The earliest memory I have of IC symptoms was when I was about eight years old. I knew by then that I was different from other people as far as my bladder was concerned. I usually had to urinate about every 20-60 minutes. I had never met anyone like me. I also had repeated bouts of strep throat, joint pains, leg aches, rheumatic fever, and mitral valve prolapse.
I didn't experience any bladder pain until I was fifteen. I used to go into the bathroom between classes to urinate and put cold, wet paper towels against me to try and stop the burning. I would also drink some water and the pain would be gone by the time I got on the bus to go home.
During the next five years, I experienced the usual frequency, but very little burning. One morning when I was 20 I woke up and had excruciating pain when I urinated. I looked in the toilet and the water was very red. I thought that I must have an infection. I believed that a trip to the doctor and some antibiotics would clear it up. The doctor saw that there was a lot of blood in my urine, but he detected no bacteria. He told me that my bladder walls were so inflamed that they were bleeding, but that he didn't know why. He gave me some Pyridium and told me that it would probably clear up in a few days. He was right and I felt fine about a week later.
The next severe pain occurred when I was 23, 24, and 26 years old. These were all like the first one, extremely painful. They each cleared up in about a week or so and as the first episode, no infection was found. When I was 32, the next severe episode came and the pain never left. The pain was the same as before, blood in the urine, no infection, burning in the urethra that felt like a hot coal was shoved up inside, spasms, cramping, and aching. I couldn't function at all. I would be bent over in agony, spending most of my time on the toilet. I would cry for days until it subsided enough for me to get some sleep, then it would start all over again. It went on like this for a year. I actually did start getting some infections at this point, but it was very confusing because one time I would have one and the next time I didn't. I took just about every antibiotic there was. Pain pills did little to ease my pain and I threw them all up. Sex became very painful and now it now started to set off the bladder attacks.
After a year of the most horrible torture one can imagine I was finally diagnosed by a well known urologist. She assured me that I wasn't crazy and that she would help me to get better. I had a hydrodistention and biopsy in May of 1985 and it confirmed that I definitely had IC and it was a pretty nasty case, as the doctor put it. I went on the low acid diet and started DMSO treatments right away. I had one a week for 6 weeks. By the end of the six weeks I was almost pain free and continued to improve. Shortly after this, I met a family doctor who believed that my IC was caused by Candida, so I decided to be treated for that. I went on a low carb diet and began using Nystatin to kill yeast. I did this for a year and my bladder remained stable. I then added acidic foods back in my diet and by eating them in moderation I was able to enjoy a fairly normal diet, with only mild symptoms as a result. It was a trade-off. I lived with mild burning and frequency on a daily basis. I only had one severe attack during the next twelve years. I discovered that it was caused by the Sudafed that I had been taking, so I avoided it in the future. I stabilized within a couple of weeks.
During these twelve years my other health issues started to worsen. I had many episodes of tendonitis in my elbows and neck and both of my shoulders. Then the muscle pain started in my upper back and chest. Headaches were becoming more intense and almost a daily occurrence. Anxiety became a chronic and severe problem, along with depression. Constipation alternating with diarrhea had been a life long problem, with it worsening also.
