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Frustrated as hell

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  • Frustrated as hell

    I recently got confirmation of diagnosis for IC. I had no doubt from the beginning after reading about it on the internet. It has been six months since my IC got really bad. I wake up a lot during the night. The pain makes me depressed and desperate. I started taking immipramine. I will start physical therapy in a month. Feels like an eternity when you have been suffering from moderate to severe symptoms for 6 months. I'm sure there are people who have it worse but I have PTSD and IBS too. So all together feels like hell. I have been trying to change my eating habits and have been doing ok except for the past two days. Diet recommendations are confusing. Some say milk is bad for the bladder others say soy milk is bad and dairy is ok. So it's hard to know who to mind and who not to. I will see a gastroenterologist on may 9th to control IBS becasue IC gets bad with IBS flare ups. I never imagined I would get sick with IC. Not that any of you did. I am resentful at times. Dr's seem cold and unfeeling. I understand it isn't a deadly disease but at times I feel they don't understand. They give me such far away appts and here I just want it to go away. I hate the pain. I think about death at times. I think I may still be grieving for the loss of my health, plus as I said I have a history of severe trauma in childhood so it only makes things more difficult. I hope there is some meaning to all this in the end. I guess I am feeling somewhat pesimistic right now. This pelvic pain makes me irritable. I wish everyone here the best of luck with treatment. Oh! Any one here used immipramine before? Did it work? Did it make you gain weight?


  • #2

    I am so sorry your symptoms have been so severe lately. I know how it feels; I spent a long time in the bathroom and with severe pain before I was diagnosed, and for a while afterwards until I found the treatments that work for me personally. It DID seem like an eternity until my symptoms began to respond to treatment... but they eventually did. There is HOPE.

    I know it's hard to keep your chin up and keep fighting for the best treatment when you feel ill... so please keep coming here for support and looking for support with your friends and family. That's really important, as the support of others can hold you up when you just feel like collapsing and giving up. Please keep fighting.

    I also know what cold doctors are like -- I've experienced two, and they make you feel devalued and like you are a hypochondriac, thus worsening your already weak will. I think lots of people can respond to this point as most of us have gone through that -- but it's another thing you should try to fight against. If your doctors make you uncomfortable or do not treat you as well as you'd like, by all means, fire them and switch to ones that will be nicer and more helpful!!

    Have you checked out our Patient Handbook ( and looked at the self-help section? I see you are already trying the diet, but there are other strategies for dealing with pain (heat, ice, etc). They may help until you can find a doc that will help ease it or until your medications kick in.

    As for imipramine, I've not taken it, but many here have. I do know one of the side effects can be weight gain -- I'll let others tell you how they managed that side effect.

    Again and I hope you feel better soon!!

    *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.


    • #3
      so sorry you are going through such a hard time..

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

      Link to Patient Handbook:

      Diet Reference Sheet:

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


      • #4
        Hi, I know how you feel because I'm going through the same thing as well. I'm having a hard time accepting that I have this IC and pelvic floor dysfunction. I'm used to being active playing tennis, bike riding, horsebackriding, etc. Now I'm in constant pelvic pain with bladder spasms. I too think about having to live with this for the rest of my life and think about ending suffering, but I'm tough and I'm not going to let it beat me. Hopefully during our lifetime there will be new medications and modalities that will help. I've started physical therapy and went to a pain management specialist. I'm willing to try anything that is recommended. Anyway, no I haven't tried the medication you were asking about that begins with an "I". Hang in there and know that you are not alone.



        • #5
          Welcome and hugs Clia,
          I can relate to how you are feeling. I, too have IC, PFD, IBS, and now the doctor thinks I have fibromyalgia When the doctors were first trying to figure out what I had, I became extremely frustrated and mad. When I mentioned to my brother that I just wanted to go into my bedroom and shut the door and make the world leave me alone, my brother recognized that these were signs of depression (so not like me) and told me to get into the doctor's office the next day and tell them how I felt. I did and the doctor put me on Elavil for the pain which helped with the depression. I, too, had days when I thought I could not make it, but there have been much better days since then. I am so glad I did not die. Hang in there and don't be afraid to be a "squeeky wheel" to the doctor's office. You need to let them know how you are feeling. If your doctor is not sympathetic, get a new one. I have learned to be assertive with my health needs since getting IC.
          Please feel free to come here for support anytime you need it. This is a great site and really encourages me.



