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  • super sad, had to quit job

    I had to give notice at my job today. I didn't like the job anyways, but I'm sad to lose a second job to my pain. Going to work for 9 hours a day was just totally unmanageable, and I couldn't deal with my pain at all. I was going to the bathroom like 10 times an hour, and I just knew it wasn't going to work out. My first job I left was more devastating, because I actually loved that one. It was a reporting job, and I was proud to get it right out of college. I feel super sad because I feel like this pain has totally taken over my entire life.
    For those who don't know me, I was diagnosed like 5 months ago with IC. I presented with typical symptoms but don't respond much to meds/diet/etc. My physical therapist thinks much of my pain is coming from my pelvic floor dysfunction, but at this point it doesn't really matter because it hurts just the same. I follow a strict IC diet regardless because I have had occasional symptoms from spicy foods. Any words of encouragement would be helpful, I am just 23 and I already feel like my life is completely over because of this. I just want to get back to my career and my fiance and carry on with life, but those with spouses know how hard being with someone can be when you have this horrible pain. I don't want to live the rest of my life this way.

  • #2
    Re: super sad, had to quit job

    I understand your frustration. I am afraid of losing my current job due to the constant pain and bladder problems. Luckily I have a very nice boss and my colleagues are very understanding. I chose to be completely open with them about my disease. But I am unable to work full time and lately I get even fewer hours in. I am waiting for surgery to cauterize the Hunner's lesions and I cross my fingers that it will happen soon.

    I also haven't had much response to medications, with the exception of Betmiga which has reduced the bladder cramps. I was put on amitriptyline but responded very badly to it. I'd wake up at night with frightening panic. It did reduce my pain but the side effects were just too bad. Now I'm trying Lyrica to see if it will help.

    The disease has slowly robbed me of my social life, my athletic hobbies, my music (I play guitar), going to movies, concerts etc. I stay at home every evening now, and I'm usually too tired or in too much pain to actually do anything. It's sad. But we have to learn to cope with it.

    Sorry just rambling here...I feel sorry for you. I really hope you can find some work that can be done from home. Would it be possible for you to become a student and learn something new?

    Hang in there, mate.
    Male (45) living in Oslo, Norway. Diagnosed (cysto) with BPS/IC with Hunner's lesions on 23 Nov 2015.
    Symptoms: severe bladder pain, bladder cramps, urethral burning, painful urination, rectal spasms, acute retention (requiring self catheterization).
    Treatment: successful hydro w/fulguration on 21 Dec 2015. Complications due to blood clots in bladder, second surgery cleaned it out. Currently on weekly Uracyst instillations. Almost symptom free!
    Other diseases: IBS and chronic asthma, both of which are under control through meds and diet.

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    • #3
      Re: super sad, had to quit job

      I can't help but feel like I've turned into an 88- year old woman overnight. I would give anything to feel free like I used to. I would actually try ANYTHING to get out of this pain.

      Comment


      • #4
        Re: super sad, had to quit job

        Hi girls, sorry you are in so much pain.
        I too haven't worked for 9 months now. It feels so awful.
        I see a pain psychologist who has given me some great strategies. I know it all seems hopeless, and don't worry ,I've been there too, but she has really helped me cope. If youre interested I can write some of them down here for you and pass on her knowledge. xxx
        UTI 3/2015
        IC ,PFD
        prescribed meds: Endep 60mg, Elmiron 400mg, BC. Enablex 7.5mg.

        Supplements: Chitomur peptide, colostrum, Echinacea, liver detox swisse, calcium citrate, glucosamine, Psyllium Husk.

        Daily diet: Breakkie- oats with chia seeds and no fat milk. Post workout-turkey breast with mixed veggies. Lunch-raw green soup with rye roll and handful of peanuts/almonds. Dinner- changes but meat and veg. Dessert-banana and sugar free custard (homemade) or banana and apple bake with almonds cinnamon and honey with a dollop of coconut cream.


        Tried: tramadol, cystoprotek, multi right, diazepam, vesicare, Ditropan, mirabegron, Flomax, lyrica, progesterone.

        Comment


        • #5
          Re: super sad, had to quit job

          What are you guys doing in terms of treatments? What's helping? I feel I've tried EVERYTHING for the bladder... instills, meds, pills. Baking soda doesn't help, diet doesn't help although i stick to it anyways out of fear. I recently entered physical therapy for pelvic floor dysfunction. apparently a lot of my pain could be coming from there, although I think I have IC for sure, to some degree.

