"Interstitial Cystitis, Interstim and Me!"

By: Jane L. Dabbs (USA)

On April 2, 2002, I was diagnosed with Interstitial Cystitis. IC is a disease of the bladder that can cause chronic and severe pain, urgency and frequency. Some symptoms of IC are painful intercourse, frequent urination, and severe pain. For me, I had all of these symptoms, on and off for years. Urine tests usually come out negative for infections. Doctors always said that there was nothing wrong with me that it was all in my head and / or I was depressed.

It started in March when I went to see my regular doctor for what I thought was a bladder infection. I had pain in my bladder. It hurt to void and had pain in my back. He tested my urine and it came back negative. He put me on antibiotics and did a culture of my urine. Two days later he called me and told me to stop the medication because the culture came back negative. He then referred me to Dr. Wolff at Burlington Urological.

I went in for my appointment with Dr. Wolff and immediately felt at ease. He first examined me and then did an X-ray to look at my kidneys. An IVP was next to see if there were any kidney stones. There were none. Next was a CT Scan with dye to see if there could be anything else causing my problems. He did put me on pain medications to help while we were trying to find out the answer. In the meantime, my husband and I saw a show on the Discovery Health Channel, featuring Terry Jo Myers, a golfer, who had IC. After watching the show, my husband and I looked at each other and said, "That was me".

I went in for the results of the CT Scan. Dr. Wolff said that he didn't see anything wrong. I started to cry. I said, IT IS NOT IN MY HEAD. I HAVE BEEN HURTING LIKE THIS FOR SO LONG! He immediately said that he knew it was not in my head and that he thought that I had IC. We did a Potassium test that day that confirmed that I had IC. What a relief to know what was wrong! I was given some literature on IC and scheduled for a cystoscopy and hydrodistention on Monday. The cystoscopy and hydrodistention confirmed that I had IC. I was immediately started on Elmiron. Elmiron can take up to six months before you feel any relief or to see if it is going to work for you. Unfortunately, my pain kept getting worse. I started going to the bathroom more and more. I was getting less and less sleep and was trying to work a 40-hour week.

In July, we always go to Vermont to visit my family. Not only do I know every bathroom in Burlington, NC, but I also know every bathroom stop from here to Vermont and back. We had to stop every 30 minutes to an hour along the way. In August, we decided to try DMSO treatments, along with the Elmiron. Dmso is installed directly into the bladder. The major drawback is that you smell of garlic, and I mean smell. It was at this time that Dr. Wolff first talked to me about the Interstim and what it could do for my urgency and frequency.

After my third DMSO treatment, I was at my wits end. I was tired all of the time. I was going to the bathroom 30 to 45 times a day and getting up 4 to 7 times a night and felt like I had to go all of the time. I was only averaging two hours a sleep per night. I could not play with my granddaughter, help with the animals or our garden and could hardly function at work. I lived on painkillers and in the bathroom. I was not living. IC was running me. I called Rick at Burlington Urological and told him that I wanted to talk to Dr. Wolff about the interstim. I stated to him, "How can my body heal or the medication or the DMSO work if I am exhausted all of the time."

Dr. Wolff explained the trial process to me. I would be awake and a local would be used. They would place the leads to my Sacral Nerves and that they would be temporary. This is done on an out patient basis.

On September 9, 2002, I went in for the trial. Paul from Medtronics was there. Dr. Wolff numbed areas on my buttocks and place the leads to my sacral nerves, one on the left side and one on the right side. With that done they taped the leads down. When I was back in my room, Paul came in and hooked up the right lead to the trial interstim device and showed me how to control the pulses. Both Paul and Dr. Wolff stated that if it did not work on this side, we would try the other side. As soon as the device was turned on, my urgency went away. I left the hospital with my husband and went to eat at IHOP and then home. I did not have to go to the bathroom until I got home. What a relief that was!

On Wednesday, I had an appointment with Dr. Wolff to see how the trial was going and to show him my voiding log. I was only going to the bathroom 9 to 11 times a day and was sleeping thru the night. I told him that on the first night, my husband was scared when he woke up in the morning, because I had slept all night and did not wake him up by getting up all night long. My husband thought something was wrong with me.

My surgery for the permanent implant was scheduled for September 23, 2002. I was so excited. After the surgery, I was sore from the incision on my hip where the pocket for the implant is and just a little sore from the incision where the leads are. Surgery was a breeze and there is a two-week recovery period.

On October 7, (my new birthday), my implant was turned on and programmed by Paul of Medtronics. I immediately felt relief. I can now play with my grandchildren (I have 2 now), help in the garden, feed the animals and go on trips. I do not live in the bathroom anymore. The interstim is not for pain, but it does help with mine. I literally have no pain unless I do not follow the IC diet. My husband told me on my anniversary on October 14, that he did not need a present because he had his wife back. The interstim is not a cure as there is no cure for IC, but it is my miracle.

I do not know what will happen with my IC, and me but whatever is in store, I will be better able to handle it because of the interstim. With the interstim, I do not live in the bathroom and I am able to sleep. I am not exhausted all of the time. The interstim gave me my life back at a time when I thought that life was not worth living.

Thank you, Dr. Wolf, the staff at Burlington Urological, Paul at Medtronics for all that you have done for me.

Special thanks, to my husband, Michael, for all of his understanding, patience and love while we deal with this dreadful disease.

Jane Dabbs

Revised: 3/01/05 - kj