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  • What do I do?

    I am only 31 years old and I found out that I have IC after already having a hysterectomy. I also have IBS. I am a manager at a pharmaceutical company which is a very stressful job and when I get home I do not have alot of support. My daughter, who is 13, has a very busy life. She is on dance team at her school and alot of days I have no time to rest. I get up at 4:30 am and drive 45 minutes to work. I work from 6am to 3pm. I then get off, drive another 45 minutes and either go to a game at the school, which usually lasts until about 7pm or I just pick her up, do any running that I need to do, and then I go home. Now, I also have to do "bladder coctails" 3x a week. My boyfriend, of 12 years, is having a very hard time dealing with my sickness. He is a 30 year old man and I know that he has needs that I can not meet alot of times. I stay very depressed and I cry alot. I could not even take my daughter to the mall last week because I felt pretty bad. Alot of times I go to sleep when I get home from work because I am exausted from dealing with my job and the pain, then my boyfriend gets mad because he feels as if I do not want to spend time with him. I do not mean to fall asleep but it seems like I can not help it at times. I have lost alot of weight because I am scared to eat due to the IC and IBS. It seems like I can eat certain things sometimes and I am OK with it and then when I eat the same thing later I get sick. I love my daughter and my boyfriend very much and I feel as if this diesaes is making my loose both of them. Has anyone delt with anything like this because I feel like I am loosing my entire life. PLEASE HELP!!

  • #2
    You're story is familiar with most IC patients who have families, jobs, social lives, etc to contend with. Unfortunately I dont have anything to offer you that will help other than we here can empathize and sympathize with you and your situation.
    Hopefully by you finding this site, and seeing that you're not the only one suffering will help you out mentally at the least. Finding out that one has IC can be extremely overwhelming at first, however with time you'll hopefully be able to restore some sort of normalcy to your life.

    Hang in there, dear.....
    Diana
    (\__/)
    (o.O )
    (> < ) This is Bunny. He's on his way to world domination.

    Comment


    • #3
      I AM SORRY TO HEAR WHAT YOU ARE GOING THROUGH BUT THERE IS HELP
      PLEASE SEE A PAIN MGMT DOCTOR. THAT IS WHAT HELPED ME. I TOOK NEURONTIN, PERCOCET, ZANAFLEX, ELMIRON AND TENS UNIT AND 12 DMSO TREATMENTS

      ALL OF THIS COMBINED PUT MY I.C. IN REMISSION FOR A YEAR.

      I HOPE THIS HELPS


      MARY
      NEW YORK YANKEES ROCK THE HOUSE. 26 WORLD SERIES CHAMPIONSHIPS, THE MOST EVER\

      GO YANKEES
      :woohoo: :woohoo:

      Comment


      • #4
        Just want to add my to the ICN. Sorry you are having such a rough go of it. We definately understand. I do agree with Portia that a pain mgmt Dr. could be your new best friend. Pain is very exhausting by itself, especially if left untreated. Please ask your Dr. for a referral to a pain clinic.

        Also, I think it is time to get a physcial to rule out other things as well. There may be something else going on with you, like Chronic Fatigue syndrome or another illness that causes the extreme fatigue. There are meds now that can help with the exhaustion. It is important to get a good work-up to see what is going on. Obviously, your Dr. is not understanding that this has become such a big problem. Make sure he/she knows how much this is affecting your quality of life and relationships.

        I hope you get the help you need very soon and can get to the root of the problem and find a med or treatment to help get you feeling better.

        Hugs,
        Amy

        Comment


        • #5
          Make sure you check out the ICN's online patient handbook:

          www.ic-network.com/handbook

          It has lots of information about treatment, self-help tips, coping tips, sex tips, etc. Pretty much has everything you need to know about IC. It is wonderful.

          Glad you found us - having the support of other people who understand is invaluable and can make such a tremendous difference in how you feel.
          Kim

          Diagnosed August 2001

          Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


          Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

          I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

          *****************************

          “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

          “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

          Comment


          • #6
            You've gotten a lot of great advice already, so I'll you to the ICN...

            I also know what you are going through; I have IC, IBS, fibromyalgia.. the list goes on. However, I'm a research scientist at a large medical school, and that requires long hours and causes a lot of stress. It's really hard to stay awake when I get home, especially since my meds can make me tired too. I guess fortunately, my husband also works as a research scientist, so he's just as stressed and busy. We try to make time for each other though -- because of my illnesses, I often don't work as long as my boss would like, but I just can't. So, I come home, try to rest, and then hubby and I spend the evening together.

