• 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.

 
  • Posted by MS.T
  • 03 Feb 2010

I am a 33 year old female. I have been living with IC for over 10 years now. I have to say it has been a long haul and I am still pressing on. I have more bad days then good but you know I won’t complain. I have had a lot of surgeries. My first on was when they went in to see how far I had progressed. The next surgery was when they scrapped out all of the polyps out of my bladder. I can honestly say this was one of the worst surgeries I ever had. I was hooked up to a morphine drip afterward and that didn’t help. Can you imagine having urine in your bladder after the have gone in and scrapped everything out. All I wanted to do was scream but I was in a hospital. They put in a foley for at least a week. I was just suffering. I didn’t want to be touched at all. The next surgery was to try to stretch out my bladder so it could hold more urine. That surgery did not work. I was stuck with a foley for another week. I was told that I have a very small bladder. My bladder does not hold as much urine as a normal person’s would. That makes having IC even worse because it already makes you go a lot so I go more than a normal person with IC. Man life is grand. I was put on meds after the first surgery. My medication was not strong then. I don’t recall being on pain meds then just antibiotics and  Prosed or Pyridium. Why can’t they find something that won’t change your urine and underwear colors. Lol I just thought I would add that. Things started to go down hill for me when I could not urinate. I would have to go to the emergency room because you can’t have urine in your body for over a certain amount of hours and I would be pass that. The ER would only catheterize (probably spelled wrong I’m not good at that meds make me trip) me. So when it got worse I had to learn to use a catheter in myself. I have to say I hated that. It hurts so bad going in and I don’t care how much I do it I still tense up. Tensing up only makes it worse. You get it over with and when you can finally urinate on your own it burns like hell. I mean come on why aren’t catheters made of some sort of soft material so it won’t do that. I still use catheters now over 10 years later. I’m a lil tired I will be back later if you have any questions or comments feel free to do so.