          Comment


          • #6
            Re: super sad, had to quit job

            Originally posted by wilsonsh View Post
            What are you guys doing in terms of treatments? What's helping? I feel I've tried EVERYTHING for the bladder... instills, meds, pills. Baking soda doesn't help, diet doesn't help although i stick to it anyways out of fear. I recently entered physical therapy for pelvic floor dysfunction. apparently a lot of my pain could be coming from there, although I think I have IC for sure, to some degree.
            In regards to your having tried so many pills - have any of them been narcotics? While it doesn't fully take away my pain if I am in flare it certainly takes the edge off to where I can get some sleep and do light chores around the house.
            My IC has been stable for 2+ years now and I don't even think about my bladder most days. It's such a great non-feeling! My hope for you all is that you get to a point where you can start living again. It can and will happen! Don't give up ever!

            History:

            Age: 31
            Diagnosed: 2011
            Urologist: A truly wonderful doctor who specializes in IC and is not afraid to manage the pain of his patients.
            Surgeries: Cystoscopy with Hydrodistention (2011); Laparoscopy (2012)
            Medications for IC: Benadryl, Elavil, Elmiron, Gildess FE (continuous) (also for Endo), Nucynta, and Prelief.
            Flares: Pyridium or Cystex, Tums, vanilla ice cream, plain baked potato, and Valium.
            IC diet: Yes! It took me 1 and 1/2 months with NO cheating (that's SO important) to notice it working. However now, I am able to cheat occasionally. But I never overdo it.
            Other medications: Atenolol, Cymbalta, Armour Thyroid, and Zetia.
            Other conditions: Endometriosis (stable), Fibromyalgia (stable), Hypothyroidism (not stable) and of course IC (stable).

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            • #7
              Re: super sad, had to quit job

              I had a lot help from physical therapy. I used to have a lot of pelvic pain, but after 5 months of PT it went away. Now I "only" deal with bladder pain, which is felt in the urethra, lower abdomen and perineum.

              When it gets too rough I take tramadol. You should ask your doctor about it.

              I have learnt to self-catheterize, which has helped me get rid of a lot of nasty episodes with extreme urgency and pain where I was unable to urinate. Self-cathing has made things more bearable for me.
              Male (45) living in Oslo, Norway. Diagnosed (cysto) with BPS/IC with Hunner's lesions on 23 Nov 2015.
              Symptoms: severe bladder pain, bladder cramps, urethral burning, painful urination, rectal spasms, acute retention (requiring self catheterization).
              Treatment: successful hydro w/fulguration on 21 Dec 2015. Complications due to blood clots in bladder, second surgery cleaned it out. Currently on weekly Uracyst instillations. Almost symptom free!
              Other diseases: IBS and chronic asthma, both of which are under control through meds and diet.

              Comment


              • #8
                Re: super sad, had to quit job

                Originally posted by wilsonsh View Post
                What are you guys doing in terms of treatments? What's helping? I feel I've tried EVERYTHING for the bladder... instills, meds, pills. Baking soda doesn't help, diet doesn't help although i stick to it anyways out of fear. I recently entered physical therapy for pelvic floor dysfunction. apparently a lot of my pain could be coming from there, although I think I have IC for sure, to some degree.
                I've tried LOTS. Bladder spasm meds included vesicare , betmiga, ditropan. Stayed on vesicare mostly but found I had trouble weeing and had to push. So off those. Biggest help has been amitriptyline at 60mg for nerve pain. And pelvic floor physio. I have PFD and this makes everything worse. When we are in massive pain we clench/tighten up and strangle urethras and bladder necks so I take a muscle relaxant ( diazepam)
                I take trimethoprim post coital to avoid infections.
                I take a lot of lactobacillus and a yeast called s.boulardii.
                I drink barley after which is supposed to eradicate pathogens. And d- mannose to wash away unwanted bacteria in bladder.
                I also take colostrum bovine and echinacea for immune system. Plus
                Natural Gabba for calming nerves.
                Ice helps hugely for me . I avoid heat and don't bath anymore.
                Pain psychology has also been helpful.
                I've spent so much time energy and money on trying to get better but if I feel better it's worth it. Then you flare again and you get seriously disappointed.
                Oh and the diet. I never stray from the diet. Not all the unfriendly foods bother me but the main ones are 1-tomato2-citrus 3-caffeine including chocolate 4- alcohol . Really missing coffee and oranges and pineapple but the rest is easy. I don't take pain meds as they don't work for me. I've tried panadol -didn't work tramadol - made me sick ,morpheine - made me sick , nurafen plus -did work but seriously constipated you so puts pressure on everything else and straining to pooh gave me hemmaroids and nerve pain in anus.
                What do you do?
                UTI 3/2015
                IC ,PFD
                prescribed meds: Endep 60mg, Elmiron 400mg, BC. Enablex 7.5mg.

                Supplements: Chitomur peptide, colostrum, Echinacea, liver detox swisse, calcium citrate, glucosamine, Psyllium Husk.

