View Full Version : Newly Diagnosed
08-10-2004, 09:57 AM
Hi, I have been newly diagnosed with IC on 6/18/04 after months of constant trips to the restroom and constant urethra pain. I have been experiencing pelvic pain for months too. My doctor put me on an antiviral pill for 30 days which I knew wouldn't help a bit. Although the urologist says I only have a mild case, the pain can be so bad that I want to curl up in a ball. It has been a tramautic impact on my life. I feel that I'm depriving my two little ones because I am constantly tellling them "not today, I don't feel well". I can't plan to go places ahead of time and instead have to wait until the day comes to see if I am doing better. My pain seems to shift between the urethra pain to pelvic pain. So far, no prescription pain meds, only OTC which don't help with the pelvic pain. Is there any other type of pain relief from the urethra besides taking pyridium? I would love to hear of success stories with this disease.
08-10-2004, 10:17 AM
Hi and welcome :welcome:
There is a lot of helpful information in the handbook
http://www.ic-network.com/handbook/ . There are many treatments and medicines available its mostly trial and error everyone is different. I would talk to your doctor and see what might be good for you try.
08-10-2004, 10:21 AM
:welcome: :welcome: :welcome: Welcome to our family! I am sorry you have IC and are in so much pain. I know the impact that IC can have on your life is huge.....it like affects everything. I am so sorry.
I think for me my urethra pain is best helped by cold, and things that bring down acid like calcium, baking soda, water, and ant acids.
Here are some ideas for pain relief
C Pain Relief Methods (This list put together by Katrina) Remember I am not a doctor and you should always check with your doc before trying theese.
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 Cold spray water
o In a water bottle
• Drinking almond milk
• Drinking baking soda and water mix (about 1 teaspoon baking soda per glass)
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)
• 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 lemons oranges
o all essential oils
• physical therapy
• Yoga mine see , 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
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 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
• 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)
• 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)
• 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!!!!!
Welcome to our group and feel free to contact me if you need anything.
:grouphug: :grouphug: :grouphug:
08-10-2004, 10:24 AM
Hi there Bunnykinb
welcome to the boards. I can totally empathize with you, I know exactly what you are going through. I felt the same way when I was diagnosed about 6 years ago. Every one is really different and different treatments will work for different people.
For example, elmiron and elavil work for me (to some degree) antihistamines do not. But do follow the IC diet, it will help. Try baking soda and water, this has helped me more with the burning than pyridium or prosed ever has. I also take vicodin in small doses (like a 1/3 of a pill). I dont react well to meds and tend to get a lot of side effects and reactions but unfortunately it's really a matter of trial and error to see what will work best for you.
Try to get yourself a really good doc. That is the best advice I can give you. Someone who will take your pain seriously and not give up on you when you need a treatment or med that is outside their own 'comfort' zone. Sometimes it's just nice to have a doc that'll take the time to talk to you and reassure you you're not crazy or totally losing it.
Hang in there and let us know how you're doing.
08-10-2004, 10:57 AM
:hi: :welcome: I am so sorry that you have been diagnosed with IC. I see that Katrina has already given you her list of things that can help with the pain. Along with it, I would also suggest you spend some time reading what is avalible here on the ICN. Don't try to do it all at once. Take your time. The more you learn about IC the better equipped you will be to become a productive part of your health team. Almost everything I know about IC, I have learned here on ICN.
You will come to find out that there are a lot of helpful and supportive people who post here and will do their best to help you.
As has already been mentioned, look into the IC Diet. Many people here have found that, by watching what they eat and drink, they can reduce their pain.
I am one who has found help taking Elavil. I take 25mg at bedtime and have done so for over 2 years. It has reduced the pain of IC for me so much so that I live a pretty normal life with only an occasional flare. Even when I do experience a flare, it is nothing like I did before Elavil.
There is life with IC...:)
08-10-2004, 11:14 AM
First of all, I'd like to welcome you to the IC Network family. You'll find a lot of information and support here.
My IC was diagnosed almost 30 years ago --- and if there's any one thing I can share it is that there is life with IC. It may take time to find which treatment options work best for you and which foods and drinks are a problem, but most of us do.
Only a very tiny percentage of IC patients get worse. Most of us have occasional flares, especially if we eat or drink a trigger food, but most of us feel good the majority of the time.
