No announcement yet.

6 months of Flare? (really long post)

  • Time
  • Show
Clear All
new posts

  • 6 months of Flare? (really long post)

    I haven't gotten better. Some days are a bit better than others, but I am still in a massive amount of pain every single day. I am not sure that the instillations helped much, maybe for a few hours, but not complete pain relief, and the catheter always leaves me a little bit irritated and uncomfortable. I am doing my best on the diet, but it is a struggle for me because I have some food allergies that limit me especially on protein sources. (eggs, milk, beef, passion fruit, artificial sweeteners, strawberry flavoring, and I generally don't eat poultry, but I might try it again now that I am trying to eliminate soy). My real question is, can a flare last this long? When I was diagnosed with IBS I had diarrhea and pain every day for an entire Summer, I had to spend 8-10 months on an elimination diet, which is why I don't eat the above foods. I am worried that it will be a year or more in the future before I have a pain-free day. I am taking everything exactly like the doctors prescribe, but I don't think that they have any sense of urgency in treating me. I am seeing a new uro tomorrow, I think that I am going to ask him for a specific action plan focusing especially on reducing my pain levels. I haven't been to work in a week because I had to keep leaving after working just a few hours because the pain gets so bad, and then if I take a pain pill, I need to go home and rest. My current uro doesn't want to prescribe a daily pain med, so I have a few from ER visits, and clinic visits, but I am scared at how bad it will be when I run out completely, I usually only take them when I just can't stand it anymore, usually at bedtime, but sometimes during the day too. I am really hoping to get better results with the new uro, but I am nervous that I will have to keep looking and I am afraid of being accused of "doctor shopping." I guess I just have a lot of anxiety about pain, which probably doesn't help me.
    Also, does anyone else get extreme pain from even slight bending at the waist? (ie picking something up off the floor, or kissing a kid on the head?) Or extreme pain when someone hugs you around the middle?
    I hate riding in the car, I cry out at every bump, and my husband thinks I am scared, and brakes quickly...
    Is it normal w/ ic to have swelling in hands and feet?
    Do pain meds or IC meds make it harder to start the urine stream?
    Do meds for headache make IC worse, like Ibuprofen and Tylenol? Does anyone else find themselves taking a nap almost every single day, or sleeping on an altered schedule?
    Does anyone else who uses a tens machine find that it makes your skin very sensitive?
    Sometimes it is hard for me to decide if its the IC or something else. The muscle spasms in my neck aren't healing as fast this time, and I wonder if its harder to heal when you have a condition like this...
    Sorry for the long post, I think I am thinking too much. Thanks for reading, and any responses.
    My current meds:
    Elmiron 200 2X daily (only taking 100 2X b/c of shortage)
    Phenergan 25 2X daily (and sometimes mid-day with pain meds)
    Zoloft 50 mgs morning.
    Norco/lortab for pain (only 3 left)
    Utira-C 4X daily (only a few left)
    Atarax w/ pain meds (for the itching they cause)
    Elavil 75 mgs at night
    flexaril (as needed, but I am avoiding it b/c it might be making my bladder worse)
    Xopenex inhaler prn
    Nasonex 2x daily

  • #2
    Hi there!

    I am sorry that you are suffering with pain. It is not easy but I do believe things do eventually go up hill. The pain is what is not fun... chronic pain. Just keep trying different treatments. One suggestion - never start two new meds at the same time - because you will never know which one is working or not. I am trying a new medication right now and then I will try the other new one in a few weeks. That's just a suggestion (something I've learned since December 2009 - the year I was diagnosed.

    Here are some answers to your questions...

    I take tylenol - it's doesn't help me with my bladder pain but it doesn't make it worse. I'm allergic to ibuprofen. However, tylenol 3s - the tylenol with codeine makes my bladder flare. However, every one is different.

    Yes, I think it is normal to want to nap especially if you are in a huge flare and going back and forth to the washroom nighttime. At my worse it was 20 - 30 times a night. I was hardly sleeping... it was horrible. So napping I am pretty sure fits because of sleep disruption from pain or frequency.

    Depending on where I am in the menstrual cycle, yes, bending down a little bit can cause me pain that makes me want to fall to my knees in tears... that has happened a few times. When I first was diagnosed the pain was like that all the time... now that I have some of my ic symptoms undercontrol, this is not as bad...

    And yes, bumps are painful... I generally use a cushion... I am 29 and sometimes my friends jokingly call me grandmother because I take my cushion everywhere. Sitting on wooden chairs hurts, driving a car hurts, pews in church hurt... school busses are definitely not my friends.

    I am not familiar with tens machine but there is a section here on the forum that talks about these.

    Okay... know of my prayers for you as you try to figure this all out. Glad your husband is supportive... I am glad you have that on your side and that he is understanding.


