What she had to say...

I'm Amy and I live in Maryland, and I've had my IC diagnosed since 2020. So a couple of years, but I've had bladder issues often my entire life and just finally formally got diagnosed in 2020.

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Off and on my whole childhood I had felt like UTI symptoms but nothing was ever done about it or diagnosed and then it kind of went away for a while until I was college age and every once in a while I would have issues and then it would go but nothing ever, no positive UTIs ever.

Most of my symptoms were more pelvic pain because I also have pelvic floor dysfunction. I had a lot of pelvic pain when I sat or doing too much, when I ovulate all that, and then in 2020 it got so bad that I started having the burning when I would go to the bathroom.

I would have burning pain and I knew that wasn't right. That's when I saw the doctor because I had already been dealing with physical therapists and this just seemed different so that's when I went to the doctor because I was having a lot of burning when I would go to the bathroom as well as the pain.

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Initially, I had some issues getting diagnosed with pelvic floor dysfunction, when the pain started it took awhile for the doctors to figure out. I had to go through all kinds of scans, MRIs, all of that because I had very specific pain in one specific area, nothing was ever found. Then a couple years later when it got bad again, I saw the physical therapist she got me to doing pretty good, not fantastic but pretty good, much better than I was.

But then in 2020, I had terrible stress in my life, my husband got diagnosed with Parkinson's disease and I started not feeling well. That's when the pelvic pain started turning into bladder problems and I was like okay this isn't right.

So I was like okay I'll see my general doctor and thankfully my general doctor is married to a urologist and they're in the same office so she was like okay you're in the right office just need to see my husband. So thankfully I just hopped over into the other room and they actually diagnosed me that day. They tested the urine, had me do the urine sample, nothing came up but then they measured how much urine is still under bladder and I was not emptied and I had just gone to the bathroom. So when the doctor came and saw me she was like you have IC because this and I thought that was kind of strange I'm like well I've never heard of that. She just gave me the list of paper, you know that dreaded paper that says you cannot have this this this this this this this this this this. All on the same day that my husband got officially diagnosed with Parkinson's.

It was a mixture of like what in the world and I'm glad that there was a name for it but they were so quick with everything. It seemed like it was such a big diagnosis especially once I got home and researched it more. It seemed like such a big diagnosis for such a quick amount of "here you have this".

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The first step that she did that day when she diagnosed me was send me home with the paper and had me start taking L-Arginine and stay away from certain foods. I thought that was a forever thing. Also, because my pelvic floor was so tight she put me on an anti-spasmatic medicine. So that was step one for me and that really started to help, it took about three weeks for it to really start to fully work but every month I was still having problems like constantly having flares of pain.

Then this summer I got COVID and I got the worst flair ever and nothing worked. I had already been two years on this Elimination Diet, of not having anything on that diet which extremely limiting. Then because I still wasn't really getting great relief from that, I decided to do more research and then you go down that whole Google Rabbit Hole you know and so I ended up being gluten-free, dairy-free, sugar-free and then all the things on the IC diet for two years.

I don't recommend it because then I was losing hair and all kinds of things and I was scared of food, scared of eating, I stopped going out to eat, stopped going to family gatherings, when I did things at church I just wouldn't participate in the food and it was just very depressing, very stressful.

My quality of life was terrible and it was very complicating when you're a mom and you're cooking for a whole family of five, trying to cook and provide for them while you're on a super restrictive diet just made it very complicated.

I was in a state of constant pain. I had been in a flare for about six months and just afraid to eat, just a hot mess. I was under the assumption that those foods had to be out of my diet permanently because nobody tells you until you start doing your own research.

I had somehow stumbled upon you in Facebook, thank God and praise the Lord, and then you started talking about no you shouldn't be limiting this it's too restricting. I'm like wait what I'm not supposed to limit this forever.

When I found you, Road to Remission looked like an excellent program and I had a registered dietitian friend that I had look at it but she was like "I've never heard of interstitial cystitis, they don't teach us about that in school" 

I told her I found this program and asked if she could look at it for me. She looked at it she's like this is actually a really good deal like you're getting a lot for your money she's like trust me on that. So I said okay, well I said I don't know anything about this lady, but she has the IC Collective so I can try that for a couple months if I like the way she teaches then maybe I'll go for it and do the whole thing.

I actually really liked the collective and once I saw how you taught that's what made me want to think about doing Road to Remission because all your education things are done fantastically, way better than Dr Google. You're such a good teacher so once I saw that and you were quick to respond to me about my questions and things like that I knew that you would be a great one to work with, so I started R2R. 

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Once I was in the program and we started trying to figure out my triggers, I thought it was going to be sensitive to everything because I had been in such a limited diet for two years and still not getting relief, I was just like everything I'm I'm sensitive to everything. I was convinced that I was sensitive to everything since I was not getting relief and at this point in my IC journey I thought that food was the only puzzle piece.

But in the program, there was a class about the different triggers, and I was like oh wait a minute you mean there's other triggers besides food. Through that, I realized that stress was my big trigger. There was another class on meditation so I started trying meditation, doing breathing exercises, and dedicated myself to the R2R program. This was gonna be my focus, that I was going to focus on me, I was going to get my health under control so I basically cleared my schedule and made sure I didn't plan anything outside which significantly lowered my stress. 

So then I started to start to feel better pretty quickly once I did that and started focusing on not stressing, deep breaths, I started walking every day because that's also when I would pray which also calms me and I just tried and started doing a lot of things like that. I made a focus of doing like art and journaling which is very helpful for me in lowering my stress level, anything that calms me down listening to music all of those types of things.

I also found out that hormones are another trigger for me. Since you encourage tracking everything, not only did I start tracking my food but I started tracking my stress levels and I started tracking my period which I had always tracked but I kind of linked it all together and I started noticing that I would flare every time I ovulated and also I start flaring right after my period like I start getting sore and then once I ovulate it gets worse.

I have now finished the Elimination Diet and found that I was only sensitive to like two things like what crazy and I've been able to add at least 20 things back into my diet. I still have a few things that I want to eventually test it's a few like spices like paprika and some spicier things that I would like to try that I decided I didn't need to do right away. 

I've done so well so far, I'm so much better, I would probably consider myself in remission. My symptoms are a lot less and I know exactly when they're going to flare and when I do flare I know how to handle it now, so to me I would think that that's amazing.

I'm very grateful for this program because I was not in good shape at the beginning. If I hadn't joined the program, I would still be suffering. I would still be eating the same 10 foods forever and being sad and not doing things that I want to do.

I love the support you get inside the program, I think that the support group is amazing, everybody is amazing, and it's one of those places where you feel safe. You feel like you can cry if you need to cry, you can talk about very intimate things that you need to talk about and nobody judges you and everybody listens and everybody has compassion because they're going through what you're going through.

When you have this condition you feel very alone because I don't know anybody in my personal friend group or anything who has Interstitial cystitis, so you feel like the odd person, like the weirdo of the group and then you go to the support group and everybody has it. 

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I learned so much not just from you and Beverly but from them because they have things that they've tried or they have other conditions you know some people have pelvic floor problems like I do and so you can ask every each other different things and you learn so much and just the support is so good.

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I would say probably within the first month I started feeling a lot better just because the stress was released once I had a plan in place.

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If you decide to commit to this program, which I 100% recommend, then you need to give it your all. It takes work, it's not something that you can just show up and you're all of a sudden gonna be better. You've got to follow what Callie and Beverly tell you to do, watch all of the videos and I'm one of those binge watchers so I watch all of them before I get into it because I want to know all the information first and to me that's super helpful and I highly recommend doing that.