          • #6
            Hi Cliatreuh,

            I'm sorry you're having to deal with all of this. IC is VERY frustrating and confusing. I was diagnosed in Jan. and I'm still having a hard time figuring it out.
            With regards to Imipramine (Tofranil is the brand name I believe) I took that for about a month. It didn't really do much for pain, but it reduced my frequency a great deal and allowed me to sleep through a night. (Which was a miracle!!) My old uro said that it strengthens the bladder and supposedly relaxes you. I don't know about relaxed, but it made me very, very tired so I could only take it at night. Right now my doctor has me trying Lyrica instead of it, but I may go back to the Imipramine. The only thing I don't like about it though is that it's an anti-depressant so you have to be careful about what other meds you take with it.

            So in total, yes I liked the medicine, but no, I can't take it 3x a day because of sleepiness. Many people have gotten used to it though, and manage to take it all day. I personally never noticed any weight gain from it, but I also take Elmiron so if I gained any weight it would probably be for that.

            *Please* keep your chin up, it does get better. My first post on here looked like this: *^%^$*(*(&&^%^%$$%. That's how I had been feeling for a year. I finally went back to my GP because my uros just didn't care about me. And while I may not be 100%, my moral is up, which really makes a difference.

            Hope that helps. Good Luck!!


            Just diagnosed w/PFD - Oh Boy!

            What I have tried: Elmiron, Lyrica, ,Methadone, Vicodin, Norco, Cystoprotek, imipramine, xanax, hydroxizine, trazadone, a bunch of anti-spasmotics and more I'm sure I can't remember.

            What I'm presently on:
            Noritriptyline 25 mg
            OxyContin 20 mg AM - 10 mg afternoon - 20 mg PM
            Zanaflex 2 mg at bedtime
            Percocet PRN for breakthrough
            Nasonex (allergies)
            Jolessa (b.c.)
            Physical Therapy 2x weekly

            Be my buddy?



            • #7
              I hear your pain. I know you will find support here and also great information and suggestions. Just post and we will reply.
              TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
              My Helpful Hints for Home Instillation:

              Institute of Female Pelvic Medicine (J. Dell, My MD)
              Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
              I post to encourage and offer total support for rescue instillations.
              Find me on facebook: L. Clark Thomas


              • #8
                I also have alot of pain. I took my first pain med this past Tuesday and it made me as sick as a dog to my stomach. I have a pre-exsisting motility issue in my stomach already. It sucks because most meds used to treat IC are NO-NOs for my tum. And I cannot take my motility med for my tum anymore because it really hurts my bladder( it is a prokinetic drug).
                You are not alone. I do hope you get some relief real soon.
                I was just told by my friend that she read an article about IC and the pain cycle. It made alot of sense. It says that the reason we have such bad pain all the time is because our pain was left go for to long. When a person has chronic pain for any length, our nerves get turned on and dont know how to shut off and continuosly send the pain signals to our bladder and we in turn are in constant pain.
                This is so true as I know first hand. Three years ago I came down with a virus that attacked my throat or the nerves in my throat and caused me severe throat burning, almost like what IC feels like, except I had it in my throat. Well, my doctor did not treat me right away and I stayed in pain for over a couple weeks. Well, by the time I was put on steroids to take down the inflammation, it was to late. I suffered with the burning for over a year and half straight after that. It was awful.
                So I do believe that this pain cycle thing with the IC is a problem for us IC-ers. We need to get the pain in check before our nerves go nuts.
                Anyhow, I sure hope you get to feeling better soon.


                • #9
                  JEN74 - Excellent excellent point about our nerves being "turned on". My pelvic pain specialist explained the exact same thing to me. Its absolutely vital to turn off any and all pain so we can heal.

