After the horrible doctor experience, I decided I needed to figure this out on my own. I continued to research online and was almost certain what I was dealing with, so I started ordering a bunch of supplements to help IC. Anything that promised to help the pain and frequency. CystoProtek, D-Mannose, Aloe Vera were a few of them.
None of them worked.
I read about the IC diet and how acid effects symptoms. I started buying white chocolate (which I never liked, but I couldn’t fathom going cold turkey on chocolate), low acid coffee, and took tomatoes out of my diet. I was now pregnant with my 2nd son and spent a lot of time researching as my symptoms continued to increase.
I was peeing up to 40 times a day at this point and the pain was constant.
When I had my son by C-section at the hospital my symptoms went away for the first time in the 1.5 years since it started. I was intrigued by this, and wondered if it had to do with the anesthesia, strong pain meds, or antibiotics. I kept a journal and wrote down anything of significance. I feel this is an important part of my recovery and helped me put the many pieces together eventually.
Sadly, the symptoms returned full force once I was back home and off all the meds.
A few months after this I decided I needed to go back to a urologist. I searched online for a female urologist in my insurance group and made an appointment. I felt so much anxiety going in that day, I remember I was shaking worried how they would treat me.
Thankfully this experience was much better than the other doctor. I filled out a long questionnaire about my symptoms and how long they had been going on. I peed in a cup as usual and there was blood in my urine.
The doctor came in and spent time with me asking detailed questions. She left for about 10 minutes and came back with a packet of information for me.
She told me I had Interstitial Cystitis. This was an incurable disease without treatment options that work for all patients.
She said they can do a procedure like a Cystoscopy where they also put fluid in my bladder and blow it up to look at the tissues if I wanted to be sure. Due to the severity of my symptoms she didn’t think this was necessary. She explained this can make the pain worse for a few weeks after, but in some women, it can help symptoms after the initial pain and they come in for these treatments every 3 months. She advised me against it as a first line of treatment. She prescribed by Elmiron (very expensive) and amitriptyline (an antidepressant that is supposed to relax muscles) and said it can take 6 months to work, with a 40% success rate. I would have to be on these meds my entire life and for reasons they do not understand, it can stop working at any point. She explained bladder removal could be a last treatment option if all others did not work. I got a booklet about the low acid diet and she told me I needed to start it right away. I explained I had tried it in the past without success, she informed me it can also take time to work. Apparently, everything takes time to work with IC, if it will work at all.
I left the office feeling sad but at least I finally had a real doctor telling me what I already knew. I went home and started researching the side effects and cost of the medication. I ripped up the prescriptions and decided I would get out of pain on my own and decided I would look into more natural options. Looking back, this was not smart. Anything that can help get you out of pain should be tried with this illness in my opinion.
I had the idea in my mind I would figure this out and heal it, and in a few months, I would be fine. It actually took another 6 years...
You can find more in my book, Healing Through the Pain: How I Overcame Interstitial Cystitis
I was now spending hours online every day researching my symptoms. I kept coming up with a word I could not pronounce or understand “Interstitial Cystitis”.
As I read about it, I did not want to believe this is what was happening to me.
“Not easily treated”
“Doctors do not know cause”
“Pain as bad as end stage bladder cancer”
I did not want it to be IC. I had never heard of IC before this, as many people haven’t. IC was not very profitable back when I was diagnosed. Typically, the general public only learns of diseases when the pharmaceutical companies come up with pills to treat it and begin advertising. There were not many pills to treat IC, and what they did have was very expensive with a low success rate. Elmiron was hundreds of dollars a month, and took at least 6 months to begin to work. You had a 40% chance it would help. As a bonus, your hair can fall out when you take it!
I was only 25 years old. I could not imagine living another week with my symptoms, and now I was reading I could live with it for the rest of my life?
FEAR. Fear is what I felt constantly.
Fear at my constant pain, fear I was a bad mom because of my pain, fear I could not work anymore, fear I could not hide my symptoms, fear everyone would think I was lying, fear I could not find a way out of the pain, fear there was no bathroom when I went somewhere, fear of bad traffic and being stuck in the car.
Fear of the life I was losing and the dreams that were being crushed.
