for the bladder. It is not used for pain but to help with the constant trips to the bathroom, spasms in the lower pelvic region and abdomen along with urgency. Some individuals can urinate up to 60 times per day and lose a lot of sleep because they get up during the night so frequently that sleep is interrupted. Many are even having to self catheterize themselves.
My initial trial with this Interstim was quite a scary situation because I received a call prior to the day I was going to get the permanent device implanted. The doctors office stated that my secondary insurance was interfering with my primary insurance because the hospital was out of state. Therefore, if I were to follow through the following day for the surgery, I would be stuck with an $80,000 bill. But, the doctors office stated that it was a medical necessity to get another doctor asap because it was life threatening to get the trial Interstim out of the body within a 2 week period. So, I had to wait for the doctor in Philadelphia to make a phone call to another doctor in New Jersey that would take on my surgery without even having a consultation with me. It was a very scary time and I had to put trust into a doctor I have never met before to do a surgery that was permanent. All this because of the costs that are involved with this surgery.
The Interstim has a 3-5 year window
It is difficult for anyone with this type of implant to carry on with your every day life for a few different reasons. For one, it is important to keep getting monitored to make sure the Interstim has not moved and is working correctly. The Interstim battery life has a 3-5 window. Some may have the same Interstim for 5 years while others may be shorter. But, each surgery now is around $120,000 just to have it implanted. While health insurance covers some of it, you are responsible for the remainder. (Imagine having 3 surgeries already is the cost of a home).
One particular time, I went to see a Chiropractor and I was shocked from the electrical pulses they put on my shoulders for headaches I was getting. With this pacemaker, you can not have any MRI's. It is important to keep the Medical Card they give you after the surgery with you at all times- especially if you are driving or a passenger in a car.
Traveling is another important factor when deciding to have this done. It is important to let security know when you are going through the medical detectors and to understand that you will be patted down each and every time.
Going to a concert, a show, any type of sporting event, or even to the courthouse, you will need to let security know that you have an implant. My life has changed in many ways since I have had this done. For example: If I go to the movies, I know that I can't sit throughout the entire movie. I usually always get up to use the restroom, which at times can be frustrating. Things I use to do, have become limited (another example: I would not be able to jump off a diving board or go down a high waterside because of the impact it would have on the pacemaker device).
I have to say, while I may have limitations, at the same time, I still try and enjoy my life on days I feel well and do not feel sorry for myself. This illness will not define who I am!
There are going to be times when you are in vulnerable situations but in time you will feel more confident and want to educate others and inspire them to try and reach their fullest potential. While, this chronic illness has limited my career in many ways, I am beginning to accept that "it is what it is". It doesn't mean I am any less than anyone else. The only thing that it is hard to swallow is that my career choices in my life were more physical jobs and now I have to sit back and accept that some of the positions I may have wanted to excel at, would not be in my best interest. So, I am focusing on what I can do as oppose to what i can't do.
Over the past few years, I have tried many different compounded medications that were used to help with Vulvodynia. Unfortunately, with IC comes Irritable Bowel, Vulvodynia, and Fibromyalgia, & some other medical issues. While one may have IBS it doesn't mean they will have another contraindicated medical problem..The cost of the compounded medications are very expensive as well. I have tried Traumeel, Ketamine, Lidocaine, Amitriptaline, Gabapentin, and even Estrogen cream to see if the burning would stop. Unfortunately, many of these did not help the problem. The last resort was a compounded medication called Capsaiicin. It is not the one that is over the counter. It is made from a Compounded pharmacy but unfortunately these medications are at least $50.00 per month to try. Another type of compounded medication is diazapam which is a Valium suppository used at bedtime to help relax the muscles to urinate.
Trigger Point Injections & Pudendal Nerve Injections
Just recently, I decided to try the pudendal nerve injections. I tried the trigger point injections a few times in the office (which was painful and very hard to keep still) it was done into the muscles of the bladder but it only worked for me for the day I did it. Moving forward, I decided that I didn't want to put myself through another injection in the doctor's office without being put to sleep. So, I went to a Pain Specialist who stated that he has not done many Pudendal Nerve injections but that if it were to work, it would be done in an outpatient surgical center through the rectum and results would be immediately. So, with everything I have been through, the cost involved would be a few hundred dollars for the co-pay of the procedure and decided it was worth me trying. But, unfortunately, the results I got were not long-term and I still had the burning. So, again...I am on a mission to find other options in order to go on in my day.
Botox to the bladder or muscles
Many have also resorted to Botox to the bladder or into the muscles for burning. I have not yet done this treatment because at times I have retention and can am in fear of the side effects. I do not urinate like a "normal person" so I have some uncertainty because I have tried many of the medications and treatments that are on the market.
The Journey Continues
My journey with IC has been a long 22 years with many treatments, medications, doctor visits, loss of work, and years of patience trying to find the right therapy and treatments for myself. While I continue to fight this battle, for anyone experiencing frustration and heartache, do know that we have come further in the fight to find a cure, find more medical doctors who are willing to research more medical treatments, and medications that will have a longer effect on this chronic illness. Having this disease, has exhausted thousands of dollars for many of us but closer to finding the ways to help with the on-going pain associated with this condition. I hope to continue to tell my story, advocate for all of the IC community, and believe that in time more medications will be on the market for this debilitating condition that has already taken the lives of many IC patients around the world who could not fight the fight anymore. I will continue to have "HOPE" for a cure and continue to stay connected to the IC community and wonderful people I have met along the way who struggle with this illness.
September is IC Awareness Month and Teal represents all of us who struggle with chronic pelvic pain on a daily basis. So please be mindful when you see the color teal, it represents Interstitial Cystitis-Painful Bladder Syndrome and do understand that any one who is about to give birth or have had children may be experiencing pelvic dysfunction without even knowing it. So please get checked and pray for all of the IC community as we stand together with hopes of finding more medications to treat the lining of the bladder, treatments, and the ultimate goal of finding a cure.
More stories coming soon...
" Bladder Me Crazy" Interstitial Cystitis,
Until next post... Stay strong, keep fighting, and never give up!