Ur In Trouble: Interstitial Cystitis and Fibromyalgia

It’s not fun to acknowledge
when you are having “urine problems”.
I find it to be one of the most silent and
life inhibiting issues I face with FMS.

November is Bladder Health Awareness Month

Update: I’ve been recently diagnosed with a rare disease that they think is actually underdiagnosed-Fibromuscular Dysplasia (FMD). I have it in my carotid arteries and am having tests soon to see if it’s anywhere else. FMD causes arteries to harden or become brittle. This can lead to aneurysms or tearing. One of the areas can be in the kidneys. Because of an abrupt increase in my blood pressure increase, I’m getting an ultrasound to see if I have renal FMD. I’m not yet sure if FMD in the renal arteries would contribute to issues in the bladder.

There are many, many co-occurring issues that can come with Fibromyalgia (FMS). Interstitial Cystitis (IC) is one of them that isn’t mentioned much in the FMS community. I was diagnosed with IC about 15 years ago, when I was 40. However, I believe I’ve had some level of IC for most of my life.

In the article Fibromyalgia and Related Conditions written by Dr. Daniel Clauw of UofM for the Symposium on Pain Medicine in 2015, he states,”Nearly all individuals eventually diagnosed with FM have several bouts of chronic pain in other regions of the body earlier in their life.” Among the long list of comorbid issues interstitial cystitis/painful bladder syndrome. He explains,”This disorder often begins in childhood or adolescence, and individuals who eventually go on to develop FM…”

I don’t have all of these symptoms
and compared to some, my issues are moderate.
However, its impact on my daily life
and self-perception has been damaging.

IC Progression

As a child, I hated taking time out from life to use the bathroom. I prided myself on how long I could go without peeing. To do that, I didn’t drink much. Back then, there wasn’t talk about drinking water and certainly wasn’t a concern in my family. However, this penchant for not going to the bathroom, during my elementary years, combined with my people-pleasing ways would sometimes lead me to have accidents on my way home from school because I hadn’t wanted to miss anything that was going on in class.

As a teen and a female, I was acutely aware of my weight and body image. I always felt overweight and was conscious of what I put in my mouth. Back then I remember thinking and even saying that, “I rather eat my calories than drink them.” While this isn’t all that bad in theory, it didn’t mean I was drinking water. To me, water made me gag (I was that unused to drinking it). So, what it meant was that I didn’t really drink much at all. What I did do, though, was to eat a lot of fruit, mostly canned back then.

Then, I began my teaching life. My doctor at the time said that it was very common that teachers had urinary tract infections and bladder infections because they were infamous for not drinking water and not being able to go to the restroom as needed. At this time in my life, I went from UTI to antibiotics, to yeast infection, to UTI sometimes leading into a bladder infection, to antibiotics, to yeast infection,…over and over and over. There was a time when I found myself going to the doctor every couple of months. One odd thing, though, was often, the “infections” were found out to be false when the urine test was finally completed a few days after I had already started the antibiotics. At that point, the doctor would always tell me to finish them “just in case” which I dutifully did.

It wasn’t until I started having severe urgency and frequency (at this point I had finally learned that drinking water was important and had come to enjoy it) that led to a few embarrassing accidents at school that I went into an OBGYN doctor who also specialized in Interstitial Cystitis. At the age of 40, I was diagnosed with IC, after umpteen misdiagnosed infections.

As far back as I can remember, I had an aching in the area below my belly button. What made it feel better (and still does to a degree) is pressure and warmth. To my husband’s chagrin, I was the clingiest spooner at night (when I most noticed the aching). His cute booty provided the exact pressure and warmth to calm the ache and let me sleep. I didn’t know that ache was due to a problem with my bladder.

Been There. Done That

I’ve done all(multiple times) but the last line
of treatment, and I am
determined NOT to go there!

I was thrilled to get a diagnosis and find out that I was not having constant infections. I first was put on Elmiron for two years. This seemed to help with the pain at first; however, by the end of the two years, once I was off of it, I didn’t notice any difference. I was just used to the continuous dull ache in my bladder all the time. (I liken this pain to the ache women get when menstruating with bad flares feeling like my bladder was on fire.) Also, I was introduced to Prelief which is an OTC dietary supplement that removes acid from trigger foods. This does seem to help with pain to a degree. My urologist also suggested I take aloe vera. I’ve used Desert Harvest Super-Strength Aloe Vera Capsules, and these seemed to help some as well.

In addition to medication, I adjusted my diet as much as I could. I eliminated coffee (mostly due to the acid). There are some chicory and low acid coffees, but I have not found any locally. I have always been a semi bland eater due to acid reflux, so I have mostly stayed away from acidic fruits. However, with me being lactose intolerant (I could eat a piece of cheese and be cleared out for a colonoscopy), giving up all things tomatoes is nearly impossible. And I also refused to give up wine. These non-concessions are when I use Prelief.

