My battle with IC began on New Year's Eve of 2000. What a great way to start the millennium! For the first time in my life I got a urinary tract infection. After about 2 months and 8 rounds of antibiotics I was not getting better and I was in serious trouble. I learned about IC and wanted to get a diagnosis because I thought it would quiet the uncertainty that was plaguing me, so I had a cystoscopy/hydrodistention done. After the procedure the urologist said he did not think I had IC but that there was some inflammation on the lower part of the bladder. Of his own volition, he had decided to cauterize (burn off) that area in the hopes that new tissue would grow. I was in much more pain after that procedure than before, and had really not been given any useful information. Although I was never technically diagnosed with IC, I had an inflamed bladder that was very painful so as far as I was concerned something serious was wrong.
Since then I have been blessed to have found Matia over the Internet and began seeing her. I started seeing her in June 2000 and have since stayed with her. My journey has been a long and tough road but I am very glad to say I am well on my way to being feeling like my old self. Initially, large amounts of bacteria and yeast were found in my stool so that was our first concern. I slowly began to improve on the herbs she gave me. During this process there were many set backs and many bad days. Once your body is out of balance due to illness it takes a long time to get it back in balance. The yeast alone took me over a year to get rid of and I am still dealing with some of the residual symptoms. I also had other symptoms than bladder symptoms. My stomach felt so bloated all the time it looked like I was pregnant. I remember that in the beginning, even drinking a glass of water would make my stomach balloon. Also, about 6 months into my treatment I began having vaginal problems. I would have constant swelling and sometimes tingling, sensitivity and itching. These symptoms have proven to be the hardest and most frustrating to get rid of, but I know in time that these too shall subside. As of today I feel that my bladder is greatly improved and I don't have that generalized sick all over feeling anymore. My stomach is flat again and I have started adding back in more foods that I can tolerate. As I work on ridding myself of the vaginal problems, I have good weeks and bad weeks but seem to be having more good days than bad as time goes by. For some reason I usually feel really good during my period, then not too great the first week after, and then slowly start feeling better and better as I get later in my cycle. Matia thinks that this is due to the fact that the later along I am in my cycle, the more tissue and "nutrients" are present in this area which is what I need.
I truly feel that there is hope for everyone out there with this disease to improve. It takes a lot of time and patience but is worth every amount of effort because the result is getting your life back. While I am by no means an expert on illness or IC, what follows are some things I have learned that have been helpful in my journey. While IC is a very individual disease and what works for one might not work for another, there are still many similarities among each of us so maybe these items will be helpful for you.
I tried to do as few invasive procedures as possible. As mentioned before I had a cystoscopy/hydrodistention done early on and it made things much, much worse. I do feel it is important to take tests to get diagnoses but after this first horror show I tried to do only the tests that seemed necessary and gave me valuable information.
I looked into different avenues. I tried mainstream and alternative therapies. While I have been seeing Matia I have still continued to research other therapies and continued to see conventional doctors. In fact, a big break came when I told Matia that my gynocologist mentioned that I had extremely thin and brittle vaginal tissue, which has helped us figure out what is going on with me. By getting second opinions and different views I stumbled across valuable answers. And this being said, I made sure to find healthcare professionals that are open to different things and willing to listen to my ideas. I feel this creates a partnership where you both bring things to the table and work together to get better. Furthermore, I made sure to take my doctor's recommendations as just that. I made sure to be well informed about my options and realized that in the end I know what is best for me. I only do things that I think will be helpful. Listen to your body. We all have an innate sense about ourselves and what is going on in our bodies. Trust your inner instincts. More often times than not, they will be right.
I kept a log of my progress. This was very important for me to figure out what was going on with my symptoms, especially as they related to my menstrual cycle. With IC patients, almost anything could be irritating you so being as detailed as possible is a great way to figure out what's going on.