Life with Interstitial Cystitis
An interview with River & Quill
Welcome to Callie from River & Quill, who shares her story of life with interstitial cystitis.
I am currently undergoing tests for bladder problems, so I was really happy when Callie agreed to speak to me and share her story.
So, I am Callie Dixon.
I run RiverandQuill.com I have been running a blog since my son was born, but I recently switched it over to WordPress and rebranded it to be a chronic disease and mental health support blog.
Would you be able to share a little bit about your condition?
Interstitial Cystitis can present itself in different ways in different people, but usually, symptoms include urinary frequency, urinary pain, feelings of fullness even after completely emptying your bladder, and what I like to call the “bruised” feeling. You just sort of feel your bladder, ALL THE TIME. It is all caused by a compromised bladder wall and doctors still aren’t sure why it happens. There are various treatments that definitely help, but, again, different ones work for different people. My symptoms are very well under control these days, with flares here and there.
Do you find with your IC that anything triggers it? Or does it just come and go?
I haven’t found a trigger yet for mine but I know the feeling and it’s the worse of my issues. I had one 48 hrs period that hospitalised me because of the pain and uncomfortable feeling and I was going to the toilet every 5/10 mins and even when I passed urine I felt my bladder filling up straight away.
It was horrendous.
I am so sorry!! That is terrible!!!
I believe hormones are my main trigger and emotional stress. My symptoms started six months after my daughter was born. They didn’t let up for over a year. It was pretty terrible. Now I feel good most of the time. I flared for a couple weeks this summer, and I tend to get a little irritated around my period, but for the most part, I have it under control.
Oh, I’m sorry to hear that. Do you find anything in particular works to ease it or any remedies at all?
Yep – lots of things together I think help. I’m on an off-brand Elmiron, stress relief, hot pads, sometimes ice packs, vitamin d, a series of other supplements that I am deficient in, eating well, essential oils, removing chemicals in my house and on my body, and a biggie: testosterone.
My doc figured out that I was very low and since I started taking it I feel sooooo much better. Oh and I use desert harvest aloe, as well as cystoprotek. And when all else fails: lots and lots of water, marshmallow root tea, and peace!
Those sound really good.
Could you explain how you were diagnosed? What happened and how was your IC discovered?
Sure! I woke up one night and my bladder felt a little off like I was getting an infection or something. It was almost the weekend and I didn’t want to have to endure a bladder infection all weekend (insert giant eye roll here) so I went to my OB.
The Nurse Practitioner prescribed meds based on symptoms but then I got the call on Monday that I did not, in fact, have a UTI. She had some other theories for why I was having pain (pelvic floor issues), and I ended up at the physical therapist. Did you know there is a physical therapist for your vagina? There is. And I love mine. And I call her my vagina therapist. After seeing my vagina therapist for a couple weeks, I asked if my symptoms could be caused by something else. She said it was very rare but I may have Interstitial Cystitis (PS It’s not actually all that rare). I went home and immediately consulted Dr Google and was sure I had IC.
I’m a bit of – ok, a lot a bit of- a hypochondriac so my friends and family assumed I was up to my usual worrying about nothing. BUT, one of my friends referred me to her friend’s doc – lol. Apparently, she had similar issues with my own and had really liked this doctor. I set up an appointment because it had been weeks of the “have to go” full bladder feeling, pain, and just terrible anxiety over the fact that I had no idea what was going on with my stupid body.
About one month into symptoms, I saw the doctor my friend had mentioned: a urogynecologist with the bedside manner of a turd. However, he did say he could help, and I loved him for that. He told me to come back in a week and they would do a cystoscopy, which is the doctors’ way of saying “camera on a wire, up your pee hole and into your bladder while you’re awake”. I wrote an entire chapter about the experience in the manuscript I am trying to get published, but, for the sake of an interview that isn’t twenty pages long, all I can say is that it was terrible, but I ended up with a diagnosis and a reason for my symptoms: the big bad IC.
Omg, that sounds horrendous!!!! And painful.
I’m waiting for an appointment with a urologist. I haven’t got a diagnosis confirmed yet but it’s been batted around and from what you have described there it sounds exactly the same as what I have. For as long as I can remember I’ve had repeated urine issues. Going to the toilet and feeling like my bladder is filling up straight after.
I’m wondering if you have any other illnesses or problems like autoimmune diseases that may contribute to IC or set it off?
Sorry! I feel for anyone figuring out IC.
I will say that you WILL get it under control. My doc believes it is an autoimmune issue in and of itself. I avoid dairy and gluten and eat lots of fermented foods and probiotics to keep my gut functioning well – they’re finding that certain foods can break down our gut lining and can cause autoimmune issues. No other autoimmune diseases that I know of – praying every day it stays that way.
Have you tried desert harvest? It’s a lifesaver for a lot of people with IC.
Oh no, I’ve never heard of desert harvest what is it?
Hopefully going gluten-free will help. I’ve recently been diagnosed Coeliac so have to go gluten-free anyway.
Are there any other elements of IC that impact your life?
Apart from the uncomfortable feeling and pain you get I mean.
Does it cause any other issues that cause you problems?
Oh definitely. It has made me have to rethink everything – having a chronic illness makes you feel very isolated and your sense of self and identity take a major beating. I am mostly on the other side of that, but I still have moments when I wish I didn’t have a “disease”. I wish I could have a glass of red wine without sirens going off in my pants, but it’s what I have to deal with, for now. So I try to make the best of it and keep progressing, and learning and using what I have gone through to help others. Desert Harvest Aloe can be bought from Amazon or through Desert Harvest’s website. I highly recommend it to anyone with Interstitial Cystitis.
It soothes the bladder so much. And yeah – changing your diet should definitely help.
Has your Interstitial Cystitis prevented you from doing anything in your life or is there anything you would like to do that you are unable to?
IC prevented life, it seemed, for a while. But I am happy to say that I finally have it back. I still can’t have red wine, as it irritates my bladder, but I can do just about everything else that I could before.
I say all of that not to make people who can’t feel worse, but to give hope to anyone who believes that they will not get their life back. It’s possible. My disease didn’t win.
Thank you so much to Callie for sharing her story and her tips on managing and dealing with Interstitial Cystitis.
If you would like to follow Callie you can do so by visiting here:
Possible Triggers For Interstitial Cystitis
- Coffee & Caffeinated products
- Food and drink containing artificial sweeteners
- Hot peppers and spicy foods
If you think you may be suffering from IC, please consult a doctor.
Keeping a food diary may be useful as well, as you will be able to keep track of your potential triggers.
Following an elimination diet may also be beneficial. Try caffeine first and Gluten.
Eliminate them from your diet for several weeks and see if symptoms improve, then gradually reintroduce them. If your symptoms return to know to remove them completely.
If you would like to try any of the items that have been mentioned in this post, you can do by clicking the links included in the post.
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Also published on Medium.