Urgent PC/PTNS Update

After finishing the series of bladder instillations without much improvement, I decided to try the Urgent PC to help with the overactive bladder part of IC. I was fortunate to get approval from my insurance company for this treatment since it is relatively new. A needle electrode is inserted into the posterior tibial nerve located a few inches above the medial malleolus (the bony point on the inside of your ankle). The electrode is then hooked up to a small box that provides an electrical current into the nerve for 30 minutes at a time. While the posterior tibial nerve is located near the ankle, it originates from the lumbar-sacral nerves (L4-S3) which control the bladder detrusor and pelvic floor. Treatments are given once a week for 12 weeks, then tapered to every other week for 6 weeks, then once a month and eventually, one every couple of months. According to the Urgent PC website, most patients begin to feel some sort of relief around week 6 with the most common improvement being made in nighttime urinary frequency. The treatments are not painful. In fact, I would often bring a magazine to read during my treatment session. FINALLY, I have a bit of good news!!! I have finished the weekly series of 1 a week for 12 weeks and am now tapering down to 1 treatment every other week. Around week 4, I noticed that my nighttime frequency was decreasing to around 2 times each night. After my eleventh treatment, a typical night for me consisted of getting up 1-2 times. It's a drastic decrease from my previous history of getting up 4, 5, 6, 7 or more times each night. Although the Urgent PC has not done much to improve my daytime schedule, I am still pleased with the results. I am overall in a better mood because of my ability to sleep. However, I have noticed that the Urgent PC does not provide me with pain relief. If my bladder becomes more irritated, then I may still be up several times a night, so I really try hard to stick to my diet and eat the foods I know I can tolerate. This treatment is definitely worth trying, provided you can get it reimbursed from your insurance company. I went the route of having it pre-approved before having the procedure, since the cost of the treatments is rather expensive and considered "experimental" by many insurance companies. I hope this procedure can be more easily available to patients. For me, it's been a blessing.

Bladder instillations, Roller Coaster Rides and Bleep Blips

I know I've taken a LONG time to update this...mainly because not much has changed. I recently finished a series of 12 bladder instillations. Sadly, I received little to no significant benefits from them. Some people do really well with the instillations. I only received very short term relief, one to two days. Then, all the symptoms would return again. It is a bit discouraging. I just keep praying (and PRAYING and PRAYING and PRAYING) that there would be something that would help me.

My husband and I were recently watching a show about the physiological effects of thrill rides such as roller coasters. Thinking I might like to take up the pastime of thrill-rider enthusiast, I decided to brave the crowds, long lines and theme-park prepared foods with my husband and go to Six Flags Great America last week. I know, not really the best choice of activities for people with IC. In fact, this type of activity can be impossible for many people. I prepared myself for the adventure by telling myself I was going to take my time and use the bathroom before extremely long line. I knew where all the restrooms were located and comforted myself by knowing I could go directly to it when I got off the ride. I also had a bladder instillation the day before which help to slightly decrease my frequency. I was set and ready to go!

We started off the day with a warm-up rollercoaster, a "family" rollercoaster as it is described. No problem there. My bladder felt fine. My stomach felt fine. Off to ride number two...The Orbit. The description for this ride said, "Come get your world turned upside-down on The Orbit, a flat, spinning ride that rises up just to flip you over." Sounds intriguing, doesn't it? My 6 foot four inch husband and I were crammed into a small cage-like device, he in the back, and me, with my knees bent nearly to my neck, in the front. "Can't you move your hips in a little more? I can't fit my legs in this thing." He asked. Wiggling and wiggling around until we were almost stuck, we somehow managed to jam both of ourselves into this square box of a ride. The ride began to spin...and Spin...and SPIN...endlessly until I began to feel both bored and very sick! I couldn't get off this dumb ride fast enough. Weak-kneed and dizzy, I manage to dislodge myself from the ride saying, "I think I am gonna throw up! I think I gonna throw up!" Searching frantically for a chair in some form, I took a seat on the curb. For the next hour and half, I proceeded to be both dizzy and nauseous every time I moved or turned my head. At one point, I willing stumbled my way to the first aid station and asked if they had a cot I could rest on for a while. My husband later told me my eyes were dilated. Sadly, we decided we were going to have to leave the park, not because of my bladder, but because of the stupid spinning ride that caused some strange episode of vertigo.

One our way out the park my husband said, "I want to get a funnel cake before we go. I feel like if I at least get a funnel cake, our trip won't be a total waste." Unable to eat the funnel cake myself, I wondered into a candy shop to see if there might be something to make my theme park experience worth it. I spotted my favorite candies, Bleep Blips (a cross between Smartees, Sweattarts and shaped like a flying saucer ) and in small quantities I can actually eat them. Not wanting to irritate my bladder, I decided I would purchase just two Bleep Blips. My husband suggested that I get a big scoop of the candies as he would share them with me. Vowing to myself that I would only eat two, I bought a bag full.

