Well, my Interstitial Cystitis flare has gone on for over a month now. It’s actually closer to 6 weeks, but who’s counting? Oh yeah… I am! This is the longest flare that I have ever had in my life and I have been dealing with bladder pain on and off for at least 10 years. The pain is not as severe as it usually is, but there is no sign of it ending anytime soon.
I’m working with an amazing urologist whom I absolutely adore. We are in the middle of a series of 6 bladder instillations given on a weekly basis. I’ve only had two of them done so far, and let me tell you… I absolutely hate them. Aside from my extreme medical anxiety and shyness issues, they are extremely painful. The catheter hurts, the medication stings when it is placed inside of the bladder, it burns when it comes out of the bladder ( it actually makes me cry), my urethra hurts for days or a week after the procedure and I am unable to urinate for about 16 hours afterwards (which is cause for concern apparently). I dealt with all of these symptoms in silence after the first instillation, but when the same thing happened after the second one, my husband phoned the doctor’s office and told them all about it. My pain was worse after the most recent one and I was far too frustrated (and a bit embarrassed) with the whole situation to make any of these calls. This is just one of the many ways he takes care of me and I love him for it!
The nurse called us back within five minutes with advice from my doctor. She said that she wants to halt the instillations at least until we can discuss it again (which will be on Monday). She did call in a medication for the urethral pain, but it requires a prior authorization from my insurance company. My doctor already knew this, so she provided me with a box of Uribel samples. Let me tell y’all about that medication… Amazing! It knocked that pain out better than and of my narcotic pain medications did. I was floored! It does turn the urine a strange blue color, but for the pain relief I will deal with that.
Now I am sitting here, dealing with the longest flare of my life wondering what is next for me. I really hate sitting around thinking and obsessing on it, but I’m really worried here. My doctor originally said that it would take at least 3 instillations before I get any relief, but she wants to stop after only two of them. I feel like she’s giving up on my too quickly. I’ve already had a lot of doctors pass me off and quit seeing me because I am a complicated case. I’m terrified that this doctor is going to do the same to me, and of course, that is raising my anxiety.
There are only a few other options that I know for the treatment of Interstitial Cystitis and none of them sound particularly appealing. The next option, (which the other urologist already recommended) is the hydrodistention and it is done under anesthesia. The recovery from this procedure can take a couple of weeks and I really can’t afford to take that kind of time off from my responsibilities. I also recently heard that Botox injections are used to treat this disease. I already get Botox for migraines so I’m definitely not against it, but there have been some cases where the patient is unable to urinate for longer than normal periods of time. Sometimes you end up with a catheter for a week or longer! Honestly, neither of these options are something that I want to consider. I’m hoping and praying that my doctor has something different in mind, because if not – I just might give up on ever treating this disease.
Can we talk about the mental health aspects of all of this for just a minute? The depression caused by this disease is crippling some days. Other days I do okay and manage to push through the day and all of its obstacles. The stress of having a debilitatingly painful disease is a lot to deal with. When you add lack of medications to treat this disease and limited other options, the future and your own personal outlook become very bleak. I put on a fake smile and keep this to myself for the most part, but today it’s heavy on my mind.