                Daily diet: Breakkie- oats with chia seeds and no fat milk. Post workout-turkey breast with mixed veggies. Lunch-raw green soup with rye roll and handful of peanuts/almonds. Dinner- changes but meat and veg. Dessert-banana and sugar free custard (homemade) or banana and apple bake with almonds cinnamon and honey with a dollop of coconut cream.


                Tried: tramadol, cystoprotek, multi right, diazepam, vesicare, Ditropan, mirabegron, Flomax, lyrica, progesterone.

                Comment


                • #9
                  Re: super sad, had to quit job

                  I follow the diet closely and take prelief if I'm going to have anything acidic. I take probiotics, oil of oregano, chorella, and a few other things for general health. Nothing specifically for bladder anymore, I have been thinking of giving Elmiron another try...I don't actually have flares, I am kinda just in pain all the time consistently. My physical therapy reproduces my typical pain, so my therapist thinks most of the pain is coming from inflamed pelvic muscles. That could explain why I haven't responded to anything bladder-related. I'm seeing a urologist soon to re-evaluate. My past few urologists were fine, I just was seeing one in a different town and I want someone here I can see regularly. The only things that help my pain are valium, xanax, and medical marijuana.

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                  • #10
                    Re: super sad, had to quit job

                    Originally posted by wilsonsh View Post
                    I follow the diet closely and take prelief if I'm going to have anything acidic. I take probiotics, oil of oregano, chorella, and a few other things for general health. Nothing specifically for bladder anymore, I have been thinking of giving Elmiron another try...I don't actually have flares, I am kinda just in pain all the time consistently. My physical therapy reproduces my typical pain, so my therapist thinks most of the pain is coming from inflamed pelvic muscles. That could explain why I haven't responded to anything bladder-related. I'm seeing a urologist soon to re-evaluate. My past few urologists were fine, I just was seeing one in a different town and I want someone here I can see regularly. The only things that help my pain are valium, xanax, and medical marijuana.
                    There's a link in my signature to the AUA Guidelines For Treatment that will give you some suggestions to discuss with your doctor. I hope you find some relief soon --- you might want to think about a job with less hours when you begin to feel better.

                    Warm hugs,
                    Donna
                    Stay safe


                    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                    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: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    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.
                    [3MG]

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

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                    • #11
                      Re: super sad, had to quit job

                      Donna, yes, I definitely want to discuss other things we could try! I am open to other options, and I might give Elmiron a second go.

                      Comment


                      • #12
                        Re: super sad, had to quit job

                        I am so sorry. You sound like me. I am considering quitting my job too. I work in a high-stress office 8/hrs a day with an hour lunch. I hate my job, but I am trying to stick it out until next month because my "temp" contract is up anyways. I keep messing up a lot, and I feel horrible about it. I am distracted by the pain and frequency. I also am dealing with really horrible management and communication. I'm sorry.
                        ----
                        Diagnosed Nov 14 via hydro with cysto
                        --
                        Tried and Didn't work:
                        -Hydrodistension
                        -Oxybutinin, Troviaz, Vesicare, Cyrotec, Trumadol, cimedidine, myrbetriq, sancuria, imetidine
                        -Tried DMSO instill twice and could not hold it for more than 15 min. Put me in 10/10 pain for days.
                        -Tried Elmiron
                        -Pelvic floor therapy for 2 months Returned this month
                        -Interstim Advanced Trial, Pudendal Interstim Trial
                        -Gabapentin cream for VV
                        - Botox in the pelvic floor & Bladder, Pudendal Nerve Block

                        Tried and did work:
                        elavil for pain only 25mg a night
                        Trying: psychological therapy, doxepin 25mg at night
                        Diagnosed:
                        PFD, Vulvar vestibulitis, IC

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                        • #13
                          Re: super sad, had to quit job

                          I'm just feeling really desperate to get back to living SOMEWHAT normally. I don't care if I cant do the things I used to, I just want to be able to get up and take a shower without it taking 98% of my energy away

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                          • #14
                            Re: super sad, had to quit job

                            Can I help? I have IC yes and learning about what and what not to eat...I found out how to stop it almost totally in its tracks...It stops as you know little at a time during a flair but, this keeps it from burning until you are done with the bout and Urinate clear and comfortable
                            it is call Tulsi, I use Tulsi tea which is Holy Basil not kidding

                            one more that works for me is Baking soda 1/2 tsp in cup of warm water
                            both mentioned products bring your body to an Alkaline state / Urine too here is link about Tulsi below

                            http://realfoodforlife.com/holy-basil-benefits/

                            I am a nutritionist and love helping myself and others thanks
                            Jane

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                            • #15
                              Re: super sad, had to quit job

                              I love tulsi tea!!
                              What would your best advice be?I follow the IC diet closely, but I am vegan so it's hard for sure.

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