Living with interstitial cystitis? Dealing with the chronic pain can be tough, but with a good support system you can find hope through the pain
Update 12/23/17: After I wrote this post, I got a second opinion from a urologist who determined that I didn’t actually have interstitial cystitis.
Read up on the posts about my health journey (in order by date):
- Living with IC: Finding hope through the pain (this post, December 2015)
- Interstitial Cystitis Resources and Helpful Tips (December 2015)
- Misdiagnoses, Hormone Imbalance, and Life (February 2017)
- Hope for Healing: Health Update and IC Diet (July 2017)
- Mona Lisa and a New Diagnosis (January 2018)
- Adenomyosis and Surgeries (November 2018)
Hey friends! Today I want to get personal, which is not something I always do. I’m a pretty guarded person by nature so it takes a lot for me to open up about certain things. As you probably have already noticed, I don’t post a lot of selfies on Instagram for that very reason 😉
Since I really feel that being open about my health problems can help other people struggling with the same things, I’m open to sharing about my health issues. I’m a health blogger who isn’t in perfect health. But that’s a normal, and it can be a good thing since I can write about my experiences and hopefully help someone along the way. Everyone has at least one health problem in their life they would rather not have, so it would be silly of me to pretend that I’m perfect and don’t wish things were different sometimes.
In all truthfulness, I have more health issues that I care to. I have often felt betrayed by my body, that my body was working against me, that I couldn’t get anything right, that everything I did made my body practically implode. But I certainly don’t have as many health problems as some other friends and people I know, and for that I choose to be grateful instead of bitter.
A couple of years ago I was diagnosed for the first time with interstitial cystitis (IC). I was diagnosed with it recently, but it’s something I have had for years and years, probably since I was a child. We just never knew what it was until I found a new doctor (who I am SO grateful for!!). I have mentioned my IC a bit before on my Instagram account but I haven’t really written a blog post about it yet, so here goes 🙂
Interstitial Cystitis is also called Painful Bladder Syndrome, my doctor also calls it bladder ulcers. It’s a condition where there can be tiny ulcerations in the wall of the bladder. It has often been misunderstood and misdiagnosed, but doctors are finally seeing it as a genuine medical concern in recent years. Some doctors still don’t believe that it exists, which is crazy! I’m lucky I found a good doctor who helped me figure out that I had IC.
A Few Symptoms of IC:
- Painful urination
- Frequent urination (sometimes I have to leave in the middle of teaching my fitness classes to use the bathroom!)
- Scar tissue buildup and stiffening of the bladder wall (fribrosis)
- Pain during sex
- Incontinence
- Lower abdominal pain
- Ulcers in bladder wall
Lesions and ulcerations with IC – illustration from Durward Black, MD
When you have IC flares, it feels like a urinary bladder infection, but there is no infection, just chronic inflammation. I remember going to the doctor several times over the years to get checked for bladder infections but there was nothing there. Before I found my new doctor no one could help me figure out what was wrong. Talk about frustrating!!
IC can be so depressing because there are no cures for it, and few treatment options. Doctors still don’t really know what causes it, although for me it has to do with food intolerances and allergies, at least in part. There are treatment options available that help to manage symptoms, but no permanent cure yet.
Some facts about IC:
- Of the 700,000 people with IC, 90% are women
- IC symptoms get worse during menstruation
- Flares can lead to scar tissue buildup (fibrosis) in the bladder, which can also lead to decreased bladder capacity
- Symptoms can vary day to day, and week to week (sometimes hour by hour in my case!), or constant. My symptoms vary depending on my activities and what I have eaten
- IC can also be associated with other disorders like fibromyalgia, IBS, and vulvar vestibulitis
- Some medical professionals are considering IC a disability since severe cases can disrupt a person’s normal life activities
Getting a diagnosis of interstitial cystitis from my doctor was a mixed blessing: I was relieved that I finally could put a name to this problem I had for years, but at the same time it was extremely discouraging to suddenly be told that you have an incurable disorder and will be in pain off and on for the rest of your life. People with IC often fall into depression and some estimate that suicide rates are 3-4 times higher among people with IC. And for someone like me who already struggled with depression, having IC was hard to deal with for a while.
IC was something that I had struggled with off and on for a while, but it wasn’t anything that I felt was a huge detriment in my life at first. My doctor put me on antihistamines (Singulair and Claritin) to help. And that did help for a while, until our long bike ride in August.
