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  • Down in the dumps

    I am sitting here on the couch with the laptop and everybody else is in bed. I think I'm getting tired but I am just so depressed. I had my hydro on Wednesday and my bladder looks "normal." No further info than that because I couldn't think of what else to ask my dr because I was still have out of it and in recovery when he told me this!! He told my hubby the same thing, looks normal but didn't offer any other explanation for what could be going on. I now have to wait two weeks to go back and see him and find out what the biopsy results showed. I am so worried that he is going to tell me that everything looks fine and that my bladder is normal and that he can't help me. I really don't think my bladder is normal or I wouldn't pee 40 times a day
    I feel like I'm going crazy too because the hydro did not hurt nearly as bad as I was worried that it would. That's great, I'm sore and burning some but it's not much worse than my everyday symptoms so I'm okay there. My uro even gave me vicoden for post surgery which I was happy about. I've been taking them to keep the pain at bay but I've been so tired. I don't know if it's because I was under the general anesthia or if it's from taking the vicoden. I took 2 naps yesterday and two today, what the heck! I told my boss I would come back to work on Monday because I really need to but I feel like I'm still so tired that I really don't want to.
    I just hate that I have to wait another two weeks to HOPEFULLY find something out and I might still be at square one. I have been seeing this uro for a couple of months now trying to get this all figured out and I am so scared that I am going to wind up back at square one with a new dr because all my tests will come back "normal"
    Alright, hubby just woke up, thanks for listening ladies
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

  • #2
    I having been sitting here for several minutes trying to think of how to say what I want to say, but I have already taken all my meds (and a few others I dont normally take, since I dont feel good), so my mind is pretty foggy right now. But, I wanted to tell you that no matter what your cysto/hydro shows, your bladder is still not normal. It is not normal to pee that many times a day or have the kind of pain that you do. (I actually mean this to be reassuring, it just isnt coming out quite right. )

    What I am trying to say is that I had the same fears before my Cysto/hydo. I was afraid that if nothing showed up, then my Dr. wouldnt take me seriously anymore and that my pain wouldnt be treated. Like you, I knew that things were not normal there, but I had no idea what was going to show up. But, I had a very good relationship with my Gyn, (who actually treats my IC), and who was going to accomany the Uro into the OR, and my Gyno was going to do Laproscopic surgery to rule out Endo. I talked to my Gyno about my fears. He was very comforting and told me that no matter what things showed, he and I both knew that something was wrong, and that there was no test that could measure pain. He also said that even if nothing showed up, it did could not rule out nerve damage from past UTIs or whatever, and that could cause the pain. Then he told me that no matter what things showed, he knew that I was in pain and that he would continue to try to find meds and treatments that would restore my quality of life.

    My cysto/hydro did not show IC either. But, it did show endo that had grown thru my bladder. However the Uro thought that since my Gyno removed those areas during the surgery, that my "IC" should be cured. (This Uro said the word "IC" very sarcastically, like "that's not really what you have.) But, my Gyno, who had been treating my IC all along, told me that he disagreed strongly with this Uro. He said that the bladder would more than likely have nerve damage from the Endo that had invaded it and that while I would probobly feel better after the surgery, I would more than likely have nerve damage. He assured me that he would not leave me in pain.

    Sorry to get off track there, but my point is that just b/c your Cysto/hydro did not show IC, does not mean you dont have it, and that yours isnt every bit as painful as that of ICers who's hydros showed massive damage. Nerve damage doesnt show up the same way that other damage does. It is also poss that the treatments/meds you have been doing could have repaired the damage that would have showed up, but that the nerve damage remains.

    I also want to make it clear to you that there are several ICers here with no visible damage to their bladders who also have the symptoms that you do. They are still getting treatments and pain meds, (and obviously, are still being believed by their Drs.!) So, please dont think that due to these results that you now lack credibuility, because you do not!