I walked out of the store and popped the first Bleep Blip into my mouth as we headed toward the exit. Within minutes of savoring my favorite candy, my head began to clear, my dizziness subsided and my nausea vanished. These were miracle Bleep Blips! Suddenly, I was feeling...FINE I was feeling so good in fact, that we were able to ride some of the big rollercoasters and remain at the park until closing time. Anytime I was feeling sick to my stomach, I just popped a Bleep Blip and away we went (I actually ate about 10 of them). We now have plans to go back later in the summer to ride the rest of the rollercoasters that I missed, and of course, armed with a pocket full of Bleep Blips to tame my ails.

Bladder instillations continued

I haven't posted for awhile because not much has changed. I am still having weekly bladder instillations. I have had 8 in total now. Honestly, I am not really noticing much of a difference. Some days I feel like things are getting a little bit better and some days I really can't tell. My doctor told me it could take several weeks to have any benefits if I am not taking Elmiron along with the instillations. Although I dread being catheterized, I will continue for several more weeks with the hopes of achieving some positive results from all of this. The nurse at my doctor's office told me it seems as though I have a pretty severe case of IC since it doesn't really seem to be responding to the instillations. I try not to really get caught up in the severity of it though. I can still work and do some normal activities so I am thankful. It is what it is and I just try to take one day at a time and anticipate that things will improve. Today, my husband and I are headed off to a Chicago Cubs game, so that should be fun. I do get a little bit nervous but I usually have to go to the bathroom several times...should still be fun though. I need to have a little fun now and then.

Interstitial Cystitis and Relaxation

I have recently been realizing that I need to focus on some relaxation techniques to retrain my pelvic floor. I am constantly holding my muscles in a state of tension and I believe this is one of the primary factors involved in causing my bladder to spasm. This is a common problem among IC sufferes. I've known this information for a long time, I just didn't "get it" until now. I realize that increased tension can result in decreased blood flow and nerve conduction to the affected area. I believe that if I can learn to decrease tension, I may be able to improve my body's ability to begin to heal. Let me tell you, learning to "relax" is NOT easy. The feeling is so foreign to my body. The minute I let the pelvic floor relax, I want to tense it again. Tension feels normal, and relaxation feels oh so abnormal. With practice, I believe I can begin to make relaxation feel normal.

I am still doing the bladder instillations. I went to the doctor last week and he recommended that because I am not really feeling any relief, I should continue for another 6 weeks. Lucky me. There are an infinite number of things I would rather be doing than being cathaterized on a weekly basis. I decided I needed to take a week off this week. Next week will begin my second series of six more instillations. Hopefully soon I will begin to feel some changes.

My IC Story

I am a little bit behind in my posting but New Dawn Pilates received a rave review from Molly Miller PT (consulting physical therapist for the Interstitial Cystitis Association). It's wonderful to have her support for this first project! If you want to see it, check out her website at:

www.roadtoslainte.blogspot.com


Tom and I are overjoyed to have such a positive review of the DVD.

New Dawn Pilates website is up and running!!!

The New Dawn Pilates website is FINALLY up and running!! Tom and I are very excited about this. The website will provide a forum for people struggling with pelvic pain disorders and exercise as well as allow people to purchase the DVD from us. The content is not 100% complete yet. We will be adding additional info on pelvic pain disorders, but this does not in any way affect the ability to use the website. Again, we are super happy that the official website is finished!

Bladder instillations and the Discovery of Tribulus

Since I wrote the last post, I have had three more bladder instillations...yes with the catheters. After my third one, I started experiencing increased bladder pain. I called a friend who has had IC for a number of years and asked her about the increased pain. She told me that when she first started getting bladder instillations several years ago, she would have to go home and sit on an ice bag because it bothered her so much. She told me that the increased symptoms should subside in a day or so. Relieved, I just waited out the symptoms and sure enough, by the next day things had calmed down. All in all though, I have not really had any remarkable breakthrough in my symptoms yet with the bladder instillations. According to some research I found on the internet, I may have another 6 weeks or so before I am really able to tell if anything changed. I am praying something improves! I did however find an AMAZING supplement that has helped me when I feel like I have a UTI. It is called tribulus and the company who makes it is called Standard Process. Originally, tribulus was marketed for impotence...probably not going to help ME much. However, recent research suggests that tribulus has little or no effect on impotence. Tribulus did prove to have an effect on bacteria of the urinary tract. In fact, it inhibited the growth of ALL infective bacteria of the urinary tract that were tested. I was nervous about trying this supplement because so many things (food, medication, supplements etc,) irritate my bladder. After a few days of taking this supplement, any symptoms of an infection I might have had went away! I couldn't be happier about the possibility of finding something that will take care of an infection without the use of antibiotics! I don't know if this product will be well tolerated by all IC patient's, but it certainly has been by me. Thank God! By the way, Thanks friends, family and strangers that check up on me.