Finally diagnosed

[wendylou]

Hi everyone,
I am new to this but am so happy to know there are others who know what I have been going through. I was finally diagnosed after 4 gynocologists and 5 urologists. One uro told me I counldn't have IC because I didn't jump off the table in pain during his exam. I had the cystoscopy with hydrodistention a couple of weeks ago and it was confirmed that it is IC. I have the Hunner's ulcers and stuff. I thought I would feel better after the procedure but I have been so much worse. I spend the entire night in the bathroom and that is with pain meds. It is really frustrating and affecting my marriage and my life in general. If anyone has any suggestions that help, especially at night, I would be grateful. Wendy

[Dixiefireball]

:hi: and :welcome: to the ICN family please take some time to check out www.ic-network.com/handbook you will find it very useful.
also you can find the IC diet there which is also very helpful in a treatment plan for IC.
I find that with bladder spasm (what it sounds like your having to me) a heating pad helps if heat doesnt work try an ice pack.
you may even picked up a UTI. during your surgery. so that is something else to be checked and make sure that isn't the problem causeing you ex. pain.
it could also be some type of drink or food you may have ate causing this pain try some prelief or tums some even says one tsp of baking soda to an eight oz glass of water helps.
and drink and drink lots and lots of water to flush your system out.
We are glad to have you here please let us know if there is anything we can do for you.

[Sarojini]

:welcome: to the ICN! Dixie's right... check out the patient handbook! It's full of great information and tips for dealing with your symptoms. :)

I'm sorry you've gone through so much recently, but hopefully, now that you know what's wrong you can get some appropriate treatments. Most IC patients feel LOTS better once they are on the right meds... it make take some trial and error for you to find what "right" is for you, since everyone's different, but you WILL find it with time.

Good luck, and keep posting. You found a great place... full of love and support :)

[tommygal]

Welcome to the group! I am in the exact same position as you right now, so thought I would let you know your not alone! When were you diagnosed? I was just 10 days ago, but have been sick for years. I am also in a lot of pain after my surgery, but I think I have discovered what is causing it. Are you on the diet? If not I suggest to try it out! I have been on the diet a few weeks now, and so couldn't figure out what was causing the pain, and was checked for an infection and didn't have one. But I suggest also trying to see if you have an infection! I keep track of the foods I eat everyday, and was looking at it to try and figure out what is causing my pain, I am eating a few things on the IC diet maybe list and I believe honeydew was causing my flares. So maybe you can also try and figure out if there are some foods you are eating that could be causing the pain. Go to the patient handbook and look at the diet, if you haven't already. Good luck!! Let me know if you figure out whats wrong!! And remember your not alone! And I second the suggestions the other girl gave you, try those too! Hope you get some relief soon!

[Katrina]

:welcome::welcome::welcome::welcome::welcome:
Sorry you have IC, but glad you have us!! I am sorry the hydro cysto made you worse...sometimes it does.
:kiss::kiss:
This is my pain relief ideas.....sorry so long.
IC 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 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
• 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
• 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
• 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 with 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!!!!!

[vm]

Welcome! :welcome: I think you will be very happy you found these boards. They have been a great source of comfort and information for so many of us. :)

[ICNDonna]

I'd just like to add another :welcome: to the IC Network.

You have had a surgical procedure and it takes a while for recovery. It's a good idea to be checked for infection, however, since it's not unusual to develop a UTI following any bladder procedure.

The diet can be extremely important. Many medical professionals are still urging IC patients to drink cranberry juice, which is probably the worst possible thing for IC.

My IC was diagnosed almost 30 years ago and I'd like to assure you that there is life with IC. It may take a while to find exactly which treatment options work best for you and which foods and drinks you need to avoid, but most of us do get there.

Sending warm healing thoughts,
Donna

[wendylou]

Thank you all so much for letting me know your ideas. I am headed to Mass General today for post op and will go with all these :lmao: ideas. Today I am feeling a bit better but still too tired. If you can't sleep, how do you give up coffee? Wendy

[SharonA]

:hi: :welcome: Glad you found us. This is a great place to find helpful and supportive people who know and understand what you are going through.

It is also a great place to do research about IC and its treatments. Check out all the info available here. :)

[lindy lou]

I am a newbie also. I was in considerable pain for about 2 weeks after the cys/thydo, much worse than before. It has only been the last couple of days since I started the Elavil that I have noticed an improvement. Hang in there and listen to all the experience speaking here. Read, read and post your questions here. This has been my life saver since my dx 3 weeks ago.

Linda

[Iris]

Hi and wanted to add my welcome to the ICN, you have found a great home to come to, with support and compassion, and many gals to help you deal with IC, on the bad days, as well as the good ones. It takes a while to get over surgery, I know it took me quite a while, and also to find the right meds to help you deal with the pain. There is a light at the end of the tunnel, and the gals have given you some great advice, and Katrina's list of things to help is a wonderful tool to help you out. Once again welcome, and keep us posted as to how you are doing, welcome hugs Iris. :hi: :welcome: :grouphug: :flower:

[donutgirl]

Welcome Wendy,

I was dx the end of May and have found that the only think basically I can drink is bottled water. I was a huge fan of iced tea. I went to decaf tea the first day I read about the IC diet, but didn't notice any improvement until I changed to totally water. My dr. asked me to go to the bottled water. Look at the diet and read and post, etc. as the others have "said" and you will eventually begin to learn some things that trigger problems.

DIANE