Four years ago the IC came back with a bang. Just a few months before this I started getting pain and stiffness in my knees and hands, also vaginal pain. When the IC flared this time it was here to stay. the diet didn't alleviate the pain anymore and nothing gave me relief for long. DMSO did not help me at all this time and only made the pain worse. I tried the drug Elmiron, which worked great for me, but I had to give it up after suffering with stomach pain and diarrhea ever day for 7 months. This is one of the side effects of the drug. I was becoming very depressed and hopeless for my future. I was drinking baking soda and water around the clock to be able to bear the pain. I was worried about what this was doing to my body, but it was the only relief I got from the unrelenting pain and my body tolerated it better than pain pills. It also gave me much more relief than pain pills and I would have done just about anything to stop the horrible pain. I finally decided to take the drug Elavil. It controlled most of the pain as long as I didn't hold my bladder more than 30-40 minutes, and I drank lots of water. I was drinking about a gallon a day. I knew it was only masking the symptoms and would some day not work for me anymore, so I started searching the Internet for something better. I wanted to get well and be free of the IC and the pain that was now all over my body. I knew that I could not continue to live this way. First I tried Dr. Fugazzotto's antibiotic therapy. My bladder pain worsened and Fibro pain worsened and I couldn't keep the yeast under control, so I gave up on this. Next, I found Dr. Jacob, the father of DMSO. I decided to go to his clinic and start treatment after he assured me that his newer version of DMSO would not make me worse like before. I did daily bladder installations myself and oral DMSO. I had about 30% improvement in my bladder, but my Fibro and Hypoglycemia symptoms actually got a lot worse. It was very expensive, ($1000 per month) and my insurance decided not to cover it, so I gave it up after four months. What I really wanted anyway, was to find someone who understood IC and knew what to do to help me to heal, not to just suppress symptoms. I started searching again and that's when I found Matia.
I started treatment with Matia on July 14, 2001. I look forward to my life now. I am not depressed anymore. I have a sense of well being that I have never had before. My anxiety is completely gone for the first time in 10 years. The Fibromyalgia, which is severe, is much better. My overall pain level has gone down from a 10 (on a scale of 1-10) to about a 2-5. Some days I am pain free. My bladder has improved the most of all. It is pain free and I can hold my urine on average about 1 - 1/2 hours without increasing pain and frequency. The Hypoglycemia hasn't improved yet, but I know that it will. It takes time to balance everything and I believe that I will see improvement soon. I used to have hot flashes that were so severe that they would soak my clothes at least twice an hour, day and night. They went away for a couple of months and have recently returned, although not as severe as before. This just means that we need to adjust my herbs, so we are trying to find the right balance for me. I am confident that it will happen again soon. I used to have vaginal burning when I urinated and I don't have that anymore. For two years I have heard a humming noise in my left ear that goes up and down. I still hear it, but it no longer goes up and down and it is a low hum now. My husband used to have to massage my muscles all over my body daily because the pain was so bad. I hardly ever ask him to anymore because the pain is so much better. When I need a massage it's usually because we have changed my herbs and it's stirring things up a bit. I was so constipated when I met Matia that I wasn't having any bowel movements without taking something and nothing made them move very much. Once I cut the carbs out of my diet they wouldn't move at all. I had to do enemas twice a week for four months because I didn't even get any urges to go. We tried three or four different things, but nothing worked. Finally Matia found something that works for me and I have BM's everyday now.
After 6 months of treatment with Matia I was much improved with my bladder. I was doing so well that Matia said I was actually the exception in that area.....symptom free and could hold my urine for 1-1 1/2 hours with no problem, sometimes even two hours. It was the first time in my life that I had no symptoms and it was awesome because my IC was severe. I had lots of other symptoms that were still bad; chronic headaches, severe hot flashes and all over body pain that was really hard for me to deal with, but I was ever so grateful for the improvement in my bladder. I was full of hope and clung to the belief that the rest would slowly improve. At the end of January, 2002 I finally got up the courage to taper off the Elavil that I had been on for three years. It took me 10 weeks to get off of it because I am so sensitive and was suffering horrible withdrawals; anxiety, worse fibro pain, tight muscles, felt like I couldn't get a deep breath, to name a few. Through all of this, though, my bladder never wavered, not even a twinge. I couldn't believe it! Elavil had been my lifeline and now my bladder was doing well without it! This was absolutely incredible to me. But, during this time all H*** broke lose with the other symptoms. Everything was magnified many times over. (except for my bladder, which remained very stable). I continued on a downward spiral for the next 7 months. The headaches worsened to where I was waking with them virtually every night and getting only 4 hours sleep if, I was lucky. I only get these headaches during sleep, so I was starting to dread bedtime. They would leave me not only exhausted from lack of sleep, but also with increased fibro pain and depression that would last until the next headache. With them coming every night now I was getting no relief and was often crying hysterically in the middle of the night. The pain in my legs worsened to the point that they were making it hard for me to go to sleep and then they would wake me every 1 1/2 hours all night long. The hypoglycemia symptoms worsened also. Now, it didn't matter that I wasn't eating carbs, I was getting the reaction anyway and it got worse and worse; that feeling of insulin or adrenaline rushing most of the time, for hours after every meal.