You’ll note that most of the “good stuff”
is on the avoid list.

Besides, the pain, the frequency (especially in the morning) and urgency (which comes up strongly and seemingly out-of-the-blue) was the most embarrassing and difficult issue I had to contend with, especially at work. As a teacher, even when we are all having a break, students would invariably want to talk to me individually during this time. Some would even follow me to the bathroom, and I’d have to finally say, “Excuse me” and hedge my head towards the staff bathroom’s door, for them to realize I had to use the loo.

I have used four types of prescription medication to alleviate frequency: Enablex, Tofranil, Myrbetriq, and Vesicare. These caused symptoms that were not fun: constipation, fatigue, dry mouth, dizziness, headaches, nausea just to name a few. And in the end, they didn’t really seem to make a huge difference which I only found out after I got the courage to stop taking them.

For pain and the frequency/urgency issue, I have gone to four different pelvic-floor physical therapists. For someone who had planned what she would wear for her first delivery (for the 2nd, I knew better) and was too inhibited to get a massage from a stranger, this was really a step of desperation and a major lesson on not giving a damn. During my third stint of physical therapy, my urologist suggested botox injections at the trigger points in my bladder. This was an outpatient procedure that did involve me going under anesthesia. Sadly, I had no change in my symptoms.

My last PT suspected I had a labrum tear in my left hip; she said that she had been finding a connection between IC and hip-labrum tears. She, then, referred me to a specialist who after an MRI verified that this was the case, so I had the surgery.

Insterstim is a device that send selectorial stimulation to the sacral nerve, which is thought to normalize neural communication between the bladder and brain and between the bowel and brain.

Being, in the end, these did not make much of a difference in my IC symptoms, I went to see another urologist who suggested it was time to implant an Interstim which a device the size of a quarter. This surgery was outpatient with local anesthesia only. I have a one-inch scar near the top of my left glute and a smaller incision at the sacrum. This healed up easily and being I did it during spring break, I didn’t have to have any time off from work. There is a remote control that can change the level of stimulation delivered as well as change the program which determines the direction of the electrical pulse. I tell people, “It’s like a pacemaker for my bladder.”

This implant seemed to really help for a bit over a year (I had it two years ago). However, I began to have site pain in my left glute and was having ongoing sharp pain in my left psoas which became convinced was coming from the electrical stimulation and my crazy Fibro-amplified nervous system. I chose to turn it to zero for about three months. During those months, with chiropractor adjustments, medical massage, and yoga, the sharp pain went away. I was set on getting it removed.

However, after seeing my urologist, and hearing what the removal would be like (not as easy as the implant surgery), we came up with a retry. She reprogrammed the device and set me up with new physical therapy which I have just started.

Getting tired of having to
know the whereabouts of every
bathroom wherever I am.

And so, I am working on retraining my bladder which in the end is just like retraining my brain with an addition of a few exercises. My goal is to be able to comfortably go on upcoming hiking trips (in which restrooms are not readily available and dropping into a squat in the woods isn’t fun to do every hour.)

Helpful IC Resources:

If you are suspecting IC or are contending with IC issues, I’d love to hear from you. I have gone through nearly every treatment; I sure hope I don’t ever have to get to the bladder surgery step.

teal line drawn waterlily with teal lettering of the title and motto

19 thoughts on “Ur In Trouble: Interstitial Cystitis and Fibromyalgia

  • March 21, 2020 at 11:15 pm

    This was very interesting. I am sorry you are suffering so. I have always got frequency of urination but put it down to diabetes and fibro. Maybe it's IC. I will look into it. Thanks for sharing.

    • October 5, 2020 at 5:31 am

      I have both Fibromyalgia and I got IC two years later after that so I understand what you are going through. I also have a Medtronic device that right now I’m having to do some playing around with my settings after 2 years trying to find a alternative setting that works for me. I find myself going for frequently and that’s not fun. This has been a God send considering I was going for bladder instillations once to two times every week for almost 2 years driving 60 miles round trip. Did the pelvic floor treatments but didn’t have tons of success and would have to go forever basically 2 x week. These auto immune diseases are just a on going battle as I am sitting her writing this after being up 3 times last night and finally just took some meds for the Fibromyalgia. God Bless you young lady and prayers to you!

  • March 22, 2020 at 2:54 pm

    I was surprised to find the connection between IC and FMS. Not sure why because it seems like much of my other issues is connected.

