• Posted by Cathy
  • 30 Nov 2009

Ok I’m very sorry that it’s been so long since I’ve added any updates. Sept, Oct, and November have been very hard months for me. The very beginning of September, I was taken off of my hormones. There was an issue in my very last cystoscopy with the lining of my vaginal wall, they found that it was very thin. So I went to see my gynecologist a couple of weeks later and he told me that the vaginal wall lining looked perfect. BUT, he did say that was a characteristic of IC to have the vaginal wall lining thin and then plump back up. So….he then told me my worst fear…I was supposed to come off the hormones. If I got a period and the pain got to bad then start the hormones again, that day and continue taking them. He didn’t want to start giving me estrogen pills he would prefer if my body would produce it itself. So that was September 2nd. About a week later I started feeling lethargic and I got really depressed through the 3 months. Well, after my birthday on the 7th of October, I got this horrible feeling. It felt like I was going to have my period. Now I had been expecting it for the whole time, and I had been hurting for about a week after I stopped taking the hormones. So the increased pain lasted for about a week. This had brought my pain level from about a 7 out of 10 to a 9 out of 10 that week. After that week I went back to a 7 or 8 out of 10. I started feeling ok. I had another uro appt. and he wanted to get my battery (interstim) fixed (adjust the leads with a programmer thing and then see what happened after that. I had missed my appointment with my pain doctor due to this. So about the 2nd week of November it hit me from out of nowhere. I was feeling pretty lousy anyway that day, then the pain increased throughout the day, I got up to a level 10. I was to the point where I had been outside, and I came back in and I couldn’t make it to the living room so I laid on the floor. I kept thinking great here we go again. My dad and step mom came and got me up and pretty much carried me into the living room. I laid down tried listening to my relaxation cd in the dark to calm down. I had had some pretty sharp pains earlier in the day and had some success with doing the breathing exercises I had learned in the CD (great thing to have I got it on the IC Network web page). So this time it didn’t work. I figured I was going to the ER, which I hate doing. I called my uro and he told me to take extra oxycodone when I needed it. Well, I take 15 mg every 2 hours and by the time I was relaxed enough to go to bed I was up to 75 mg. This had started (intense not giving up pain) around 6pm. So I went and got to bed, woke up quite a few times. I called the gyno in the morning, it was a day he wasn’t in. I knew I was going to get my period. It was one of those feelings you have (the girls reading this will know). So I went and I waited for the next day. I had still been taking quite a bit of oxycodone but was able to slow up a little bit. The next day I called in the morning, and then again in the afternoon. The nurse finally got a hold of me in the afternoon saying that I could go back on the hormones. So I did. It took me about a week and a half to recover from all of this. So I still had my battery appointment. After this pain and before the next appointment I started feeling a lot better. Got to a pain level of about 5, which is so great for me. So I went and got the leads adjusted with my battery on Tuesday (this past Tuesday the 24th). So I had been doing pretty good. We reset 2 programs that had not been working for me so I had 2 new ones to try out. So we had left the one on when I left the uro’s office that day, I woke up the next day in horrible pain. I had gone right back up to a level 8 or 9 pain. It got up to a 9 by the end of the day. I turned it off that evening. I was feeling better on Thanksgiving morning when I woke up. I was so excited, it’s been 4 years since I’ve had a great holiday with no pain, or anything sticking out of my back from surgeries. I was looking forward to my first great holiday! However by mid afternoon I was feeling really horrible. I was back up to a pain level of 8 and it just ruined my holiday, I could hardly eat my dinner I was so upset, which doesn’t help IC. So I was still recovering yesterday (the 28th). But I decided that evening to give the other program a try and see if it would help. I did and the next morning when I woke up I was feeling worse again and just didn’t even give it any extra time. I turned it right off. So I’m back to no battery!!! When I had my last uro appt I had asked him about the neo bladder surgery I would still have the stoma, but I would have to catheterize it and go into a neo bladder and then I would not have the bag anymore. He said he wouldn’t do it because I was in too much pain still and the recovery for that surgery would make the pain worse, not to mention having the extra “bladder” in my internal area which would cause more pain. So…..I was really upset about that. But when I went to get the battery adjusted I talked the the nurse practitioner and she said that I would have to go for about 4 months with little to no pain before I could have the surgery. So…I’ve had about a week with the bad pain. But I am going to recover and then I can look forward to my next appt which she said would be close enough to 4 months that we could bring up the subject again!!! So there’s still hope. I’m praying I’ll be on the road to a level 5 very soon, and then if I’m that low with my pain, we can do the surgery. So I’m praying extra hard these next 4 months so I can be rid of this horrible bag!!!! So on the road to the 15th and hopefully last surgery. P.S- I want to remind everyone that when or if I take extra medication it’s because I called my doctor and spoke with him. PLEASE PLEASE PLEASE don’t do this on your own. Make sure you have a very good relationship with your doctor and be able to talk to him about EVERYTHING!! I am able to call my doctor, he always has the operator page him for his own patients. So I get to talk to him all the time. This may not happen with everyone. So before you take extra meds or change anything, PLEASE talk to a doctor. I make a habit of calling my doctor before I go to the ER. He will ask me to try something sometimes, other times he tells me to come right in. So call before you go to the ER, it could save you a trip and lots of money!!!!