    Current Meds:
    1 Elmiron 100mg 3x a day
    1 Cimetidine 300mg 2x a day
    4 Gabapentin 300mg 3x a day (3600mg)
    1 - 2 Atarax 25mg at bedtime
    1 baclofen 10mg 3x a day as needed
    200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
    2 belladonna and opium suppositories as needed for pain daily.
    Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

    I have tried but failed -
    lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .


    • #3
      I'll try to answer some of your questions. Ibuprofen and other NSAIDS are a problem for many ICers. Most of us can take tylenol. Yes, there are some medications that can make it difficult to urinate. If you don't get enough sleep at night, napping during the day is almost a requirement to maintain health.

      Do you eat fish? pork? There are many ways to get enough protein.

      There's a pillow available in the ICN Shop that takes the pressure away from the perineal area and helps a lot with riding in the car. If I'm flaring, it's an essential for me.

      I hope you feel better soon.

      Warm hugs,
      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help:


      Diet list:

      AUA Guidelines:

      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.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4

        Yes, I've had flares lasting 6 months before, sometimes even a bit longer, sometimes as short as 3 months. And my pain seems to differ and move around, sometimes it's excruciating stabbing urethral pains where I can't function until it's over, other times it's like my bladder itself is hurting really bad, if I'm perfectly still I'm okay but the tiniest movement is agonising. I've been in the car with my bf, drove over a speed bump and literally screamed in pain, sitting down on the chair at work after getting up to do something hurts, even something as simple as being asleep in bed and my bf moving my leg to come and get in the bed can wake me up screaming cos the pain is just that bad and every little movement of my body hurts my bladder. Right now I'm awake because I can't sleep due to the pain, I think I have an infection that began monday but none of the antibiotics are working, I'm tolerant to a couple now that I've been having infections every 2-3 weeks this year and it just seems to be getting worse. I think I might be in the danger of losing my job due to sickness, I can't work or concentrate or drive feeling like this and I really struggle to get up after an hour or so's sleep and drive to work and work 9 hours safely. I've done it, but it's hard... I just wanted to show what someone else is going through with this. Hugs.
        Seven years of hell ongoing, chronic bladder and urethral pain with an umbrella diagnosis of 'chronic pelvic pain syndrome'

        Procedures done:

        3 x Cystoscopies (1 with biopsy)/1 x Kidney Ultrasound/1 x Laparoscopy (found old endometriosis)/1 x Pelvic MRI/12 Cystistat Instillations/1 x Nerve Block in my spine (no anaesthesia)/Acupuncture

        Drugs I've had:


        Due to have Sacral Nerve Neuromodulation Therapy in April 2012 (Insterstim Therapy I believe it's called)

        Currently taking:

        600mg Pregabalin, 120mg Duloxetine, 30mcg/hour Buprenorphine through transdermal patches, Laxatives every night and a nightly Trimethoprim antibiotic.


        • #5
          Yeah, I haven't been to work in almost 2 weeks. I can't plan ahead even 5 minutes, because I don't know how I will feel. My doc just gave me Ultram, and it helps some, but not as much as I had hoped.


          • #6
            I've been flaring on and off since last fall, so I know how you guys feel. I'm now on oxybutinin, amitriptiline, and hydroxyzine. I also had a hydro/cysto done back in April. All this stuff has brought short tem relief. Here's something strange; I got a cortizone shot in my foot today due to an injury and it seems to be helping a little with my flare. I will have to mention this to my doc. I'd like to know some of your strategies for coping with long-term flare as I've never dealt with this since being diagnosed.


            • #7
              When I get really sick from a flare or other conditions, my Dr. will rx cortizone pills 50 mgs 3x's per day for 3 day's.

              It always doesn seem to help me feel better some.

              I don't think it is a med you want to take long term if you can help it, but for short term I think it is okay.

              It may just be what you need to help turn the corner of this flare.

              He also rx's it in 10 mgs just depending on how much he wants me to take.

              My are with you all. May you all find a way to peace and joy in your lives.


              • #8
                Thanks for the info. I will be sure to keep that in mind if I start feeling bad. Today I'm feeling pretty good, but not back to normal. I do want to mention to my doc that the cortizone shot I got seems to have helped.


                • #9
                  My family doc is not in this week and the other docs there said to go back to the uro, so no luck there. I don't know if my uro would go for giving me some cortizone tabs or not. I'm just so sick of going to see her all the time for temporary relief. I don't even have a damaged bladder, so I don't want to do DMSO like she wants to do. I'm thinking of going holistic with this.


                  • #10
                    I called my uro and explained what's been going on. I told her I didn't have time for an appt as I'm so busy and I also don't have the time or money to spend on DMSO. She told me to do the baking soda and tums thing every six hours. I did my first dose at 10am and it seems to be helping a little. I am just SO sick of the burning feeling. I do hope this helps.


                    • #11
                      I am still flaring, but at least I got a referral for pain management now. I am waiting for my short-term disability to be approved since I have missed so much work.