• Posted by Cathy
  • 12 Oct 2013

I’ve been having extremely painful urethra pains. I wake up in the middle of the night thinking I’m going to pee right there on the spot! And it hurts so much. The 1st night it happened I was at my bedroom door hand on the knob ready to open it when I woke up enough to say hey I don’t pee like that!!!! I went back to bed, tossed and turned, finally got back to sleep before I woke up again. This continued for 3 straight nights before I finally called the uro and he sent the paperwork in for my nerve block. He also put me back on the diazepam. I had taken myself off of it the last time I was in Texas. I’ve been off of the diazepam for 5 months. I’ve also been taking less of methadone and oxcarbazepine. But that I’ll let you know about a little later.

The idea behind the nerve block and diazepam is to help my pelvic floor muscles relax and help the urethra relax some also. I got my nerve block in September shortly after my appt with the uro. For some reason my pelvic area just reacted bad and I had such horrible pains. Sometimes I’ll get some pain after the blocks, however nothing like this. I was 3 months overdue. I’m allowed to get nerve blocks every 3 months. I had a busy summer, helped out my college roommate when she had shoulder surgery, and went to see my friend in Texas in April. Also, some dog and house sitting in between and made for a busy summer. Ok let me get back on track. I stayed after the nerve block for quite awhile while I was waiting for the pain to stop, I was really worried I would have to stay overnight in the hospital. I started feeling a little better and got a shot of toradol and took off for home. By the next day I was recovering nicely. I felt ok for a few days and the urethra pain started up again. I used lidocaine cream and put it on my urethra so it would help and let me tell you it works wonders!!!! I am going back to the doctor’s Thursday and hopefully can get some lidocaine shots in my urethra. It hurts but it feels better in the end!

I decided to join weight watchers in January of this year with my mom. Thank God for her she is so much help with encouraging me and helping me. I have lost 38 pounds!!! It was 45 but when I had my flare up I gained 7 back. So I am back on track and going stronger then ever. One thing we decided in our last meeting, well that we all promised was to get up every hour and be active for 5 min for the whole day. I normally walk once a day whenever I can but lately it hasn’t been working out. I’m getting back in the habit of walking more. Thursday I had 11 exercise points!!! Trust me when I say that is a lot!!!! Since then I’ve got 3 for the last 2 days. I’m working slowly but surely. I’ve had some bladder pain today off and on. It’s been happening when I’m walking every hour. I’m kinda worried because I want to keep up the 5 minutes of exercise every hour, but…..I’m just going to do the recommended 5 min instead of how I am doing 10 instead. Good news about losing weight is that I can take less medicine and am more alert!! I am no longer a zombie that sleeps and so zombie like I practically drool. I can actually remember things, well a little better, and can stay awake longer! My days are a lot better. :-)  However I am having some insomnia issues, I have sleeping pills but I don’t believe they’re working anymore. I tried the other day to just put my book away, turn my light off and close my eyes and I’d just fall asleep! That started at 12:30 the last time I looked at the clock it was 3:30! That didn’t work out so well. Thursday night I FINALLY got a good nights of sleep and it was wonderful!! Since then not so much. But I’ll figure something out. If anyone has any suggestions let me know.

I have set up Twitter for the site, got a new gmail account and also started a Facebook page!!! I have a few more ideas but if anyone else has any ideas let me know. Thank you everyone for all of the support!!!! I really appreciate it!!!!! Thanks everyone!!!!!!!

 
  • Posted by MS.T
  • 05 Feb 2010

Well let me move on to the next surgery. With so many issues with me not being able to urinate they thought something needed to be done. So I was put into the hospital where they tried the stretching again but this time they put in some medication that was suppose to help it stay stretched. They did nothing but cause me a whole lot of pain. At this point I was tired and I told them that they were not gonna do another surgery. I have to say for the first maybe 3 years the pain was manageable. I was still able to enjoy my life. I was working and partying like always. Then I got a pap smear and it came back that I had some cancerous cells. So here I went again..with the surgeries. I had to have my cervix scrapped and frozen. I have to say having your cervix frozen is the weirdest thing I have every felt. I could feel it melting all day and night. Just imagine someone putting ice in your vagina and you are walking around while it melts. That is a real crazy feeling! LOL!! Thank God they were able to get it all no chemo or anything like that. For that I am more than grateful. They thought that I had endometriosis. That seems to run hand in hand with IC which is rare but I know a lot of people have both. Go figure. MY IC started to flare up again after I had an upper and lower GI for my ulcers. This is when the pain started to interfere with my daily life. At this time I had no insurance so I was going through the medication companies to try to get help with paying for the meds. At this time I was on Elmiron, Macrobid & codeine. The pain meds were not easy to get though. I moved to Texas and I was doing great for the first couple of months. I got an infection out of this world and they couldn’t find the right antibiotics so this started a flare. I started seeing a new urologist so you know that meant going through so of the same procedures all over again. I had the stretching and polyps surgery again (Hydrodistension). I was still have problems with urinating and it began to vary some days I couldn’t go and others I couldn’t stop. They asked me to keep a diary of the times I urinated and I had to measure the amount that was coming out. I did this for a month so they could see what was happening. The doc said that when I urinated I was not emptying out my bladder fully. The next surgery he tried to do something to where the hole from the badder to the urethra would get bigger. I can’t tell you what that was called because I don’t recall. When this didn’t work he had me to start using the catheter 4 times a day. I hated this but I wanted to feel better. During this time I got a pain management doctor who first prescribed me Loratab. I have to be honest when the drugs became more powerful I got scared so I wasn’t taking them. I didn’t want to become an addict. I would see him once a month and he was beginning to wonder why my pain was getting worse every visit. One day he asked if I was taking the medication as he prescribed it and I said no and he had a fit!! I had to explain to him why I wasn’t taking it and he understood. He gave me a good tongue lashing and I started taking the meds. They kept having to change my medication because it wasn’t working. My urologist finally decided to tell me that I was the worst IC patient he has ever seen. He has been a urologist longer than I have been living, that wasn’t good too hear. He was honest and I asked to always be that way. The next step was these DMSO treatments. These things are horrible. You lay on your back they put in a catheter and then they push in the DMSO medication. You lay on your back, and both sides for 10 minutes each. You have to keep this liquid in for 30 mins. I can barely hold my urine that long. You do these treatments for 4 weeks once a week. The medication burns the inside your bladder and when you urinate it out. For me, my bladder burned the entire time the treatments were going on. I have this done at least 5 times or more and it didn’t work. The DMSO medication is suppose to help re-coat you bladder walls. It didn’t change mine. It also is suppose take care of the inflammation you are having in your bladder. That didn’t work for me in that way either. I was tired by this time. You know you get tired of being poked and prodded by doctors. Well it’s 3:30 am I need to try to get some sleep. I will finish real soon.