I think that I can remember symptoms as far back as 1997. I had a C- section in 1995 and then another in 1996. I had a tubal ligation during the second C- section. After my second child was born, I went to the urologist because I was having a lot of frequency and pain. Dr. M said it was cystitis and put me on antibiotics. Two weeks later, I went back and he said I had the same thing, more antibiotics and the little pill that turns your urine blu-ish. Within a month, I went back and he diagnosed me with chronic cystitis and did a urethra stretch and more antibiotics…..I think I stayed on macrobid for 6 months. The symptoms went away and in the spring of 1998 I moved to Va. While I was there, I could not go to the bathroom one day and was crying from the pain, so I went to the ER. They gave me some meds and sent me to a uro there who did a cystoscopy (sp?) and said that I was passing blood because I had ulcers in my bladder. He did not, however, say anything about IC…at this point, when I look back, now I have a sneaking suspicion that I did have IC, or at least the beginnings of it. He also put me on antibiotics and sent me home. Eventually, the symptoms subsided.
I moved to SC in 1999 and didn’t have any pain until the end of 1999. The pain was that sharp, double you over, cannot take a step if my life depended on it, pain. I went to my OB-GYN, Dr. A and he went in through my belly button with a camera and said that he found scar tissue from my C-sections had adhered to my bladder. He used a laser and cut away the scar tissue and I felt better after that, so I thought that the ordeal was over. Shortly thereafter, I went through a serious depression and was placed on anti-depressants. I didn’t have any symptoms through the year 2000 and to the end of 2001. I also didn’t have but 3 or 4 periods throughout this time, either. My OB-GYN at the time, Dr. B, said that everything looked fine and she put me on the pill. I got off of it 2 months later because it made me so sick.
Then, in the summer of 2002, I started having the pain again. I tried everything I could think of, but it got worse and worse. The pain was so bad, that I would be walking down my hallway and have to stop, because if I took another step, I thought I was going to tear apart. People who have never had this kind of pain will never understand how bad it really is. I was losing sleep nightly from the urgency and frequency and pain. I would lie in bed just sobbing because it hurt so bad. By this time, I was urinating up to 60 times a day, no lie! I was a prisoner in my own home! I couldn’t ge anywhere, do anything because of the pain and frequency. I got on the internet and researched about my symptoms. I found some information about IC and thought to myself, that’s it, that’s what I have. I just knew that I had IC!
Finally, my husband told me that if I didn’t go to the doctor, he would drag me there. I went to my new OB-GYN, Dr. S and she said that she thought I did have IC. She put me on Elmiron, 200mg. a day, and she sent me back to the uro, Dr. M, who I had seen in 1997. He sent me to the hospital to have my kidneys and bladder function checked. He said my kidneys were fine, but I had a small capacity bladder. He tested my urine, which had blood and pus in it, but no sign of infection. He tried to do a cystoscopy, without anesthesia, I might add, and I screamed at him to get it out of me, the pain was that bad when he tried to fill my bladder. He said that I did not have IC. That he had only seen 2 patients with IC in all the years that he had been in practice and that they had both had to have their bladders removed because of it! He did, however, tell me to stay on the Elmiron, gave me an Rx for Elavil, and told me about Prelief. Now, aren’t all those things used to treat IC? Hmmmm, puzzled, I went back to my OB, Dr. S, a few months later when my symptoms did not improve. The pain was still excruciating. She told me the only thing she could think to do, since the uro did not think that I had IC, was to do a hystorectomy. At this point, I would have tried anything. I was desperate for the pain to go away.
I did have a hystorectomy in Oct. of 2003. I was only 32. The pain lessened. I think because I didn’t have periods anymore. But, as usual, the pain came back. I cried and cried, thinking that I had given up my womanhood for nothing. I decided to get another uro’s opinion. I went to see Dr. D shortly thereafter. He listened to my story and did a cystoscopy under a general anesthesia. When I woke up, he said that I did have IC, and a severe case of it. He prescribed Detrol and a higher dose of Elmiron. The Detrol did not help with the bladder spasms, so I switched to Ditropan XL.
April will be a year since I was diagnosed. I still take the Elmiron. I quit taking the Ditropan because I would get spasms every time I took it. I have good days and bad days. The frequency has reduced to about 15-20 times a day. The urgency comes and goes. I can tell that my days are getting better. The only complaint I have is the lack of REM sleep from urinating at night so much. I am about to go psychotic from a lack of real sleep….lol. I still have flare ups every couple of weeks that last from 2-4 days. Some days I have hope, some days I have none. There are no support groups here in SC that I know of, so anyone who wants to talk, or vent, I am a good listener and could use the support. My hubby is supportive, and my children love me even though I cannot do the things with them that I once did. But unless you have this disease, you cannot understand the helplessness you sometimes feel, the hopelessness that overtakes you on bad days. Thank God for the ICN. Just knowing you all are out there, feeling what I feel, knowing what I mean, well, it means a lot to me. Anyone who needs me, I am here…:O)
God Bless all and thanks for listening.
Tina