    • October 14, 2021 at 7:09 pm

      I was diagnosed with IC on 8/29/21. Been in a flare for almost a month now. Nothing is working. My Urologist has me on Myrbetriq, Oxybutynin, and Hydroxzine. What makes it 100% worse is the month before this diagnosis I was diagnosed with Vulvar Lichen Sclerosus which is also a incurable autoimmune disease. Between the constant pain from both of these conditions I’m about to lose my mind. Frequentcy is so bad. Went to bed at 11pm last night. By 2 am I had pee’d 5 times!!!Its a vicious cycle because all the wiping gets my LS going. ?

  • March 25, 2020 at 12:20 am

    I was misdiagnosed with IC because of my fibromyalgia diagnosis. My UITs were caused by my pain medication and frequent urination was the result of having my bladder pulled and attached to my sidewall by endometriosis adhesions. Thankfully, I fought my diagnosis and the real culprits were finally found. I always suggest getting a second opinion to be safe.

  • March 25, 2020 at 1:45 am

    Yes, for sure. Glad you pushed to find the correct diagnosis. For me,the IC came 15 years before my FMS diagnosis. Wasn't until I began to research IC and FMS, that I found that they are often connected.

  • March 26, 2020 at 9:02 pm

    Very interesting! I only recently learned about this condition, and this is a very informational post.

  • March 26, 2020 at 9:22 pm

    I'm glad you found it informative. This is a condition that doesn't seem to be talked about a lot.

  • July 17, 2020 at 6:43 pm

    I swear, IC is the absolute worst. It took me years to find out that's what I had. Mine flares up when I'm under a lot of stress (aka a pandemic) and there's nothing I can do except try to be less stressed.

  • July 19, 2020 at 12:31 pm

    I started writing a blog post on this yesterday. My painful bladder syndrome diagnosis is very new so I learnt so much from this post of yours. Thank you for sharing this.

  • July 19, 2020 at 12:39 pm

    Yes, stress is a huge contributor to all my IC symptoms. Breathing, yoga, meditation helps. But as a young mom and full time teacher, when first diagnosed, this wasn't something i knew about and I doubt i would have taken the tome for myself if i had. So many demands. I've done all these changes after being forced to go on long-term leave and retire. I sure hope that you can somehow incorporate self care. I feel for you.

  • July 19, 2020 at 12:41 pm

    I'm so glad this has veen helped you, Shruti. If you have any questions, just contact me. However, all you are doing with meditation and breathing will help.

  • July 23, 2020 at 1:50 pm

    Whilst I don't have these conditions, I do get bladder and vulva irritations from the dryness of Sjögren's syndrome, and sometimes I do think they're worse than pain itself. I spend all night pacing up and down just hoping for some relief, but nothing helps. Thanks for sharing your knowledge and experience so it helps others out there.

  • November 6, 2020 at 4:44 am

    Very informative. It makes me quetion some things I’ve been going thru. Have a great weekend. I got used to wearing pads for years but lately have not had to. I hated flying!

  • October 6, 2021 at 5:46 pm

    I think this is what I have. No one has mentioned the worst of the problem for me painful sex. I too have Fibromyalgia and I about sick of diagnosis that have no real cure or fix and are exacerbated by stress. Well the illness itself is stressful coupled with no real cure. Just feeling really frustrated.

    • October 12, 2021 at 1:34 pm

      Yes, painful sex when my bladder is hurting is not good. I have found that MBSR and other ways to calm my fight/flight and over-ampted nervous system to be the most helpful for managing the pain.

      While FM is chronic, I do truly believe (because I’ve seen many who are living FULLY despite it). I definitely am moving in that direction, especially since my worst time of symptoms 4 years ago. This summer, I was able to hike 40 miles on Pictured Rocks over 5 days (a thing I thought I’d never do again). I suggest reading some more posts to hopefully give you hope for your own future: I Did It My Way! One Year of Low Dose Naltrexone for Fibromyalgia, EMDR Therapy: Rewiring the Fibro Brain, and The Frozen Fascia of Fibromyalgia: Myofascial Release. It’s not been easy; I’ve made it my full-time job (and I have the luxury that I am retired). My post about that: Managing Chronic Pain is a FULL-Time Job.

      Gentle hugs.

      • February 20, 2022 at 7:01 pm

        Thank you for your blog.
        I’ve been struggling with IC for years. It’s been terrible for the past few months. I can barely function. Truthfully I’m not functioning.
        I am taking AZO and Urelle round the clock. I take freeze dried aloe.. just today I saw that there’s a crisis dose, so I’m taking 6 pills every 4 hours.
        I take Prelief. I drink water constantly. I am about to start PT next week.
        Good luck everyone on their journeys. I hope we alll feel better.

      • February 22, 2022 at 10:16 am

        I’m sorry it’s ramped up for you recently. Are you under any more stress or emotional issues lately? Also, have you tried the bladder instillations? They work for some (not me, though).

Thanks for taking time to comment. We learn together how to live more FULLY through our interactions:)

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