What is Interstitial cystitis IC
Interstitial Cystitis (commonly abbreviated to "IC") is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as ...
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I just recently switched to a new pain management specialist. I was a litlte surprised by our first appointment. I talked to him about all of the things that I've tried to manage my pain, including taking Vicodin, trying Elmiron, doing DMSO installations, and physical therapy. The Vicodin helps temporarily, the Elmiron did a little, the DMSO installs did not when I last had them done and the physical therapy caused me to have a horrible flare that lasted over a week. I still ice every day and use TENS therapy, which also provide temporary relief. My doctor said that I've pretty much tried everything that he can think of for the pain so, he suggested that I try Hypogastric Plexus Block with IV sedation. I was confused because I had no idea what this was. He said someone will have to drive me to my next appt. because I will be heavily sedated and he will put a few needles into my lower back. It sounds like it may be painful and I wouldn't be able to work that same day. The thought of getting this done scares me so I need some advice. Have any of you ever heard of this kind of procedure or ever tried it? I guess the shots are supposed to block the pain that leads to my bladder. It blocks the nerve sensation to my bladder and I will have to get one series done one week, then the following week, and then possibly a few months later. I am scared. This is not what I had in mind. If they don't work, then I miss out on being at work, especially when I need the money. I don't want to miss any work and I'm just scared of the thought of a needle going into my back. He said he's willing to prescribe Vicodin if this procedure does not work and I'm also reconsidering going back on Elmiron. Elmiron did work somewhat in the past but... my husband had a skin reaction to this medication so I stopped taking it. My doctor also suggested that I see a psychologist. I used to see one a few years ago and it helped a lot but I'm to the point now where I don't feel like I need to see anyone, especially when my doctor is the one who chooses the psychologist for me. I don't like this idea. Part of me wants to give this entire thing a try... the series of shots and seeing the psychologist one time just to show that okay, I didn't like my last doctor's advice but I'm willing to try this one. It's just not what I had in mind. I'm still hopeful that PT will work again and that the Vicodin will work for the days when I have severe flares. I'm just don't feel like talking to a psychologist about this because in my mind, it's not necessary but my doctor said that all of his pain patients are required to see the pain psychologist. I'm a very happy and positive person and it took years for me to get to this point. I always try to turn the pain that I have into some positive. I love my job because the pain is very minimal while I'm working and that helps me maintain a great attitude. I really need your advice... do I go through with the shots and see the psychologist (which may not be covered by my health insurance) or do I give up on my 2nd pain management specialist and try to find a new one? My honest opinion is...I know he wants to help me and I think he is afraid of prescribing Vicodin on a monthly basis. I do not take this medicine every day, but lately the flares have been pretty bad and I was honest with my doctor about taking it almost every day in the past month. What do you think? Also, have you ever seen a pain management specialist? Thank you for taking the time to read this! I need some help!
Laura Posted on 11/06/09, 06:11 am |
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Laura ~
First and foremost, I have learned that it is best and wise to trust yourself and your own understanding of your body. Doing that while working with doctors that you know and trust seems to be our best hope ~ since this condition is so individualized! We each have to figure out what is working best for ourself....and that gets exhausting! Hold on, my friend! You are not alone :) Last week I had a day where I thought I was at my wit's end....I had no idea what was left to try. And I've been in a flare that has lasted over two months. That's a real place of discouragement! But the next day, I had an appointment with my Urologist, who gave me my first instillation treatment - and I felt practically without pain for the first time in....months and months! Hard to find words adequate to describe that feeling. I will add this was not a DSMO -- all it was included heparin and lidocain - and it was wonderful! I hope that it will keep working - but I fully believe each of us is different and responding differently. Personally, I did not have good experiences with pain management persons. Many here have though. So consulting and listening - and then doing what seems right is the best you can do. You seem to have some hesitations to consider before proceeding. I'd say you are wise to stop and get some opinions and maybe research online before deciding. But...it is your decision. :) I do know that any movement that causes me to bend my bladder, (like toe touching, or leg lifts or even sit ups) eventually seems to help contribute to a flare. I'm not sure what I'm going to do for exercise. Even in the pool, with gentle movements, the movement/bending of the bladder area causes pain and flare. My best advocate is my urologist. She is willing to try other things. She also put me on pyridium but I had a reaction - so she changed it to urelle...which is still very helpful for me because it works inside the bladder to sort of numb the stinging pain. And I am also very attentive to my diet, making sure to not eat things that cause me pain. Even when I start to feel better, I don't risk trying things that have already been an issue for me. If they cause me pain once, I'd rather not risk them again! Thanks for sharing here..and making this a place where we can group think...and share our experiences so that you can choose and make decisions about what is best for you. Keep us updated! We care! Warm hugs, Kathy 
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I have never heard of anyone else doing this, but I have. I did four sessions. They were actually one of the only things I have done that helped. For me they not only got rid of the some of the bladder pain, but they got rid of the surrounding pelvic pain.. especially around my vagina, ovaries, and uterus. It also helped me with IC bloating we all get that is really annoying. The procedure is simple enough. They sedate you to the point that you can respond to questions they ask, but you really aren't aware of whats going on. There is a slight pressure when the stick in the needles, but it just feels like someone is poking your really hard. Then when you wake up you might have some trouble standing and walking around for the first half hour. But I promise if you do get up and force yourself to walk then about an hour and a half after that all the side-effects are gone. I was shocked it worked as well as it did. Nothing helps me, but I really did get relief from this. It is definitely your decision, but as someone who has never really had relief.. I think its worth giving it a try.
I don't know what to tell about seeing a psychologist without coloring it with my negative experiences. I do know that it helps a lot of people who are chronically ill. My father saw one for most of my life, and while never touched his pain in any way, it did help him learn to deal with more and accept how it had changed his life. But maybe these two things together can give a different and better quality of life. I think that is always worth a try. Good luck darling :o). Don't be so frightened. We're all here with you!
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Ask your doctor for side effects and what are the odds of it helping. I had several injections in my lower back and hips. It did not help me at all. I now have severe low back spasms as a result of the injections. Pray about it and do your research darlin. I wish you the best and I'm here for you if you'd like to swap some stories. Hugs, Marci
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Hi Ladies,
Thank you so much for your responses! Kathy, I'm so happy for you. I'm so glad that the installations are helping you! Please keep me posted, I hope you continue to feel great. :) Brit (Liter8ure), I appreciate your advice. I'm leaning towards giving the shots a try, after reading the postings on here and doing some research too. I hope they help me as much as they helped you. I'm sorry that your father has struggled so much. I'm glad that his psychologist was able to show him how to accept and handle the pain. Please keep me posted on how you are doing. Marci, I'm so sorry that the injections did not work for you. Are you currently trying any new treatments? Have a wonderful day! Thank you for your support. :) Laura
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