I went back to the urologist and told him about IC and what I was reading online. He agreed to do an endoscopy on me to look for symptoms. This is where they go inside your urethra with a camera and look around for open ulcers and inflammation – the hallmark traits of IC.
Why was I the one telling my urologist about IC? I had been to him multiple times before this and he never mentioned it. He kept giving me infection tests and would send me home telling me there was blood in my urine. You would think after the 3rd or 4th time he would have mentioned something else. Instead he just kept shaking his head at me.
I went in for my endoscopy appointment in the office. The nurse had me sit on the chair and lay down with a blue paper sheet over me. She inserted a numbing shot up my urethra and then told me, “This may hurt a little”. She proceeded to put a camera up my swollen inflamed urethra while I screamed out bloody murder.
She had to keep stopping due to my violent twitching away from the pain.
The physical pain was the most intense I had felt up to that time in my life. I had hot tears rolling down my cheeks and my entire body was shaking in fear. The searing burning pain in my urethra felt like it took over my entire body.
I later found out urologists put you under anesthesia for this procedure when they suspect IC because of the pain. Not this awesome doctor!
The nurse stopped and walked out of the room. The doctor came back in. He told me I didn’t want to know what my problem was since I couldn’t cooperate. He said to get my clothes on there was nothing more they could do.
I left the office humiliated in massive pain, telling myself I would not ever go back to the doctor. I felt defeated, alone, and shameful.
To be continued...
I was 25 years old.
It seems like when I am following the diet I know is best for me, the paleo diet, I seem to make better decisions in all areas of my life. I’m motivated to stick to my work out routine, I have more energy, and my self-esteem is higher. My depression stays manageable. My weight stays consistent.
The opposite is also true.
When I get on the merry go round of sugar, dairy, and gluten free grains and snacks I start making bad decisions in other areas of my life. It feels easier to skip the gym, get up later, have another drink and so on. I start eating more and more bad food slowly and then I can’t get my pants on comfortably and I realize I need to stop! Before I know it, my depression is back full force and it feels like I have to climb a mountain to get back on track.
I once heard someone say if you feed the good dog it gets a bigger appetite and you crave more and more good. Start feeding the bad dog instead, and the bad dog gets bigger and bigger. It feels harder to go back to the good.
Maybe this is because I have a black and white personality at times, but it’s what I know is true for me.
I’m done trying to change my core self.
I understand certain aspects of me will not change now as a 38-year-old women. I need to take what I have learned and work with it instead of trying to fight it. Fighting against who you are takes a toll and creates unnecessary anxiety. Its ok to be you!
Even if YOU are not a consistent, grey area, controlled patient person. If you are this person, you might find it easier to switch between feeding the good and the bad, balance comes naturally for you. I often think life would be easier this way, but it’s just not who I am.
They key is to understand your personality and work with yourself. Love yourself where you are and find ways to accommodate your intrinsic being to find your own place of peace and balance, whatever that may look like in your life.
What I have learned about me is that everything good starts with what I put in my body consistently. Spirituality, self-love, relationships, career – they all naturally flow when I am feeding my body consistently what it needs to thrive.
Do I love myself enough to parent myself and say no to the bad dog most of the time?
Let’s face it, feeding the good dog all the time and ignoring the roaring loud bark can be HARD. Doing good hurts at times. Sometimes the bad dog does NOT stop barking! You know if you just throw a pint of ice cream and a beer down his throat he will shut up! For a little while, until the next day when he wakes up stronger than before you fed him in the first place. Now he wants to be fed even more!
Feeding the bad or feeding the good? Both create pain. Feeding the good will not always bring immediate relief.
You will feel the pain of the good in the moment, when you really want to do that thing you know you shouldn’t. You will might have cravings, feel anxious, agitated, maybe sad you can’t have what you want. It will hurt, for a little bit.
The beauty in this type of pain is it creates momentum. You get stronger and stronger and it gets easier to resist the bad next time. Your self-confidence rises and you feel proud of yourself. You realize you have what it takes to change other areas of your life.
You start to overcome. Your goals come to fruition!
If you feed the bad, you will get immediate relief! The dog immediately stops barking, but then slowly traps you into making more bad decisions. You will feel pain later on. Slowly you might feel hopeless, trapped, frustrated. Like a failure. You might think you will never reach your goals. The bad feelings start to outnumber the moments of relief.
