Hope for healing: a personal update on my health, how things are going, and more info about my interstitial cystitis diagnosis
Update 5/6/2019: after several years of trying different things for my bladder health, I found out that I had adenomyosis and ended up having a hysterectomy. In my case, my bladder/urethral pain was not due to interstitial cystitis at all, but was partially due to the adenomyosis. Certain foods can also cause recurrences of my bladder/urethral pain, but I am 90% pain free now!
Hey friends! It’s been a little while since I’ve posted recently, I’ve been hard at work creating an online fitness program that has taken up most of my time lately (that’s officially launching on the 17th!). But rest assured my more regular posting will resume soon. I already have a recipe lined up for this Friday!
I wanted to stop in and post an update on my health since I’ve still been working through some bladder issues. I had originally been diagnosed with interstitial cystitis a few years back, but a couple months ago the urologist said that’s not what I had. So I’m in limbo right now not knowing what I really have.
- Read up on the posts about my health journey (in order by date):
- Living with IC: Finding hope through the pain (December 2015)
- Interstitial Cystitis Resources and Helpful Tips (this post) (December 2015)
- Misdiagnoses, Hormone Imbalance, and Life (February 2017)
- Hope for Healing: Health Update and IC Diet (this post, July 2017)
- Mona Lisa and a New Diagnosis (January 2018)
- Adenomyosis and Surgeries (November 2018)
Back in December, the urologist said I had trigonitis inflammation, but no IC. I took a round of antibiotics to see if it would help and it did help, for a few months anyway. The pain completely went away. But then the pain slowly started to come back. No!
I went back and got a second round of antibiotics to see if it would help this time. The second set of antibiotics didn’t seem to help this time. The pain started to come back again. I couldn’t figure out what was going on. The pain is still much better than it was before, but I knew it was coming back.
Maybe it’s IC, Maybe It’s Not?
My physical therapist (who also does pelvic floor physical therapy) lent me a book to read that was written by a gynecologist/urologist back in the 80’s. Even though it’s an older book, it still had some interesting points. I would love to see the book revised and re-written one of these days!
One of the things that I found interesting in the book is that the author says IC is a progressive disorder. Meaning that even if you don’t have the “classic” signs (ulcerations, bladder shrinking, etc.) it doesn’t mean that you don’t have IC. It just hasn’t progressed to that point yet. Interesting!
The author in the book also mentions that cranberry extract is great for people with UTIs, but it will cause irritation for those with IC. So I decided to do a little test: I took some cranberry extract for a while to see if it helped me or made things worse. It definitely made things worse, and I stopped taking it.
Another interesting thing the urologist in the book mentions is that IC was caused by a missing mucosal layer on the inside of the bladder. That protective layer is missing somehow and exposes the other layers of the bladder to the damaging affects of acid and chemicals in the urine. Sort of like leaky gut, only in the bladder.
Healing can happen if adjustments to diet are made to reduce acid and irritation, allowing the protective barrier to regrow.
This completely makes sense to me! I definitely know that diet is huge for me. My pain lately hasn’t been nearly as bad as it has been in the past, but I want to do everything I can to keep it from getting as bad as it was before.
Hope for Healing
I discovered that the antibiotics did help, but I’m still careful with my diet. I’m finding that nitrates and nitrites bother my bladder, so I try to opt for uncured meats as much as possible. Nitrates, nitrites, and MSG are big irritants for interstitial cystitis, but I hadn’t paid much attention to it before.
This time around I have been really paying attention to the Interstitial Cystitis diet, trying to cut out or at least reduce high acid foods, spicy foods, nitrates, nitrites, etc. and it seems to be helping a lot. I still need to work on drinking more water (I always struggle with that!), but I feel like I’m making progress.
One thing that has helped me mentally too is that I also read this blog post from Jessy (that blog post is no longer available) about how she healed her IC with a strict diet, and that gave me hope. It took her 3 years, but she did it, and her symptoms were much worse than mine.
So right now, I’m not completely sure if I have IC or not, or if I just have inflammation from previous infections that gets irritated with different foods. The urologist had told me that trigonitis can be irritated by different foods, too. If it’s just inflammation, I need to find a way to get things back to normal with the help of diet as well.
Even if it’s not IC, I know that there is hope for healing, I just need to get my nutrition on point. Whether it’s IC or not, I seem to do better when I follow the IC diet, so I’m going to continue doing that for as long as it takes to kick this thing completely, whatever it is. I’ll keep you posted about my health journey so you know what happens!
Sarah Jane Parker is the founder, recipe creator, and photographer behind The Fit Cookie. She’s a food allergy mom and healthy living blogger based in Wyoming. Sarah is also an ACSM Certified Personal Trainer, ACE Certified Health Coach, Revolution Running certified running coach, and an ACE Certified Fitness Nutrition Specialist