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Just Need To Vent Some Frustration!

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  • Just Need To Vent Some Frustration!

    Hi Everyone;

    It has been a bit of a trying few weeks and I wanted to talk to people who understand what I'm going through!

    For the last couple of weeks I have been going through a really bad flare up. Getting up maybe every hour or so throughout the night, lots of pain, burning, constantly feel like I have to go etc. etc. Even walking is painful. Each step I can feel a painful pull on my bladder. It has been driving me crazy!

    And I feel like I'm facing all of this alone. I do see a urologist, but she hasn't been very helpful. As of right now I'm not on any kind of treatment. She recommends that I have a bladder hydrodistension for treatment...but I've been pouring over the research and from what I can see, the hydrodistension usually only offers 4 months relief from symptoms. I'm just not sure if that's worth it!

    I have the hydro booked for July, but I'm still not sure if I'm going to go through with it....I'm thinking I should make another appointment with the uro and go back and see if there's other things I can try...I want something that is going to give me some hope of long term relief...

    So, I've been struggling with a nasty flare and trying to decide about the hydro. And on top of all that I'm a University student and I have to do a professional internship for my degree. Now, in this internship they expect you to work 40-60 hours a week, travel and on and on and on.

    I'm really worried about it. With the IC, I have a bunch of other medical issues, one of which is chronic fatigue syndrome, and I haven't even had a full time job or anything in the last few years. This will be the first time that I'll have to put those kinds of hours in, up to 12-13 hour days!

    I've gone and talked to them about my medical issues...and they're making a few exceptions for me but not a whole lot. Basically, if I want the degree, I have to do it. And I've been in school for 4 years now, I really don't want to lose the degree now!

    They say that everyone has to travel to some extent. When I explained that travel is very hard for me (one of the things that drives my bladder crazy is cars...I have no idea why, the vibrations or something) they agreed to have me only travel for a few weeks.

    But I'm really nervous. I start in a week now, and my first placement, I have to drive an hour and a half out of the city. And I've been looking and there's no place to stop to use a bathroom along the way. Mornings are the worst for me. I really struggle with IC and IBS in the mornings, and I feel like I live in the bathroom! And I have to get up at 5:30am and be on the road pretty much right away to get there....and just the thought of getting through this placement is really stressing me out!!!!

    It doesn't help that I've been stuck in the really bad flare (the worst I've had in quite a while) and it of course is happening right before I start this placement, making me more nervous! (stress anyone ).

    And, to add to the venting, I've been having a truly terrible day of being exhausted and my bladder in agony and my husband wants to get a bunch of things done today. I feel terrible. I tried to go out grocery shopping this morning, but every step was causing me pain and I ended up having to turn around and go right back to the bathroom...

    He really tries to understand and be helpful....but I just feel soooo guilty. I feel like it's my fault that I can't get things done. That if I only tried harder, or just ignored it somehow...or...I dunno.

    So, I'm definitely struggling with a bad day, and I thought I would post a few of my vents....because sometimes you just have to talk to people who know what you're going through! And it's nice to not have to try to constantly explain yourself!!!!

    Somedays....I really just wish I could spend the entire day in bed. That it was ok to just stop and take care of myself. Admit that maybe I don't have to be superwoman and push through all the crap and pretend everything is going well....but, so far, life doesn't seem to be wanting to give me that kind of break!

    So, there's my long vent of frustrations, thanks for listening! Time to go get some purr therapy from my two fur babies

  • #2
    If you've tried pretty much everything else, you might want to consider going ahead with the scheduled hydro. I just had one on 12 days ago --- the one before that was in October of 2009 --- and it lasted 18 months before the pain returned. I had a few short term flares during that time, but mostly felt okay.

    Stay safe

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    • #3
      Sorry to hear about your pain!

      I have a couple of words of encouragement for you:

      (1) You are not alone - I understand your feeling. I work long hours and somedays I am so embarrassed by this disease that I find myself very upset. However, I have found some things to be helpful while driving...

      (2)While driving - I find driving really bad too - but I have found that if I sit on a cushion with a whole in the middle it really helps.

      (3) There are such things as female portable urenals. I have one in my car that I use in emergencies.

      (4) Play music that will relax you. When I am in a huge pinch - I will take my pain med (b and o suppositories) along with pyridium, and the medication that I used to help me sleep nighttime ... this is probably not the best choice because it can make you drowsy... but if I have to, I do it.

      I hope you find what will work for you.


      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. .


      • #4
        I'm really sorry you're struggling so badly, I empathise sooooo much with so many things you just said in your post, about the struggle to work long hours, the fear, do you ever get upset knowing that you can't really plan to do stuff, even something simple, incase you get pain? And the feeling of letting down your partner, I get that too. My bf is wonderful, but I feel like a terrible girlfriend because I can't give him a decent sex life, every time we have sex I end up getting a UTI again so it's infrequent and risky, which is really crap for a 23-25 year old couple. I'm due up for work in 3 hours myself and I've only had an hour or so's snatched sleep tonight inbetween being woken up by the pain.

        With what you're saying about going to the grocery store I know what you mean, I find I can't be around people when I'm feeling like this, I'm not someone who has ever suffered panic attacks but I do feel really anxious n shakey, like incase someone stops to talk to me which delays getting back to my apartment or my car in solitude, I can't be around anybody, I'm also in danger of losing my job due to so much time off sick. I feel guilty as sin calling in sick with the pain but I can't do it. I sometimes feel as if people think I'm being negative or not trying hard enough because they can't see the pain or the condition, you know? But I've been trying so hard for six years through working, studying for a degree, looking after my sick mum, watching her die recently, supporting myself and working voluntary jobs for my future alongside the 9-5... I don't know how I've done all this with this health problem but I somehow have and I can't keep being strong.

        I do risky things like mix up my medications to suit what I need, taking way more painkillers than the packet says in a bid to try and get some relief, taking other people's morphine just to get enough relief to get to the emergency doctors down the road every time I have an infection, mixing up old medication like tramadol, pregabalin, ketamine, morphine and over the counter painkillers to do anything to dull this out and get some rest, it's dangerous but in the moment I truly don't care.

        You're not superwoman and this pain is debilitating. If you wanna message me your MSN or facebook we can chat, I've already made one friend on here a couple years back and it helps to know someone else is going through this, especially when it's invisible and your friends and family can only really empathise so much.
        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.