going for my 1st instillation tomorrow....

[Shmerie]

I am fairly new to this site and thank god that I found it! All of you have been so wonderful and supportive, which is exactly what I need right now.

I have been on Elmiron sincem being dx'd April and just started taking Prelief. I am in pretty constant pain and taking about 5 Vicoprophen's per day. When I called in a refill today my dr told me that he wouldn't refill it for me and that if I was in that much pain I should go to the ER. I just started to cry! I have two kids at home and my husband works late so that was out of the question and I felt betrayed that I was now being treated like a drug addict. Not once have I been given any other options, nor did he explain to me exactly what IC was and how devastating it can be (I learned what I know from this board). I cried as I explained this to his nurse and said that if he would just give me 5 pills I would come and see him first thing tomorrow. She put me on hold and said that he didn't have any appt's and could give me the names of pain specialists. I nearly flipped and BEGGED her to do something - ANYTHING. I explained that I found this board and I KNEW there was more than Elmiron and a pain specialist out there (besides - I have been to a pain specialist and his recommendation was physical therapy!@!). I asked to talk to my dr who was obviously avoiding me. After continuing to plead with her and being put on hold 2 more times, she came back to tell me that the dr would give me 5 more pills and do an instillation of lidocaine and elmiron tomorrow morning. I would love more information from anyone who has had this done. does it work? am I still going to be in pain? I am scared to death that they are just going to do this and hang me out to dry if it doesn't do the trick. I am in so much pain all of the time and the only way I get through my day is by getting some measure of relief from pain meds. I can't believe they made me BEG. It was humiliating and frustrating to be treated like that.
Also - another fear I have is what being on Elmiron and pain meds is doing to my liver. Should I have a liver function test? Has anyone had trouble?
Thanks in advance for the support all of you give to this board. Your support has given me strength and helped me admit that what I have is life long and that there are ways to deal - we just need to have the persisitence to find them.

Shmerie

[kelly McC]

My first install was a bit uncomfortable. The rest were much easier. I get heparin installs. I try to rest the rest day use ice or my heating pad and drink plenty of water and take my meds.
Huggs,
Kelly

[ICLori]

Shmerie, it is likely that the only person who will put you on narcotics full-time IS a pain management doctor. I have heard anecdotal reports of other doctors being comfortable prescribing narcotics long-term, but for the most part, most doctors do not want to do this due to physician prejudice against narcotics, fear of the DEA, etc.

I had my first pain management meeting the other day. They gave me two months worth of Percocet at that first meeting.

Wouldn't it be better to go to a pain doctor and get help, than to either be in pain or have to play these games with your doctor?

Please reconsider going to a pain specialist, they really can help.

Oops I see you have been to one, but please don't give up, not all pain management people recommend physical therapy instead of meds. You might have to go to several before you find one that treats your pain.

Also, have you been given Elavil to try, Atarax, etc.? Many IC'ers get significant, immediate pain relief with Elavil and since it's a tricyclic antidepressant rather than a narcotic, your doctor should not have any problems prescribing it for you.

Hope you feel better soon,
Blessings, Lori

[Ginny]

Shmerie,
Elmiron and Lidocaine installation should not hurt. One installation is not going to take away the pain. It might help but I doubt that it will stop the pain immediately. Most doctors do the installations in a series of 6. I had them done but with oral pain medication.

ICLori is correct. You would have a better chance of getting pain medication from a pain specialist but it is not easy finding one quick. It does not sound like your Urologist is going to work with you on this but if possible ask him for pain meds until you can get in to see a pain specialist. If not try your PCP.

Is there anyone on this list in your area? Maybe they could recomend someone.

Ginny

[Shmerie]

Thanks. I will take your advice and try to find another pain specialist. I was just disenchanted with the one and only that I saw. Hopefully today goes well.
Shmerie

[Katrina]

I do think Lidocaine and Elmiron installation should be pretty good. I have compiled a list of pain relief methods for IC....some of which you may never have heard of but are very safe and do help IC. Look through the list...Some things you should check with your doctor first. Hopefully they can help get you through this time untill you get relief. In some areas I have more information if you ask me. If there is anything else I can help you with let me know.
:grouphug::grouphug::grouphug::grouphug:

IC Pain Relief Methods (This list put together by Katrina)