                  With that being said to the original poster, you WILL be okay again. You are in a bad place right now and in pain. I'm sorry your appts. are so far and few between. You need to find the right pain management specialist who will turn off your pain. When I was diagnosed on March 1st I posted nearly everyday desperate for anyone to tell me I would be okay again. Its been 1 1/2 months that I started my treatment for IC. I still have bad days, but I have so many more good days then bad days. Treatment is starting to work. It will work for you too.

                  I thought about what it would be like to not have to deal with pain anymore in the beginning too. I suffered with SEVERE abdominal pain for 5 months before being diagnosed and started on any meds and diet. I have a husband and 2 little girls....not being here is NOT an option. Its NOT an option for you either. You will fight, you will learn all you can about IC, you will gain support from this board and YOU WILL get better.

                  Better days are ahead my dear


                  • #10

                    I am so grateful for you all's support. I am feeling a bit more hopeful right now. I have ups and downs. But the information I have been receiving from you is extremely helpful. I checked the information about the diet, so it seems like most likely I will need to do an elimination diet and see what triggers symtpoms for me. I am practicing paying attention to my body when I get tense and I purposefully relax. I notice pelvic pain gets triggered when I am angry or upset. So I know I need to continue to work on that. I love all of you women for your strength because you show me I can do this too. I haven't noticed a lot of changes yet with imipramine but it has only been a few days. It is good to know there are options. I can't thank you enough for your caring support. It really does make me feel less alone with this and more important as a human being.
                    THanks a million


                    • #11
                      Clia, it sucks that you've got these health issues but yeah, this is a good place to go for support and info. I too tend to flare the most from stress, anger, frustration, and any other host of negative emotions. Since you already know there is a link, you've got multiple physical problems, and you mentioned that you had a traumatic childhood, have you already sought counselling? I would imagine maybe you already have, but if not, that may also be a good avenue to pursue. If your body can handle it, it might also be a good idea to take up yoga. Before I was diagnosed and it seemed like I was sick for no reason, that was pretty much the only thing I had that alleviated any of my pain. Also, when you're in constant pain that seems like it never gets better, it's tempting to go off the diet because you think it doesn't matter...and maybe in the long run it won't. For now, though, you want to try to get your aches in order and get to a decent "baseline" day before you start adding anything back in.
                      Good luck.


                      • #12
                        Clia, I want to let you know you're not the only one here who has PTSD from childhood trauma. I do too. It creates a multitude of extra issues I feel. Thanks for being so brave to share that. Feel free to private message me if you want to talk about those things in relation to this disease and getting through. I'm also new to it and have been treated HORRIBLY by most of the doctors I've seen which is of course making me worse disease wise and PTSD wise. Its really retraumatizing me...nightmares and the works.

                        I think it's important to have someone to talk to who deals w/ both issues so feel free to contact me.

                        Thank you for sharing this because maybe there are more of us in this forum who would like to support each other and share the compounded ordeal. Just writing through the tears.


                        • #13
                          THanks for offering support

                          Yes, it indeed adds to the issues. One thing affects the other. It really does complicate things. For years I believed IC symptoms were psychosomatic, until they got really bad. I got up to go to the bathroom about 20 times a couple of nights, each night. I couldn't deny there was something else the matter. I was sexually abused as a child by three relatives. One was my father. The abused lasted for years. It is something I deal with every single day of my life. I have been in counseling for years and have learned to deal with the feelings but I still struggle with depression, anxiety and at times severe distress. Without counseling I would not be alive I don't think. I am able to function at work and I am able to support myself. I have a career that I love and I am grateful that I can do that because for many years I was barely able to work. So when the threat of IC came about I became very depressed. I feared I would become disabled and unable to work. I am single and have no children. I am 35 and it is difficult to deal with that. I have wanted a family for a long time but my issues make it difficult.
                          I appreciate your offering support. I think isolation aggravates things.
                          I would like to learn more about your story as well. Again thanks for your support


                          • #14
                            I'm so very sorry Clia, for what you've been through. I've written a private message to you. For some reason I got a blank screen after I sent it so please let me know if you didn't receive it. You can click on my name to send me a private message.

                            Thinking of you.