View Full Version : newly diagnosed -- I can't live like this!
11-10-2004, 12:18 PM
I just can't cope with this. The irritation is constant and driving me crazy. I have a 2 1/2 year old to take care of and I'm just trying to keep functioning while I'm just dying inside. I am depressed and having panic attacks.
I think I have pelvic floor dysfunction as well as IC and can't seem to relax those muscles. I have some relief when I do but can't keep them from tensing again. I have a very poor urine stream and always have to force to get it to come out. I am trying not to but it's hard to relax on the toilet because I have a toddler screaming at me all the time.
The first time I got a "bladder infection" that didn't go away was in 1994. It lasted for a month and then went away. Since then I've had frequency and nocturia, but not enough to bother me again until 1996, when I got the "bladder infection" feeling and it lasted for nine months. I went to a horrible sadistic urologist who I know had never even heard of IC. He kept wanting to dilate my urethra, which was horrendously painful. Then he said I probably had a bladder ulcer. He did a cystoscopy (without hydrodistention), and came back and told me I had a small spot which was "nothing for you to be so upset about." Eventually I was told that I was crazy and put on Zoloft. After nine months of this feeling, my symptoms resolved. Eight years passed during which all I had were mild frequency and nocturia, with occasional feelings like my bladder was bothering me that would resolve in a day or two.
Now it's back full-force, and I finally got a competent urologist who diagnosed IC. That was one week ago. I am on Ultracet, Zoloft (from primary care provider because of anxiety and depression), and Ditropan. He gave me some Vistaril awhile back but I can't tell if it helps because it is just like a tranquilizer dart, and if I take it I cannot keep up with my son.
This is all I think about day and night, and I'm not sleeping well -- having lots of pain nightmares. I see the doctor tomorrow.
Somebody help me! When my husband and I were driving to my cystoscopy last week in the rain I found myself realizing I was wishing to just get killed in a car accident right then so I wouldn't have to deal with it anymore.
Is this a flare? How long does a flare normally last? Or is this just the return of a disease that has been in remission for eight years?
The doctor says he wants to start me on Elmiron but says it takes 9 months to start working. Nine months! How can I wait 9 months!?
I am really coping poorly with this.
My 2 1/2 year old is still breastfeeding, so I've been told to wean him, but the worse I feel the harder it is to distract him. That is a huge issue for us as well because that is a bond that we have that my heart just aches to have to break. He is so fussy and wants no one but me. It seems he'd rather ride down on my sinking ship than be taken care of by anyone else for a moment, and that's sapping my sanity as well.
11-10-2004, 12:37 PM
:hi: and :welcome: to the icn boards
really it does sound like you are suffering from a lot of depression flaring with ic isn't helping a bit.
You need to call another Uro that sp. in IC and be treated.
for your ic and depression.
please read www.ic-network.com/handbook
on this website you will find the ic diet with this diet many people have controled there ic systoms and felt better.
you also have to find the right treatment for your self.
NO ic isn't in your head No it cant be cured Yet but Yes it can be treated to where you can live almost a normal life.
You may have to wean your little boy from breast feeding to take the medicine you need to get your ic under control but onces your ic is under control you should start feeling better.
sending you hugs and many prayers
Welcome to the boards! :welcome: You will find lots of support here, plus a world of information and practical advice from people just like you. This is a great caring group of folks.
If you haven't, I'd suggest reading the online handbook and consider getting Doctor Moldwin's book. Online handbook is: http://www.ic-network.com/handbook/ You can get Dr. Moldwin's book here: http://www.icnshop.com/
This does sound like a flair, have you tried the IC diet that is in the online handbook yet? Many of us find that it is very helpful and usually gives some relief in a short period of time. I also use the otc products: Uristat and Prelief. Prelief and Tums are good for reducing the acid in the urine. This can reduce your pain. Do you try heat or cold against the areas that hurt? Some use both, I depend on cold now because it is more effective for me. You should also talk to your doctor again, sounds like you need more effective pain relief. There are just so many different medicines and practical do it yourself kinds of things to try. One or more will come through for you most likely.
The good news is most of us do find relief from pain, at least sufficient to have a pretty normal life. Hopefully, you will too. I hope you feel better very soon!
11-10-2004, 03:57 PM
:welcome: to the IC Network. I'm very sorry you have IC, but glad you found us. You'll find a great deal of information and support here.
I have to agree that weaning your little one is a good idea --- for one thing, many of the medications sometimes given for IC might enter your milk and your baby doesn't need those.
My IC was diagnosed almost thirty years ago. It did take time to find exactly which treatments work best for me and which foods and drinks I need to avoid, but I did get there, as most ICers do, and I feel good most of the time.
You might want to talk to your doctor about trying one of the smooth muscle antispasmodics. When I flare, I take hyoscyamine and it works very well for me. And if you're having a problem urinating, it's not good to strain --- that can make it worse. There are medications that will help relax those muscles so you can urinate without difficulty.
