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  • How many people are as limited as this?:

    This is getting horrifically frustrating.

    I hear so many people on here who are able to do a lot more than me...I'm wondering what is going on and if anyone was like this and got better...I know Kathy in Canada has worked hard and gotten improvement ..anyone else?

    My limitations:

    Can only sit long enough to put shoes on.
    Must recline while eating.
    On a good day can tolerate very slow walking for 15 min. w/out causing major pain.
    Bad day (most of them) can barely get around home w/ only small steps.
    Needing Tramadol daily.
    Much of day must lie on side to prevent more pain and usually only on left side. (this has strained my hip/back to where I'm waking up in pain from it during night).
    Going out anywhere causes need for increased pain meds for 2 days, that's even to the doctor. When pain is bad when I dont go out I can't even think of worsening it by going somewhere.
    Standing can only be done for about 10-15 minutes if moving around, can't do that every day.

    I wasn't this bad when it started on Dec. 31 but had a D & C and hydro on Jan 31 and then sitting became a problem and since then standing and walking and more bad days than good and essentially getting worse all the time. I don't know if there is a relationship or not, though pain since then has felt like pelvic floor.

    Has anyone been like this and gotten improvement? If so, how? Thanks a lot. I'm just trying to figure out what to do and what to expect in terms of improvement from this point. I'll see a new uro on the 30th.

  • #2
    Sorry Holly you are feeling so bad. I hope your new Uro. can help you more so you can have better days.

    Sending hugs, Trishann


    • #3
      I was definitely not as limited as you are, but I had everyday pain and was going to the bathroom 30+ times per day. All last summer the pain was really awful. I was able to work out at the gym first thing in the morning, and that seemed to help with my pain, especially as I drank a lot of water during my workout. However, by evening I was using my bed buddy, and taking Urised or Pyridium almost on a daily basis. Hot baths, portable heat (thermacare stick-ons or Bed Buddy) and the Urised or Pyridium generally allowed me to function for the most part, though I remember coming home from some outings in so much pain all I could do was cry and try not scream and scare my poor three year old! He talks about bladders all the time as it is :-)

      I started taking Elavil on October 16th and the difference has been amazing. I really thank Elavil for giving me my life back. I take 75 mg at night and I do sleep a little more than I used to, but it's well worth it to me if I'm able to function during my waking hours! It took about three months to feel the full effects. I still have brief flares if I am not careful on the diet or don't drink enough water, but they generally last just a few days. Many days I don't even think about my bladder, except that I have to take my pills! I'm also on Loestrin 24FE (BCP) which has really helped my period-related IC symptoms (that was the time of the month that I could not do anything at all).

      Has your doctor started you on medication? Does it help you to apply heat or cold (for me they worked on different types of pain, some people prefer one over the other in general)? Do the bladder analgesics like Pyridium or Urised help at all?

      It definitely sounds like you need to get in to see your doctor ASAP, especially if you haven't started any IC treatment yet. There are a lot of options out there to try, and it does sound like you may have some pelvic floor dysfunction, too (I've read that the majority of IC patients do). Unfortunately, there's no one "cure", but many people have seen tremendous improvement. I'm sure others will weigh in with their experiences as well. I know that my pain was not nearly as bad as yours, but I wanted to share my story so you could see that real improvement is possible. Last summer I would not have believed that I'd ever go a whole day without thinking about my bladder1

      I am hoping you start feeling better very soon!


      • #4
        Yes, people do get better! I did

        Yes, I was very sick when I first got IC.
        Here's what it was like for me: constant knifelike pain in my lower abdomen, having to void 60+ times a day, unable to sleep longer than 20 min at a time due to frequency, nausea from pain (lost 12 pounds in 2 weeks), could not drive, could not wear pants, could not walk more than a few minutes. Very very sick.

        The first medicine that helped me was Elavil. Even the lowest dose of 10mg made a huge difference. The first night I took it, I slept 4 hours straight & cried because I was so grateful. Within a month on it, I was down to voiding only 20x a day (compared to 60). When I increased to 20mg, my frequency went down to 12x a day.

        Following the IC diet reduced my symptoms by more than half, so it is definitely worth trying. I started out eating only foods in the left hand column, then gradually added middle column foods one at a time. Definitely learn to read labels: eliminating caffeine, acidic foods, preservatives (citric, sorbic acid, sulfites) can really help too! Here's a link to the diet:

        I also tried Atarax & Elmiron. Those did not work for me, but they help a lot of IC patients, so they are worth trying.

        I tried DMSO instillations, but had more success with heparin home instillations so that's what I do now.

        Pelvic floor physical therapy helped me a lot as well.

        This is how things are today: I work fulltime easily 95% of the time. I wear pants & jeans. I can drive without pain. One thing that helps with driving or riding in a car is to keep a thick scarf in the car & to put that like padding between the seat belt & my abdomen. I can work out at the gym, do yoga & hike (today I walked 5 miles, slowly, but I did it!). I can travel modestly. I use the restroom 8-10x a day & sleep through most nights with only 1-2 wakeups for the bathroom.

        Hang in there, it is possible to be very very sick & get better! It takes awhile to find your dietary triggers & to test out different medicines, but it's worth working through

        I am not a medical authority nor do I offer medical advice. In all cases, 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.

        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
        Source - Pinterest

        Current treatments:
        -IC diet
        -Elavil 50mg at night
        -Continuous use birth control pills (4-5 periods/year)
        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
        -Pyridium if needed,
        -Pain medicine at bedtime daily, as needed during the day several times per week
        -Antibiotic when doing an instillation to prevent UTI
        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
        -Dye Free Benadryl 50 mg at bedtime
        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
        -Managing stress= VERY important!
        -Fur therapy: Hugging the cat!