I do suggest you review the information in the Patient Handbook. You'll find it a big help in learning about IC.
Sending gentle hugs,
08-10-2004, 11:51 AM
Welcome to the board bunnykinb :hi:
For urethra buring: after you urinate rinse with cool or cold spring water than pat (not rub) dry. It helps
btw, thanks Katrina for all that info. I'm saving it : )
08-10-2004, 12:04 PM
Looks like these ladies has already got you cover here with some great advice so i will just add my :welcome: to you at this time.
remember we are here for you and we do care.
sending you hugs and prayers
08-10-2004, 02:41 PM
Just wanted to add my :welcome: to the others!! Looks like you got some great advice already, so I'm just going to send you some big hugs :grouphug:
08-10-2004, 11:53 PM
I'm glad you came over here. I have a different log in name here (childhood nickname). You'll find a lot of help and support here. Read everything!!
08-11-2004, 01:04 AM
Welcome to you! I am newly diagnosed and have have found so much help and support here. It has been my life for 2 weeks. The vicodin, an lice bag between my legs and a warm laptop to read and write with have kept me hopeful. Katrina's list is especially great! Hang in there. Many hugs.
08-11-2004, 01:06 AM
Sorry, I meant ice bag! That made me laugh. I certainly don't need lice on top of IC.
08-11-2004, 03:01 AM
Hi! Welcome and don't give up. It may take a while but hopefully you will find what works best for you. There is no one magic pill we can take unfortunately. The Prelief helps me immensely. I take 3 before eating or drinking anything and that has made life much easier. I've only taken Elmiron for two weeks now so it's too early to tell if it's doing its thing by coating my bladder, but every day I envision the lining getting thicker and thicker. Just try to take it one day at a time and keep in touch with us here. Katy from Virginia
08-13-2004, 06:52 PM
Thank you everyone for your wonderful welcomes :idea: I'm suppose to get my first DMSO treatment in 2 weeks. I'm really nervouse about it since I read someone post (not on this website) that had the solution run on the leg and getting her sock stuck which burned off some skin. Oh my, how awful. I'm going to have to call my doctor about that one before actually having the treatment. Otherwise, I'll have to go on Elmiron.
08-14-2004, 02:15 AM
Hello bunny I do the dmso treatments. I never had that problem about it dripping and it burning my skin?? I had six of them as of right now. I think I recall once it getting on me..but nothing happened. I hope you get a hold of your dr and let me know. that is scary
08-16-2004, 05:29 AM
Your reassurance and experience in DMSO helps me. I was thinking how could something burn your leg if eventually one has to pee pee the solution out? How much solution goes in? And, did you smell like garlic? That's something else I read.
Thanks a bunch.
08-16-2004, 05:51 AM
bunnykinb.....yes I smelt like garlic....it wasn't too bad from my point of view but hubby did say it "boy that is strong" the first time.....I guess he got used to it too.
I chewed gum and always ate before hand because of the change in taste from the garlic smell.
Good luck to you :grouphug:
08-16-2004, 01:39 PM
Welcome to the IC family--sorry you have been diagnosed with it but you will learn that this board is a mental lifesaver. Where are you in California? I am in the High Desert and will be glad to lend support to you. I also have a little one and know exactly how you feel.
08-17-2004, 06:58 AM
I live near West Covina or La Puente area if you are familiar with that. Where is Fort Worth located? I wish I could find someone who lives close by to be able to communicate once in a while. It is so different trying to explain IC to someone who doesn't have it and of course those who don't have IC truly do not know the pain we all go through.
PS I have been having problems with my home internet and will be out of town next week. So please don't feel I don't care if no replies come through quickly.
08-17-2004, 02:29 PM
Fort Irwin is on the I-15 in the desert on the way to Las Vegas. You're only about 2 hours away from me. Would love to chat.
08-25-2004, 03:40 PM
I actually had a mini vacation and had a good time without any IC problems except being a tinkle buddy. We went to Santa Barbara and enjoyed a 2 hour bike ride. I can't believe how good I feel right now. Although, I really feel like having a coke but that's a no no.
How have things been? You are a spouse of the armed services? Is your husband in Kuwait or Iraq?
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