Which Treatment Is for Me?

Good afternoon readers, Today I’m addressing the topic” What treatments are right for me?”So are you asking yourselves this question? You might be just starting out on this journey and are swamped with input from all you read, your doctors and your IC family, or are you at a crossroads trying to figure out what the next best step will be. You noticed I didn’t say which treatment is best, because there are NO best treatments, what works for one might or might not work for another. So that’s why I chose to title this entry which treatments are for me?

     Wherever you at on this road, you’re feeling desperate for answers. I want to share with you my journey of treatments I’ve taken so far. And then briefly discuss how to go about deciding that vital answer to that question, which treatment will work for you?

     My journey with treatments began with some injections into my lower back and internal pt. the injections did not work. I was referred to a physical therapist that specializes in PFD or pelvic floor disorder and an uro.I had never heard of PFD, never mind understand what it meant. I was referred to a wonderful pt, she specialized in it and knew her stuff. This treatment was very painful treatment,. I grew to love my pt, she truly cared about every patient that walked through her doors.

     Since my Interstitial cystitis went misdiagnosed for so long, adjusting to this treatment was grueling and tiresome. It became frustrating at times, she was teaching me how to relax those muscles, I never thought learning to relax muscles would be so difficult. Since IC and PFD go hand in hand quite often, this was also supposed to maybe help with the IC pain too. She had a way of explaining things to me in such a way I could understand.

      She said imagine your muscles are atrophied.its like any other muscle if you haven’t used it in awhile you have to relearn how to use it. like many others out there I had to become aware of these muscles and learn what it felt like to relax, because how can you relax something if you don’t know how that feels. My progress was so slow…..finally my team of doctors started talking and looking in to the next step of action.

    The decided on internal injections which would be shots id get down there, which would numb those muscles, so when id go for pt, my therapist could work those muscles  and press harder and I wouldn’t feel it until later. It was very tough, every week id get between 10 -13 shots internally, my Uro who did these was concerned that since my ic went undetected for so long there was irreversible damage. It was starting to be discussed that my uro wanted to look into internal Botox, I also did instill which did not work only flared me so bad.

   By this time my insurance refused to let me continue to see my uro, and would not pay for my medical transportation anymore, so I prayed that I could find one closer to where I lived , since I don’t drive. When I did find my new uro, I only saw him a few times because he was very cruel and terrible bedside manner, but before is toped him he informed me that I had internal scarring from my the internal injections, so internal Botox was out of the question.

     I tried another uro, he didn’t feel like he could help, now the one im seeing is very good. He has talked to me briefly about the interstim, but even though I have urgency and frequency, my pain is the worst symptom, and with my scarring issues, don’t want to have that surgery and have complications form more scarring. I do have my Hydrotensions /cystoscopy I had my first when I was first diagnosed in 2010, I was fortunate to get a little relief, so then I had a another one, end of last year and ill be getting ready to have another one, this is where they stretch your bladder out, the last one last year I got about 2 and half months of relief. This procedure is not actually a treatments per say,, but some patients get relief, some patients have this procedure every 4 or 6 months. Like with any treatments, approach it with caution, like with any treatment there can be risks.

      My last one was a tough recovery because I had the hyrdo,cystoscopy, and biopsy and scraping, they usually just do the hyrdo and cysto. I got 2 months relief, but because they had to do the other things, it was a painful recovery, the way I look at it, 2 months of relief is better than nothing each time I have it. If I was to find that this procedure was not helping anymore, I would stop it.

       So when you ask me which treatment is best? I will say to YOU: Its what treatment is right for you? Remember what works for you may or may not work for the next person, we are all individuals, and  we all react differently. So here is how to go about handling all you hear and to answer that question, its important for you to research, be your won advocate, that’s vitally important. Talk to your IC family and get their input and ideas, but don’t take their course of action as the sure go ahead sign for you to do the same treatment.

    Who knows your body best? Your doctors, Your IC family, No  YOU  DO!!!!dont let anyone convince you you to do something your not comfortable with or haven’t researched enough. The more you know about your body and your pain, and what each treatments is and how it works, the better off you will be in making wise choices about your health know it can feel overwhelming, but you have those IC sisters or brothers who have been down that road of treatments and can give you a lot of vital information. I’ve got a lot of great input from my IC family; they have shown me different perspectives at times and helped me see things more clearly. But you are the one who should make the final decision on what’s best for you. Don’t be one of those people who go into something blindly and it makes your IC worse.

    We are all learning together. None of us have all the answers. We’re all doing the best we can with the options were given. So think, be educated and make up your own mind? You deserve the best life possible. I love you all readers, may God hold you each close as you learn to live with IC~