Hang in there. You will have better days.
Warm healing thoughts,
:welcome: When my IC developed I had a one month old and a 3 year old so I know how very stressful that is. :( Hang in there, OK? I thought I might never, ever feel better and tried to figure out how I could go on the rest of my life feeling so miserable.
The good news ---- I feel normal most of the time now 3 years later! I never dreamed I would ever feel this good again. So hang in there ---- you may have some very good times ahead of you. It is WORTH the wait and the PITA of trying different meds and treatments.
Elmiron can take 6-9 months to work, but I've gotta tell you --- I'd have waited 6 years to end up feeling this good. And actually, the Elmiron began to help me at 2 months --- it gradually helped more and more after we added it to the other meds I take.
So don't give up, OK? :kissing: Come here, read as much as you can so you are armed with lots of info about the disease and be proactive so you can beat this thing! :)
11-11-2004, 02:39 AM
It seems everyone has given you a lot of great advice already, so I'm just going to say :welcome: to the ICN! Please don't give up. It takes a lot of us a long time to find the treatment or combination of treatments that makes us feel good, but most of us DO FIND THAT TREATMENT and live normal lives. Keep at your urologist if you don't feel well; there are many things they can do to help relieve the pain.
11-11-2004, 02:52 AM
Oh hon I am so sorry, I can hear your pain and frustration. The good news is you do have IC so now you can get started on treatment. So many of us went for so many years without knowing so I know I was releived when I was told I have IC. Elmiron has helped me and I have been on it since Sept of this year. The Uro first suggested to me to do the elmiron instills instead of just taking the capsuls daily because I guess the instills seem to work faster since it is going right into your baldder. So maybe you could consider that option. Also there are quite a few on these boards that do the self cath so maybe that is an option for you also if you get no relief from just sitting on the toliet. Hang in there...I promise it does get better!
11-11-2004, 05:17 AM
My heart goes out to you Square Mom. I was where you are about 7 months ago, I too began to think that I should just end it all. But don't give up hope! You wrote that you thought you had pelvic floor dysfunction and I found that it was my problem too. I had to do my own reseach and I had to be persistant.
For example, I have been through 2 family docs, 2 ob gyns, 2 urologists, an accupuncturist, and 2 physical therapists in the last ten months but I am finally 95% improved and looking forward to 100% soon! The physical therapists were the only professionals who offered immediate help and quick results. (Both of the urologists I saw were arrogant and uninformed about pelvic floor dysfunction.) Yuk.
I would strongly suggest that you find a physical therapist who specializes in womens health issues, specifically pelvic floor dysfunction.
I hope this will help you as much as it has helped me.
11-11-2004, 06:17 AM
I was just diagnosed a couple of months ago so I'm still a newbie. I'm not a mom so I can only imagine how difficult it would be to have Ic and have to take care of 2 year old. I have been just so sick at times and ready to give up as well but I'm here to tell you that there is hope. The IC diet really helps. The biggest things to give up is Coffee, tea and carbonated beverages. Wine and Beer is a big no no. It took a couple of Months but I'm actually starting to feel better now. My uro told me that it takes 3 months for caffenine to leave your bladder and its been almost 3 months and its getting better. Please Hang in there and know that we are all here for you to talk to. These people are like family to me and have given me so much support and kindness.
Take Care, :welcome:
11-11-2004, 07:02 AM
I have a four year old and yes, it stinks to feel like doo-doo and chase the little critters. If you want some tips or to talk, PM me. I'd be glad to help.
Hugs and :welcome: :grouphug:
11-11-2004, 07:49 AM
IC is a horrible, mean disease. I understand completely how frustrated and sad you are feeling. Please don't give up - the hardest part is the part you've already gone through. Now that you are diagnosed, it's only a matter of time before you find the right treatment or combination of treatments that will help you.
Although Elmiron does take up to 6 months or longer to kick in (although some people do report some relief sooner than that, so don't lose hope), many people find almost immediate relief by being prescribed Elavil, which is a tricyclic antidepressant that, at very low doses (too low to be antidepressant) works to block pain signals from the bladder.
Perhaps your doctor would be willing to let you try Elavil and Atarax (they might make you sleepy so you might want to take them in the evenings) to see if that combination could help you be more comfortable now, while you are waiting for the Elmiron to work?
Please don't give up hope - you are closer than ever to feeling like yourself again.
11-11-2004, 08:00 AM
omg, I can relate to them dialating your urethra and then the cystocopy..I had both of those done and basicly was told the same thing...it's in my head...nothing is wrong with me. I was told I just had a narrow urethra. I know how frustrated you feel. I'm in the early stages and new here myself. The people here seem to be caring and understanding...together...we can all learn to cope with IC.
