Chronic bladder pain, or interstitial cystitis, is a complicated disease to diagnose. I’ve been doing quite a bit of research on it as my urologist and primary care physician believe that I have this terrible condition. My road to diagnosis of interstitial cystitis has already been extremely long and I feel like I’m no closer to an answer than I was at the beginning of these symptoms.
Back in 2012 I became bothered by bladder pain, urgency, fullness, frequent urination and pain during intercourse. I went to a gynecologist and five different surgical procedures were performed on me in one sitting. I had a hysteroscopy, laparoscopy, D&C, the LEEP procedure and an endometrial ablation. The idea was that one or more of these procedures would stop my pain. My doctor at the time planned to look into my bladder and see what was going on there, but for some reason he chose not to do so. I went back for a 6-week follow-up and the doctor was quite surprised to hear that I was still experiencing the same pain. Upon further examination, the doctor stated that it really might be interstitial cystitis. After that I found that doctor to be incompetent and never went back to him. I also never sought further testing nor treatment for my chronic bladder pain.
During the last ten years I have struggled in silence with this excruciating bladder pain and humiliating symptoms. I finally went to a doctor for these symptoms last summer. My primary care physician immediately thought that my symptoms sounded like interstitial cystitis, so she referred me to urology. After waiting nearly 6 months, I finally saw a urologist. I am now scheduled for a cystoscopy to hopefully get a diagnosis or at least some kind of relief of these symptoms. I suffered for so long without speaking to a doctor that I really did myself a disservice. I waited almost a decade and had no idea that there were medications that can help this disease. There are even some over the counter remedies and I had no clue!
This disease comes with a slew of embarrassing symptoms and almost all of the tests and procedures for it are quite intimate and mildly humiliating. I am a very shy woman and prefer to keep my lady parts to myself, but with this disease that is just not possible and that is the part that I hate the most. It’s embarrassing to always be running back and forth to the bathroom like a child who has very little bladder control. We have to think about restrooms everywhere we go and during Covid, a lot of places have closed their bathrooms to the public. This has made it extremely difficult for people with this disease to go outside of our homes. We can’t do shopping, running errands or appointments without constant access to a restroom.
Interstitial cystitis is an autoimmune related disease, which means that it commonly occurs in conjunction with autoimmune diseases. Since I already have two of those, it’s very likely that I have this disease. It’s depressing. It’s saddening. It’s enraging. This is just one more condition that is going to flare and cause pain on and off for the rest of my life. There is very little that they can do as far as treatments are concerned. There was only one FDA approved medication, Elmiron, but recently a lawsuit has been brought against the makers of that particular drug. Other than that you can have bladder instillations done and there are a few supplements that can help. The newest craze is sending patients to physical therapy for pelvic pain. I am going to physical therapy currently, but so far no such luck on relief of symptoms.
Looking at life from the perspective of the chronically ill patient can feel defeating most of the time. I have very few good days lately. Everything is flaring out of control and I am going insane with the constant pain that I am in. It has forced me into another depression and that is more upsetting to me than my actual diseases. I’m tired of always being down in the dumps mentally and emotionally. I can’t catch a break and am really struggling to find a reason to keep on fighting for my life. If you are a person who prays, please keep me in yours.
Stay strong fellow autoimmune warriors and friends and family. Love and light now and always.