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Rachelle: Interstitial Cystitis

Pain will take your life.

Apricot Rose for Rachelle by Sherrill Knaggs, ISN Artist I was a normal healthy teenage girl and at sixteen, had no real problem with my health. I had been regularly going to the gynecologist and they were watching my ovaries for endometriosis because it had been a problem in the family. I had no problems with this though.

I was having bad periods and a lot of pain with the periods. I did not have any real problems but the doctors suggested that I take the birth control shot called depo provera. After two shots I started to get sick. I went ahead and took the third shot. After the third shot I got very sick and started having a lot of pain in my left side. I went to the emergency room and they told me that it sounded like a kidney stone and did an X ray where they found four stones. So I had an answer but it did not make the pain go away. I was sent home home to drink a lot of water and rest in bed. I ended up back in the hospital the next night. This time they said that they would give me something for the pain and sent me home with some pain pills. I took those but they did not help me.

The next night I was back in the hospital. I did this for about a week and then finally, I went to the hospital they admitted me and called in an urologist. They told me that they would like to put in a stint and get the stones out. So I went through my first surgery but this would not be my last.

They would end up taking out my gallbladder and doing two colon tests. I was told I have irritable bowel syndrome (IBS) and also endometriosis. They had to burn off some of the endometriosis when they did my gallbladder removal. After they took out my gallbladder I was doing good. There was not a lot of pain. I was only having yeast infections that I could not get rid of and painful intercourse. I did not think too much of this.

I went to a new gynecologist because the one that I was going to, told me that he had not told me I have endometriosis so I do not have it. I knew that I had it because another doctor had burned some of it off and my gynecologist knew this. I went to the new doctor and told her about all the problems that I had been having. She told me that the painful intercourse was because I had a uterus that was laying back on my bladder and this could be also causing the urinary tract infections (UTI) and all the pain.

I was happy with this. She wanted to see me back to watch this. I went back to see her again I had another UTI and it was a bad one. I went to the doctor and she said that they did not see a lot of problems when they did a culture. I was surprised because I was having a lot of pain and I could barely move. They decided that they wanted to send me over to my urologist. I told them that the one I was going to I did not like but there was one that I heard was good that I would like to go to. So they made the appointment and I went to him. He gave me a new type of medicine. I took this when I knew that I was having a UTI and went back to him. He told me that it sounded like it was interstitial cystitis (IC) so I was given the option of having the test then or waiting for a flare up because I was feeling fine. I told him to do it then and get it over with so that I could start treatment if it was IC. He told me that sometimes they put you to sleep for the test.

I was one of the people that they did not put to sleep. They filled my bladder and it was so painful. I cried and screamed the whole time. He kept telling me that it would be over soon. As soon as he got my bladder full he said that he saw it. I was happy to have an answer and know that there is something out there that can help me. He gave me some medicine for this and told me that it was not curable but that we could make it feel better and gave me some information and told me some web sites to go to in order to find more information. The test that he did sent me into a flare but it is not as bad of a flare as I have had in the past and I now know what to do to soothe the pain.

I am just happy after two and a half years to know that I have a real answer and I can get better. I now have my life back. I only missed out on my senior year and most of my junior year too. I am now in college and know that I can never go back to that time but am just glad to have an answer. My long time boyfriend is there for me and being very supportive in my time of need. When I have a flare, he is there to help me in any way that I need it.

To Contact the Author

New email address needed 07-19-06 SLE
Old Email Prefix: shellshell
Story edited 12-27-04
Story posted 1-3-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Interstitial Cystitis
Irritable Bowel Syndrome

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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