So sorry you are feeling so terrible. I can understand where you are comming from. My children are older (7 and 11) but it is hard to take care of someone else when you feel so rotten. I also have PFD along with my IC and have started therapy along with my instillations and would highly recommend it. It has helped already and it's only been four weeks.
:headbang: What is with those doctors who think that urethral dialations are still the answer to IC? I narrowly escaped the same fate. I had a doctor who insisted that it was necessary, so I believed him, made two consecutive appointments, got to his office and something in my guts told me not to go through with it. I decided to to get a second opinion and I am so glad that I did! :woohoo:
I'm glad you finally found someone you can trust, it is so important. Do ask about the elavil and atarax as others had suggested. The two of those drugs have been a life saver in helping me sleep at night. It's a lot easier to deal with everything life throws at you with a good nights sleep!
Good luck! Hang in there!
:grouphug: Jen G
11-11-2004, 01:38 PM
See if your doctor will prescribe Elavil. Has the highest benefit rate of any drug typically used for IC, about 90%. It will help you sleep and decrease the pain. Be prepared for 3-4 drowsy days, but it was worth it for me. I've also been on Elmiron and Vistaril for 2.5 months. I'm gradually getting better. I was very frightened and wondering if it was worth going on. I'm also taking Zoloft for same reasons you are. Most people get better. Take the attitude that if there is something that will help, I'm going to keep looking 'till I find it. I went through 3 urologist before I got corrrect diagnosis and treatment.
Elavil was like a miracle to me. Ditropan wasn't doing anything. I was peeing every 10 minutes all day & all night for weeks before a doctor gave me 10mg of Elavil. The first night I slept 4 hours straight & I was so grateful I cried. After a week I was sleeping through the night with only 1 or 2 wakeups to void. Increasing it to 20mg reduced my pain & frequency further... It has taken a combination of several meds & instills to get my IC under control, but I really remember that the first things to really help were the diet in the Patient Handbook section of this website and Elavil (you can read about it in the Patient Handbook also.)
Sending a hug & wishing you better days soon!
Those words are a trigger in themselves where I am concerned. One thing I am relatively sure of is that my uro is/was mistaken when he first said the problem lay with my urethra itself. He said the urethra was narrowed to the size of a ten year olds, just at the exit. He thought it could cause a backwash effect and that had caused the stress that resulted in IC . Well..... First, from what I have read, the size of the urethra is not a cause nor an effect of IC and dilating it does nothing. Besides being being really painful, as I well know. :cussing: I mean, I am 60, I have had my urethra all my life... Logic tells me that if it were the cause, I would have shown problems a long time ago...... Instead, I have only had problems for the last year and a half.
So, they should start looking somewhere else for the cause! I hate to think of others going through what I went through for months as they used brute force to enlarge mine.
/rant off Thanks for listening!!
11-12-2004, 01:03 PM
I am sorry you are suffering so much and have the difficulty of a todler as well.
IC Pain Relief Methods (This list put together by Katrina) http://www.ic-network.com/forum/showthread.php?s=&postid=54372#post54372
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
• Alka Seltzer Gold
• Resting/relaxing (some goes as far as to say laying down….at times I could only lay on my side)
• Acupuncture (Check page 4)
• 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
• reflexology (see page 5,6)
• physical therapy
• Yoga mine see page 7, 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!!!!!
11-12-2004, 03:43 PM
:welcome: to the ICN family. You'll find excellent resources here and lots of love and support. You've already been given alot of advice so I'm just saying hi and hope tomorrow is a better day for you. I have alot of the same problems you do and it's tough but as time goes by and you learn to accept this it will ease all the tensions you're feeling. It's because it's new and overwhelming. Ask for support from family members or a babysitter so you can get some much needed rest. Reach out for support here, there are so many great people and before too long you'll meet close friends that you can call or chat online with. It all helps. My best advice is buy the Interstitial Cystitis Survivial Guide - it's a great book to read and it answers many questions newly diagnosed IC-ers have. It's a good investment. It's in the ICN shop, local libraries or you can do what i did and buy it on amazon.com in the used book section for 1/2 the price.
Remember each day is a new start, a fresh start and maybe tomorrow will be a little less difficult that today. :angel: Sending you a cyber angel to watch over you thru your difficult day today and :grouphug: a group hug to make you feel safe!
Much love and concern
11-19-2004, 07:34 AM
Your story sounds a lot like mine. I went misdiagnosed for years.
I am also fighting depression again, which has been a problem for me in the past. I was put on antidepressants for "postpartum" 10 years ago and haven't had a problem until my diagnosis of IC. Now I cry constantly and can't believe this is happening to me.
The pain is awful and feels like it will never stop. I had 3 good days in a row this week and am back to "square 1" again today. I came home early from work and cried myself to sleep on the couch. I hope this gets better soon. It affedts your whole family.
Good luck and best wishes to you.
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