        • #5

          Just wanted to say that I hope you start feeling better very soon!

          (o.O )
          (> < ) This is Bunny. He's on his way to world domination.


          • #6
            Holly -- I have been where you are now, for about the past six months (and before that I was functioning, barely, by sheer force of will). In the past three or four weeks, I have begun to have substantial improvement. We made some changes in my meds, began at-home heparin/lidocaine instillations, and I got more serious about the diet. I had been very resistant to giving up coffee altogether, but when I finally did that I think it helped. I also started elavil and cystaQ, cut down my neurontin dosage, and changed from one pain medication to another. This helped with frequency and energy (like, I had a little). Now I have had four pain-free days in a row (with meds). I am almost afraid to have too much hope, but I feel good and I'm getting out to walk most days. I am doing a small amount of housework (unloading dishwasher, folding laundry, easy things like that). I am very weak from six months in bed, but I try to walk a little more each day.

            I hope you will speak to your doctor about treatment options because there are many combinations. Each person responds differently due to individual body chemistry. I am fortunate to have a uro/gyn who is willing to keep thinking, keep trying different combinations, and a pain-management doctor who is very understanding. I wish the same for you.

            I don't know if this cheers you up or not, but I hope so.
            Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
            Wishing you happiness and good health, and all the best out of life.

            Peace, Carolyn

            Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

            On the Beach with IC


            • #7
              Hi Holly, Your symptoms sound alot like mine. Everything you describe pretty much describes what I've been feeling; worsening over the last year or so.

              I was dx'd with IC in December 05, but even then I would explain to my Uro that I could not sit. She would say "that's not a symptom of IC", much to my dismay. Then she worked on the pelvic floor dysfunction dx, which I do have also. After continuing worsening I grew frustrated w/ my Uro's inability to help me. I've been through many, many treatments and nothing has really helped much at all (see my sig).

              I continued seeing my GP who after alot of research believed that I have Pudendal Nerve Entrapment or Neuralgia. My GP dropped me, and I have no insurance and no income, so at this time I am unable to confirm that dx (which is not easily confirmed from what I understand....there are only a few docs in this country that actually treat it).

              You might find it helpful to look at some of the posts under the "Complex Cases" part of the forum. There are other members here who have gotten the PNE dx. You can also search the boards for Pudendal Nerve Entrapment, I do see it mentioned every once in a while. My IC was not as severe as the girls have mentioned here, I have pain and I urinate approx 20 - 25 times per day, though sometimes suffer from retention requiring self-cathing. I think think (the PNE) has been a HUGE part of my continuing debilitation. I don't mean to scare you at all, but to inform you.....your symptoms are JUST like mine! I have to lay on the bed to use the computer even! I've done alot of research on the subject, and I think it has something to do with the nerves being irritated from the irritated IC bladder....just my own theory.

              There are also other support boards on the internet that can offer some information and suggestions. If you google "Pudendal Nerve Entrapment", you will find them.

              I do hope that you get some relief soon! ~ Chris
              Thank You all so much to everyone here for all your sharing, caring and support!
              < My "Bear"
              Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
              IC Diet
              Hydroxyzine 50 or 100mg at night (Is restarted)
              Zoloft 100mg 4/8/07 (Is restarted)
              Klonopin 1/2 mg 4 X Day (started 3/17/07)
              Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)

              Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
              Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention

              My Myspace page -


              • #8
                Thanks everyone for your input and wishes and encouragement.

                I've been on the diet for a couple of months now and I've been very strict w/ it. Part of the problem is waiting to get into the uro. I saw one who tried to blame the whole thing on my uterine fibroid and didn't want to see me again until I had it removed and wanted to know why I didn't want a hysterectomy (roll eyes).

                I know enough about fibroids to know that wasn't the cause but got my hopes up anyway...finally got into see the gyn who said, there is no way this is from fibroids and if I operate on you, you will be worse. The uro that several people on this board recommended to me I've been waiting months to see. I'll see her on the 30th.

                Elavil causes me major retention at as low a dose as 5mg. and w/ the pelvic floor stuff I'm terrified to try that. I already had that with Vesicare which is probably partially why I'm so bad off pelvic floor wise.

                I am terrified of Elmiron because of the toxicity of that drug and 4-6 months just to see if it works for you is horrible. I know it really helps some people so I have to weigh that up.

                I use heat and ice, the heat isn't working for me as well as it did, I use ice when I've taken all the tramadol I can take and am still in agony just to numb everything. All my pain is between my legs.

                Meanwhile I'm taking my Trazodone at night along w/ my klonopin, I've been on MSM for several weeks, I was already on glucosamine, I've recently added citrus free quercetin. I take at least one bath a day, try to take 2, can't stay in that long anymore because of the hardness of the tub, even reclining. I'm afraid to start the PT until I get valium 3x a day and better pain management.

                So I guess I'm just getting started, it's just that the drugs for this scare the h*** out of me. I feel afraid that if I start on some of them I'll only develop more diseases from the side effects and just go on a downward slide. This disease is enough thank you!

                Chris, I'm from the US but I live in Australia now. I hate the medical system in the US because when you're broke you're really in a bad place waiting out getting disability and medicare. I'm so sorry for the place you're in. I hope you can get on disability. I havent tried all the things you've tried yet. I'm so sorry for your situation, I really hope you get help soon.

                I guess I'm hoping this new uro has some good ideas for me that I can bear trying. I'm so afraid of being made worse. I think the simple D & C and maybe the hydro (all done at once, one month after symptoms started may have made me worse, only benefit from hydro is that I can tolerate bladder filling but I used to be able to sit and walk and stand before those procedures and after the disease started). Thanks for letting me vent.