I have to ask myself as I struggle between the two more often than I wished.
Was it worth it?
Times of failure can be used as reflection to starve the bad dog!
Which dog are you feeding today?
Its Friday night and you’re watching your favorite Netflix show and a thought pops into your head! “Ice cream would be really good right now!”
You’re at work, its midafternoon and your start to feel like you’re going to fall asleep at your desk. “I should go to the vending machine and get a sugar coffee!”
Finally, a night out with friends, I need this! I am going to eat 2 buckets of free chips and salsa with my 3 margaritas and 45 tacos!
Ok maybe its 3 tacos but you get the point. We all having cravings. You’re not weird for having them. Our brains get all sorts of clues that it’s time to eat! Why is it we don’t crave green beans, broccoli, and chicken?
Those healthy foods just aren’t packed with the fat, sugar, and chemicals that scream at your brain to GIVE ME MORE! Food companies know what they are doing, how else would they stay in business? You crave what is most desirable to your brain, NOT your body! Your body would choose grilled chicken over breaded chicken wings drenched in sugar sauce any day. Too bad our brains make the decisions.
Fortunately, there ARE ways to bust the cravings. It just takes a little planning and mindfulness.
Substitute: The next time you get hit with a sweet craving, try eating your favorite fruit. Salt and crunchy craving? Try eating unbuttered popcorn. Chocolate attack?
Swap out chocolate for dark chocolate. It’s better for you and has less sugar. When you want ice cream try a dairy free frozen fruit smoothie. You can even freeze it so it has the ice cream taste. The point is to try to pack the most nutrition into your cravings. Your body will thank you.
Distract yourself: Surely you love all sorts of things besides food. What is one thing you enjoy that has nothing to do with food? Do you like to take long bubble baths? Internet surfing, video games, reading, listening to your favorite jams? This will be specific to you. When you feel a craving hit and you know you’re not truly hungry, then force yourself to do something else you love. If when you are done, the craving is still there, allow yourself a small portion and congratulate yourself for not eating a huge bowl of ice cream.
Eat! You might be having a craving, because you are actually hungry for a satisfying, healthy meal. Your brain is saying eat the candy bar, your body really means give me a big chicken salad. What time is it? When is the last time you eat? If you are having a craving for a treat but you really need to eat healthy substantial food, eat the meal first and then see how you feel.
Eat before you go out to eat: This seems counterproductive but it works. When you are planning on going out to eat or attending a Holiday event eat a protein snack before you go. The worst thing is to show up starving and have no self-control. Try eating some hard-boiled eggs, nuts, or cottage cheese. Whatever you like that is high in protein. Protein is one of the most hunger satisfying nutrients and will help curb your appetite to make better choices.
Plan Ahead: Bring healthy snacks to work and keep them in your car. You don’t want to be left with a massive craving with no food anywhere near except the vending machine filled with candy and chips.
Visualize your goals and mediate on your motivation: Once you are clear on your motivation for wanting to lose weight, write it down. Put it on your fridge or in your pantry. Make it your screen saver on your phone or computer. Look at this goal every day. We are terribly forgetful as humans! We can feel totally ready to make a change and then a few days later we forget as the busyness of life gets to us. Make sure you can’t forget!
You are worth this! You are bigger than your cravings! Your goals matter.
Giving into cravings can sabotage all your weight loss efforts, but it doesn’t have to be this way. You can plan ahead and beat them. Next week you won’t even remember the fast food meal, the snickers bar, or the cheese fries. What you will remember is what the scale told you earlier this morning. It’s just not worth it. You will look back in a few months and you will be proud of your accomplishment, your weight loss, and your better health.
You got this!
Melissa is the Author of Healing Through the Pain How I overcame Interstitial Cystitis. She writes about health (physical, emotional and spiritual) from a vulnerable place, after overcoming Interstitial Cystitis and still battling emotional illness. She is passionate about helping women realize their ability to make changes and move forward from difficult situations in their lives.
Disclaimer: Articles on this website express the authors opinion only and are not that of any employer. Anything written on this site may not be copied or written in any form without the authors approval. Author reserves the right to delete any comment that she believes is hurtful, inappropriate, or not helpful to the discussion.