|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.
|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.
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.
I have no affiliation or kickbacks for mentioning
any of the products in this post.
I am writing about my experiences only.
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 sends electrical 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.
I am committing to posting once a week on Fridays.