After our long bike ride this summer I had the worst IC flare I have ever had. We rode 100 miles in 2 days, I was super proud of my accomplishment! But my bladder had other ideas. I was in constant pain for over a month after our ride. I wasn’t sure whether it was the bike ride itself or the gels and electrolytes I was consuming during the ride, or a combination of both.
After my initial diagnosis I was feeling pretty good about things: I was doing better, the antihistamines were working, and things were looking up. After that bike ride the reality of what I had really hit home. I cried a lot and was got depressed thinking about dealing with this pain for the rest of my life.
I had to contemplate the thought of giving up things that were really important to me: sex, exercise, good food, travel. It was heartbreaking. I had been on Welbutrin for about a year and had stopped taking it this spring (with my doctor’s guidance) so my body was still adjusting to being off of that medication, too, so there were a lot of health changes going on at once that made my late summer a little tough.
I went back to my doctor and we started Elmiron (currently the only FDA approved drug for the treatment of IC) in addition to the antihistamines Singulair and Claritin that I was already taking. it didn’t go away until I cut out coffee and caffeine completely. Once I cut out coffee and caffeine (even low-acid coffee bothered me), I started to improve.
There is somehow a correlation between having IC and IBS. I have both and there are many people who have IC have IBS as well. They seem to go hand in hand a lot. I know that my food intolerances trigger both my IBS and IC, so food can be a difficult thing to navigate for me. I’ve mostly given up chocolate, and coffee, two of my favorite foods, to help my IC, and I’m watching my acid intake as well. Chocolate kills me these days – I can have a tiny bit but if I eat too much of it my bladder starts hurting 2 hours later like clockwork. It’s really quite bizarre sometimes.
It’s hard not to feel deprived when I have to give up some of my favorite foods, but I have had to give up a lot of my favorite foods over the years since I was a child (dairy products, eggs, wheat, soy, brown rice protein, etc.) that I’ve gotten used to it somewhat and I have worked hard not to be attached to food. I let myself have coffee maybe once a week now as a treat, but I stopped drinking it every day like I used to. I actually feel better not having coffee every day, I think it has helped my IBS as well, so that has been a blessing!
Right now, I’m doing better. My pain has improved but I have to really watch my diet so I’m not getting flares again. I have noticed that exercise seems to bother my bladder, and I’m really not liking that at all since I don’t want to give up my favorite activities! Intimacy has been hit and miss, but now that I know what I’m up against I can try to prevent flares and pain by drinking a lot of water and avoiding acidic foods and allergens. I keep praying that God heals me, permanently!
I am so grateful that my husband is extremely supportive and compassionate! Having a supportive group of family and friends makes all the difference. I don’t know where I would be right now if I didn’t have people who loved and supported me throughout this journey with my health. There have been so many ups and downs with my health from allergies, IBS, interstitial cystitis, depression, and hip joint problems, but I’m choosing to look on the bright side of life.
I’m choosing to be optimistic about my life, BUT I also know that it’s okay to have days where I just need to sit and cry. There is nothing wrong with having a bad day – it’s normal, and it helps to be able to cry for a while. I don’t try to hide my feelings anymore either. If people ask how I’m doing, I’ll be honest but tactful: I’m not doing so good, but it will get better. Just don’t forget to get back up and keep moving forward. Find people to talk to, even if it’s a therapist who works with people with chronic health problems. Getting stuff off your chest makes a big difference!
I’m a health and fitness blogger who is not in perfect health, and I’m not afraid to admit that sometimes life just sucks! But I keep trusting God that there’s a reason for this struggle, and a purpose for the things I’m going through. Life is still beautiful, and there are still many wonderful things to look forward to. I’m choosing to be optimistic regardless of my circumstances. It takes a lot of work on my part to stay positive, and to manage my IC and IBS, but the more I do it, the more habit it becomes and it’s not so hard after all.
One of my friends has a saying that I repeat to myself when things get hard: You can do hard things.
You have the ability to face and overcome challenges. If you’re looking at that mountain ahead of you that seems too tall, just take one step at a time and you’ll conquer it. Just don’t give up.