Nothing was helping and I was barely clinging to the hope that I would someday be well. I started to question it for the first time and even suggested to Matia that maybe I was too far gone and too old
to heal. ( I am 50, almost 51) She kept reassuring me that it wasn't true and that I could and was healing. During this time I was withdrawing from everything. I was too ill to go anywhere most of the time, making it to church only about once a month and really not even wanting to be there. I wasn't on our board or emailing my friends much because I was so down.( I tend to withdraw when I am depressed). I didn't want to say much about how much sicker I had gotten because I was afraid of discouraging or scaring some of you, especially those of you who are new, so I didn't ask for support. I was so physically and emotionally drained that I felt like I had nothing to offer anyone, not here or anywhere.
This all started to change a few weeks ago. All along I knew that Matia had not given up on me, but while she was on vacation things kept getting worse and my hope was slipping a little every day. Finally, she was back, with new ideas for me. I started slowly going in a better direction. The headaches started becoming less severe at first and they started going away more quickly than before. They became less frequent; three or four a week instead of every night. Now, I might have only one or two bad ones in a two week period and they aren't leaving me sick all day like before. I still get 3 or 4 mild ones per week, but they go away within about 30-60 minutes and I am usually able to sleep until about 6 am before they wake me. As for the leg pain; it slowly got better and for the last three or four weeks it hasn't been waking me at night. It is also much milder in the daytime than it was. I actually had three days this past week where I had very little pain. Another thing that has improved a lot is the ringing in my ear. Many days I don't have it and when I do it is a lot milder than it was.
The carb issue is a lot better, also. For about the last two months I have been eating carbs and tolerating them well for the first time in a very long time, years. This is BIG! I had been trying them off and on ever since starting with Matia and would get sicker every time I ate any high carb food, even in very small amounts.
Even though I am still very ill and extremely fatigued, I am a lot better than I was just a few weeks ago. I am so encouraged by these improvements. Without Matia's help I would only be getting sicker and sicker. I believe that going off of the Elavil was HUGE for me. It was hard with all the withdrawal symptoms that I suffered, but I am so glad that I did it. I believe that going off of it was what worsened my headaches, which worsened the other pain and brought on the depression and hopelessness. It was a vicious cycle. Try to be brave when you are going off of a drug. Your body is used to having it and doesn't want to give it up, so it will put up a fight. Some people will get off of drugs more easily because they aren't so sensitive and others will be like me. Remember that and hang in there until you are through it. For me, I am so glad that I did it and I would do it again. I am not thirsty anymore and I can eat food without choking on it ( my throat was so dry that I couldn't swallow food, especially meat or bread without water). Sometimes the sides of
my throat would stick together when I was just swallowing my own saliva. I hated that feeling of having cotton in my mouth. My eyes were extremely dry, also, and they are normal now. I think it was
contributing to my constipation problem also. Elavil made me stutter right from the beginning and now I don't have that problem anymore.
If I can improve like this after being so ill, I believe that it is possible for others to heal. When I was going through those awful 7months I clung to the hope that it would pass, even though I was scared and starting to doubt some. I believe in the body's capability to heal when it is given what it needs, physically,
emotionally and spiritually. Last, but not least, I believe in Matia's wisdom and ability to help us. It's an incredible thing for her to take on these very difficult challenges and to deal with all of our suffering. I appreciate her willingness to help us, and her compassion has meant more to me than I can adequately express.