            As for sex, yeah, it's hard, but if you check out our Romance and Sex board (scroll down the list until you see it) there are a lot of good tips there for making it more comfortable with IC. My hubby and I use them... and sometimes, when I just can't, it is a "Guys Only" night and we do other things You can also check out our new message board devoted entirely to sexual issues -- http://www.whensexhurts.com -- you'll have to register to see the board, but it's worth it for sure!
            ****
            Jen

            *Diagnosed with severe IC in 2004
            *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
            *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
            *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

            **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

            Comment


            • #7
              &quot;When sex hurts&quot; website a Godsend

              I remember when I first was diagnosed, I cried in my Dr's office for an hour. And then I cried for several more at home. I felt my dream of going through the nursing program was over. But since I have taken measures to learn all I can, I feel stronger and have the will to NOT let IC take over my life but to make it move aside. I will forever have to coexist with IC but it will not take over my family, or my dreams of being an RN. One day when I am a nurse, I will beable to truly comprehend my patients' pain and have even more compassion and gentleness than ever I could have before IC.
              Jen is right. Do go to the website "When sex hurts" because it was so helpful. Prior to me perusing the site, my husband and I hadn't attempted sex since 12/13/06. I took all the information and advice and did exactly what was suggested. We have now had sex twice in the last two weeks with no flare following it (just a little vulva discomfort that got better with a hot bath,ice after and an Aleve tablet). Needless to say, he was incredibly gentle and slow. It really lifted my spirits to feel "normal" again.
              My motto is learn ALL you can. Knowledge is power, but make sure you stay within the parameters of this website and the info your dr gives you. Being so newly diagnosed I was mislead by a book written by a Dr. who turns out was highly controversial. Won't make that mistake again!
              Take good care of yourself and know that there are so many of us that care and truly empathize with you. You will make it!
              Peace
              Danica
              Peace
              Danica


              Stopped taking Elmiron for the time being-- could not tolerate side effects

              ADARAX 25mg at night and at times morning
              Calcium mag citrate w/ vit.D
              Prelief 8 to 10 a day
              Cystoprotek 4 a day
              MSM

              ~God's mercy and grace are infinite~

              Comment


              • #8
                Thank You

                I want to thank all of you for listening and being so supportive! I read alot of your stories and actually had a talk with my boyfiend in more detail than I usually do. I think that it may have helped some! I am hoping that one day they will find a cure! I have my fingers crossed! I will keep all of you in my thoughts and prayers! Thank You So Much!!

                Comment


                • #9
                  Hi and welcome ... I only have a few minutes to write now, but here are some things that I have learned. I was a VP, Technology with a pharma company when I got IC. I've had IC for 16 years.

                  > Check your disability coverage. If you haven't signed up for the max level of coverage, do so at the next opportunity. Consider getting your own policy not tied to your company. This will allow you to change jobs if that becomes necessary. If you pay for your coverage with after tax dollars, benefits are tax free if you ever have to use the policy.
                  > If you own your own home, check into mortgage insurance and read the fine print.

                  > As others have indicated, become familiar with the IC diet. There are plenty of healthy plain meals that can be made. Stabilize your strength and weight with a good diet.
                  > Your schedule (4:30 AM?) sounds pretty difficult, you might want to adjust it to make sure you are getting more rest. Rest can help you better deal with your IC symptoms.
                  > There are some threads on this forum about lowering stress in stressful jobs ... they are worth reading. My advice would be to consider going to a physical therapist that can teach you a program that will allow you to stretch your pelvic muscles and release the tension that builds up in them.

                  > Your daughter will be fine. Don't worry about small things like trips to the mall.
                  > Your boyfriend needs to understand that you are sick. The two of you will have to make adjustments. Many tips on this site.

                  In general, IC patients tend to find coping skills/treatments over time that can help them do many of the things that IC initially takes away. This process can take some time (a few years), but becoming familiar with the info on this site can shorten that process. Good luck.
                  Bill

                  Comment


                  • #10
                    By the way, your username is AWESOME! That's a great attitude to have and one I developed early on. I remember my doctor once saying, "Well, we'll schedule you for a year from now, but you'll probably need to come in sooner." He had added Elmiron to my med regimen shortly before that and I remember thinking, "HA! I betcha I won't be back before a year!" And I wasn't.
                    Kim

                    Diagnosed August 2001

                    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                    *****************************

                    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                    Comment

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