• Posted by Cathy
  • 04 Apr 2009

It’s been a very long time since I’ve written a post on here so it’s time for an update! I’ve been seeing a pain doctor at the Palliative Center in the Cancer Center at Strong Memorial Hospital. He has put me on some new medications. I have had my methadone increased and I now take 15 mg of Oxycodone every 2 hours. I know the oxycodone is the only thing that is keeping me from the ER. I’ve had some good days, but the bad days have won. When I went to my urologist last, they did a super high test catheter treatment (definition to come with all meds included in this in the medication page, I will make a direct link from this page) that numbed my bladder really well!!! I went down to a pain level of 2 out of 10! A 2!!!! That is awesome for me, I live at an 8-9 everyday!!!! I was also able to hold it in for 4 hours!! However, it took me 2-3 days to recover, I felt like I had to urinate at night which they told me the catheter had inflamed my urethra, which was intensified when I laid on my side, and when I laid on my back I had pain, so I ended up getting to bed at 3-4 AM when I was just so exhausted I couldn’t keep my eyes open anymore. So the following week I got a pudendial nerve block (pudendial nerve is located on both sides of the vagina, and they could have gone through my vagina to do the procedure however the doctor knows how sensitive I am so decided to have them do it through my back with really long needles!!)! Holy cow! I was numb on my left side, I couldn’t walk because every time I did my leg would buckle and I would fall! So I walked around with crutches. The numbing was supposed to last 8-20 hours and then I would feel normal (as normal as I get) and the steroids would kick in. Well, it took me four days to recover from this because of the pain! The steroids have kicked in because I have been eating more then usual which tells me that they are taking effect but they are not helping me at all! I feel more pain now then before. (I will write more about the pudendial nerve block in the surgeries I’ve had section and describe exactly what it is.) When I do that I will make a link from this page to that one! So….I went to the pain clinic last week to get evaluated for a pain pump (I will put this in the glossary with a link as well), I was also going to go and get another instillation after the pain clinic. I was turned down for the pump because it wouldn’t help the kind of pain I had and I guess the side effects (like numbness in the nerves in my legs) would outweigh the benefits. Needless to say I was crushed I was hoping for something that would help besides all these pills! So I went and got another instillation treatment as well as prescriptions for all 4 meds so I could do them at home. The treatment went ok, my pain level went down to a 5, but I could really feel the pudendial nerves and I think that’s why I didn’t get as good of a result as before. I was able to hold the fluid in my bladder for 6 hours which is awesome!! I feel like I have to urinate right after the treatment for about a half an hour then it goes away. I had the same effects after with sleeping, feeling like I had to urinate, that feeling being intensified when I laid on my side and then pain when I laid on my back. It took about 3 days to recover. The day after the instillation I woke up and it felt like someone had reached up inside me during the night and pulled all of my insides out!!! The following day I had a lot of pressure. Then I had some sharp pains. I went to take a nap the other day and had pain that felt like it shot out of my vagina, and it went all the way down my right leg. So….I tried another instillation today! I’m supposed to do one once a week, and it will start building up and things are supposed to get better (with the urethra and feeling like I have to urinate and the sleeplessness [I have a lot of that anyway]). I was out all day, like I had been for the other 2. I was able to hold it in for 5 hours this time. I did feel pain where they went in with the needle for the pudendial nerve block, and pain in my hip, and the outsides of my bladder. I was at about a level 5 today. About 15 minutes before I urinated I got a really strong sensation that I had to urinate. I held it for as long as I could and I could only do it for 15 minutes. So I’m having a lot of pain on my right and left sides. I don’t believe the pain is in the bladder, I think I got really screwed up with the pudendial nerve block. I have to find out how long it lasts. Then maybe I’ll get some relief from the instillations. I’m going to keep trying with the instillations and see what happens. It’s supposed to help when you do them every week. There was talk about me doing it 2 times a week, but maybe that will come later! So that’s the scoop for now. I’m in pain and feel like I have to urinate so I think it’s going to be a really LONG night again. I see the pain doctor on Monday and I’m going to ask about some sleeping pills so I can get a good nights sleep! I have a cat scan on Tuesday to see if there are cysts and make sure everything is in place. The last visit to the urologists office I had a bladder scan done. Really cool thing, I never knew it existed! It’s like an ultra sound, however, they have a little machine, almost looks like a lunch box, that is connected to an ultrasound like part that they put directly over your bladder. They have to push down a little. The point of this is to see how much fluid you have in your bladder. I had it done 2 times. The first time I had 130 ML in my bladder and the 2nd time I had 140 ML. So the doctor thinks I could have a cyst, the nurse practitioner was considering mucus build-up in my bladder so they rinsed it out, no mucus came out. So this cat scan is supposed to give us some answers. So we’ll find out soon enough. My opinion is that if these bladder instillations are working so well, I don’t think the pain is residual pain outside of my bladder, I think the pain is still coming from inside my bladder. I’m going to ask my doctor to do another cystoscopy to see if maybe I’ve developed Hunner’s Ulcers.