This list is for when you are already in pain


• Ice/Cold (I believe alternating between hot and cold is best)
o Ice packs
o Ice
o Cold spray water
o In a water bottle
• Drinking almond milk
• Drinking baking soda and water mix (about 1 teaspoon baking soda per glass)
• Herbs
o Marshmallow root (althaea officinalis) helps sooth irritation and inflammation due
o Licorice (glycyrrhiza glabra and g. uralensis) good for inflammation and anti allergic but should only be used short term
o Uva Ursi (arctostaphylos uva-ursi) is an antiseptic of the urinary track also used as a diuretic, also for inflammation…also only for short term use
o Black Cohosh (cimicifuga racemosa) not good for me since has similar effects to the hormone estrogen. Is used as a sedative and to relieve menstrual cramps. May have anti inflammatory effects. Avoid large doses.
o Catnip (nepeta cataria) eases menstrual pain, soothes the nerves, and as a sleep aid.
o Chamomile (Matricaria chamomilla) mild sedative, creduces inflammation, relieve menstrual cramps, http://www.ic-network.com/cgi-bin/ustorekeeper.pl?command=goto&file=Foods-Tea.html
• cornsilk tablets are unreal!!!!!
• Drinking a burger king milkshake
• Resting/relaxing (some goes as far as to say laying down….at times I could only lay on my side)
• Acupuncture (Check page 6)
• aroma therapy (either in a warm wash cloth across face, in a bath, inhaled from a bowl of steamy water, vaporized on an oil burner, sometimes candles, applied to the skin, or taken orally)
o almond oil
o lavender
o lemons oranges
o all essential oils
o honey
• reflexology (see page 7, 8, 9)
• physical therapy
• Yoga mine see page 10, ICN: (http://www.ic-network.com/shop/)
• Prilosec OTC or something...not so much for pain but because it is newly non prescription acid reducer
• Water (drinking plenty of water helps with burning pain and helps dilute urine so that it is less harmful to the bladder wall
• TENS unit Ask your doctor for a TENS unit. A TENS unit is believed to work by providing another source of stimulation to "divert" the brain from paying attention to your bladder. It's based on the spinal gate theory. Some patients find TENS very helpful while driving, or in situations when a pain medication isn't appropriate.
• Migraine Ice Patches
• Tylenol with 4 Prelief (many non prescription meds can hurt the bladder….be careful and watch out for what bothers you) http://www.ic-network.com/handbook/nerve.html
• Topical analgesic…Menthol example ICE Blue Gel
• Heat
o Thermal Care Heat wraps
o Heating pad (http://www.ic-network.com/shop/)
o Thermal care adhesive body warmer (http://www.ic-network.com/shop/)
o Spraying heated water
o a microwaveable pad (http://www.ic-network.com/shop/)
• Extra Prelief (http://www.ic-network.com/handbook/prelieffactsheet.html)
• Taking a shower or Tums if your desperate
• Warm Baths (NOT HOT!!!!) No bubble bath or strong soaps, please! Soft soaps, perfumed soaps, bath salts & bubble baths can be very irritating to an IC patient. However, you can put baking soda in the tub for extra comfort. SITZ Baths Definition: A sitz bath (also called a hip bath) is a type of bath in which only the hips and buttocks are soaked in water or saline solution. Its name comes from the German verb "sitzen," meaning "to sit." I recommend: (a tub divided into two …one half is filled with hot water and the other cold. With part of the body on one side and than switching and back again in quick succession)
• Foot baths
• Visualization [relax your mind. Make sure you are warm and comfortable, and practice deep long breathing, concentrate on the rhythm of your breathing, as you breath imagine the air going in and out of the painful area (such as the bladder), As you inhale, imagine a warm glow healing the pain, and as you exhale, imagine the pain being expelled. Next imagine your pain as a red ball, now take that wipe it with your washcloth, as you wipe the ball gets lighter and lighter in color, keep whipping until the ball is white.] That was 2 examples do what suits you best.
• Trying things to distract you
o Listening to music
o Watching a movie or TV (some choose to have tapes ready for late night flares)
o Reading
o work on a craft or project
o spending time online
o writing letters
o Working around the house (Do what feels comfortable to you. Don't push it.)
o Being constructive and helping others
• Venting here or to friends
• Hugs
•
• Praying
• Staying positive….believe the pain will end
• Meditating (http://www.ic-network.com/handbook/meditation.html)
• Ask for help if you need it (family, friends, doctors)
• Instillations (http://www.ic-network.com/handbook/instill.html)
o DMSO
o Heparin
o Marcaine
• AZO for Urinary Pain Relief or URISTAT
• Ask for a foot message from your spouse or partner (actually I think it is the receiving one that helps with the pain :)
• Pain meds patch
• Pain meds oral (Remember, the earlier you catch a flare and pain, the easier it is to stop and the less medication it can take to stop it. So, don't wait until you are crying and desperate... because that allows that pain cycle to get firmly started. Try to catch in early!) (http://www.ic-network.com/handbook/painmed.html)
o Oxycontin (Pain med’s are recommendations from other ICers)
o Pyrradium
o Perocets
o Klonopins
o Neurontin
o Codein
• Cold water in a balloon in vagina
• Taking slow deep breaths/other breathing therapies (http://www.ic-network.com/handbook/breathing.html)
• Practice relaxing the muscles near the bladder
• Put some work into lessoning your stress
o Use art to help visualize and express your stress…you can even use it to visualize and than erase your pain
o Spend time your pet!!
o Play with your children or with children (if you have none of your own)
o Sing (you don’t have to let anyone hear you)
o Listen to a guided relaxation audio tape to relax your body. Commonly available at book stores, we recommend the tapes by Potential's Unlimited (Barry Konicov). If you can't find those, try the Health Journey's series of tapes. [http://www.ic-network.com/shop/]


NOTE: AS WITH ANYTHING BECAREFUL….AND IN RISKY THINGS ASK YOUR DOCTOR BEFORE TRYING NEW PAIN METHODS!!!!!

[Sarojini]

Katrina's list is a good one :) Lots of helpful tips.

Also, I agree with Lori... it may be good to go to see another, different pain specialist. Like any doctor, you make like some of them and you may not care for others... they're all different.

I hope everything works out for you! :)

[Shmerie]

Well, the instillation went okay. The dr would of course not see me for whatever reason. I felt great for about a half an hour and once I expelled the stuff the nurse put in my bladder the pain came back in full force. I took one of the 5 pain pills he allotted me and felt better. The pain is back, but not quite as bad. I made an appt to go back and see the pain spec in a couple of weeks (the only office in my area). As I mentioned, he wanted to me to go to PT and of course the only lady who sees IC patients is not taking new pt's until 9/1. I read the IC pt handbook and will take the advice that all of you have been so kind to give. I have no idea how I will handle the pain if it comes back in full force, but I'll tackle that one when it happens. Thanks for the kind words and prayers.