Read more about Interstitial Cystitis:
- Harvard Medical Center
- University of Rochester Medical Center
- Mayo Clinic
- IC Network
- Interstitial Cystitis Association
Image from ICAwareness.org
Disclaimer: this post is for informational purposes only and is not intended to replace medical advice from a qualified healthcare provider. Always use common sense and seek medical attention when needed
Food allergy mom and healthy living blogger! Sarah is also an ACSM Certified Personal Trainer, ACE Certified Health Coach, and an ACE Certified Fitness Nutrition Specialist
Rosie Beckett says
I did not know that interstitial cystitis is also known as painful bladder syndrome and that it is often misunderstood and goes undiagnosed. I am so glad that you listed the symptoms in this article because my sister has noticed frequent and painful urination over the last year. Also, she has noticed lower abdominal pain and I will make sure to recommend that she get tested to see if she has this syndrome.
Jennifer @NourishedSimply says
Thank you for sharing your story and information. I had my first patient with IC a few years ago. I had never heard of the illness despite working in hospital’s my entire career. My patient was able to educate us on her condition. Knowledge is power!
Sarah Jane says
It’s a pretty common disorder, but so many people have never heard of it! I never heard of it until my doctor told me that’s what I had. I think there are a few people out there who have this and don’t know it yet too
Kalliopi says
You are really brave girl!I didn’t even know what this is!I am sure it will help and encourage many of your followers!
Sarah Jane says
Thank Kalliopi! I really do hope that this helps people with IC, it’s tough to live with and every little bit of hope helps!
Amber says
thank you for being so open an honest, and educating us on IC. I have IBS as well, and some of the symptoms you listed….but no infection like feelings, but it is strange how so many other disorders are linked with IBS!
Sarah Jane says
It is pretty interesting all the health things that are connected. I went to a rheumatologist last year to get checked for fibromyalgia and lupus (one of my relatives has that), but my tests came back negative for both. That’s a good thing but also pretty confusing since I can get super sore sometimes when I workout, even though I have been working out for years. I definitely had to dial it back a notch with my weight lifting so I don’t hurt for days and days.
Rebecca @ Strength and Sunshine says
Wow, dear, thank you so much for opening up and sharing this all with us! I didn’t even know what IC was (until now!)
Sarah Jane says
Thanks Rebecca! I didn’t even know what it was until my doctor told me that’s what I had and I started to do more research on it. It’s one of those things that not too many people are aware of. I have a good support system who do know about it and it helps 🙂
Helen says
Wow! I’ve picked up over the years that you have health issues but didn’t realize the extent! You do amazing things and I would never know /realize all you are going through because it certainly doesn’t appear to slow you down in terms of teaching. You definitely do hard things!
Sarah Jane says
Thanks so much Helen! I try not to let stuff slow me down or keep me limited, but some days I definitely feel wiped, haha! I usually try not to let it show when I’m teaching since I set the tone for our class as the instructor: I want to keep it positive and fun regardless of how I’m feeling. It usually makes me feel better, too 🙂 I have had to take some of my workouts down a notch so I’m not quite as sore. I used to get crazy muscle soreness for days. It’s a bit better now, but I’m learning to train smarter and not necessarily harder
Ash says
Sarah,
At the beginning of thist post, you mention that you got a second opinion that you didn’t have IC.
If you don’t mind me asking, what was your new diagnosis and what did you have?
Sarah Jane says
Hi Ash, the urologist I saw told me that I didn’t have IC, but I had trigonitis, which he said was pretty common for women and just indicated inflammation. There was no other indication of damage or problems. He put me on an antibiotic in case there was a low grade infection that didn’t show up on tests, and things got better for a few months, but then my symptoms came back. Last year, I did the Mona Lisa Touch laser treatments which helped some, and this year my doctor put me on a low dose estrogen which has helped a ton. My bladder/urethral pain is almost completely gone now. I think my underlying problem in all of this was low estrogen, but it has taken so long to address and diagnose since my estrogen tests came back normal and I’m “too young” to have low estrogen (apparently not!). But I’m glad I got it double checked by a urologist with a scope and didn’t just rely no my gynecologist’s theory about IC (she is still a fantastic doctor), it helped me get on the right track to finding the true source of my problems.
Nan Nierstheimer says
I use Desert Harvest Aloe Pills and they have saved my life. Recently my flares are more frequent and last longer, I tried CBD oil no luck but changed brands to Alamo Botanicals 1.5 ml 500 strength. Wow, within 20 minutes pain gone! A direct answer to prayer! Hope it works for all of you!
Sarah Jane says
Thanks for sharing that, Nan! Glad you have found something that works for you