    There are several other pieces of evidence in your medical portfolio that validate your pain and other symptoms. For one, you have (or can create) a voiding and pain diary for proof if it is ever needed. If you need to back date a pain diary, you can go back and print off your old posts here, particularly those in the "Help! I'm in a Flare" section. That would be a good start. Also, you have the fact that you tried instills, and believe me, everyone knows that not a soul alive would cath themselves or volunteer to be cathed if it were not absolutely necessary, or they were not in extreme pain! Also, go back and look at your pharmacy records, and all those meds you have tried! Yes, there may be a few people out there that take narcotics for kicks, but who on earth gets any "thrill" out of taking Pyridium, Elavil, Elmiron, Urisept, Detrol LA, Lidocaine, and all the other stuff we take? Lots of the stuff we take has nasty side effects like dry mouth, weight gain, insomnia, fatigue, hair loss, etc. Who on earth would take this stuff unless they desparately needed help? Not to mention all that money that we spend on Drs. visits and prescriptions! That, my friend, is your validation! That is your proof! But, if you would feel more comfortable with something more, then you could always ask for a Potassium Sensitivity Test. They arent 100% either, but I had it and it showed that I had IC, even though the cysto/hydro didnt show it, ("just" endo growing thru my bladder.)

    I hope that this helps you feel better. I dont know if it will or not. But, I just wanted to let you know that I totally understand why you are disheartened. However, things are not always as they appear, and every good Dr. knows this. If your Uro treats you poorly from now on, or says he/she cant help you after viewing your results, then honestly, it is a good thing you found out now, b/c that means that he/she is obviously not up on current information and has not studied much about the neuropathic possibilites. So, you would need a new Dr. anyway!!!

    I hope that you start feeling better soon, both physically and emotionally.

    Hope this helps!

    Hugs,
    Amy

    P.S. If I read what I wrote tomorrow and none of it makes sense, then I blame the meds! My apologies if I didnt explain what I am thinking very well tonite!

    Comment


    • #3
      I'm so sorry that you're struggling with your uro. When my symptoms first started, I saw two male uros who blew me off completely and told me that there was no way I had IC. Stupid jerks! I was completely depressed and despondent. I literally 'shut down' for three weeks...wouldn't get out of bed, etc. Then I pulled myself together with the help of this site.

      Anyway, a year later I moved across the country and found a wonderful female uro pa who diagnosed me with symptoms alone. My latest Uro is a male and is great.

      So....if this one blows you off, find another Uro!!!!
      mom_in_ma

      Comment


      • #4
        Oh thank you so much for the post Amy! You always seem to know what to say, even when your meds have kicked in I really needed to read those things. It's nice to hear that someone thinks that I'm not crazy, lol. By the way, you made perfect sense to me.
        I guess I'm just worried that my uro won't want to treat me for IC, which I shouldn't even speculate on until I go for my hydro follow up and see what he says, he's been good to me so far so maybe I'll be okay. My gyn thinks that I have it but they're not doing much for me other than the Elmiron. I already had the PST done by my gyn and that's how I was orginally diagnoised, when I went to see this uro he was the one that said he didn't think the PST was the best way to diagnois it. I think the one thing that really bugs me is how do you see areas of chronic inflammation on the regular in office cystoscopy but when you do the hydro it looks fine?!? I know I'm not a doctor but that doesn't seem to make any sense to me.
        Anyway, I don't know what I would do without the support here, my family is great but it's hard for other people to understand what you're going through when they don't have the same problems so thanks guys
        Christine



        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
        I have tried every oral medication as well as rescue instills and DMSO.

        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
        Also proud mom to the best Bullmastiff on earth, Claus

        Comment


        • #5
          I was tired for a week after having my hydro/biopsy done. Plus the vicodin does make you tired. Sure does me. You are not crazy and wanting answers is normal. I think waiting to get the answers is the hardest part. I know each time after having something done it was wait 3 weeks. Except that one time I was tired of hearing that and woudln't take waiting the 3 weeks so I got in the next week. Poor Uro, he got the "I'm fed up" me. Give your body time to rest from having the hyrdro done and try not to worry about your Uro not helping you with the next step. I worry about things too before they happen and have found most of the time they went fine.

          Comment


          • #6
            "Endo diagnosed in 2003 when it was removed after found growing through my bladder"

            I got that from your signature, and I'm just curious how your bladder can look "normal" if you had endo growing through it? Shouldn't there at least be some scarring? Also, when was your last laparoscopy? Endometriosis on the bladder can also cause frequency and pain.... could it be possible that the endo has come back (they wouldn't be able to tell that with a cysto/hydro)?

            I'd also suggest that you get a SECOND OPINION on your cysto/hydro results/pictures that they took. One doctor may think that it looks "normal" while another doctor may think it looks exactly like IC.

            I personally wouldn't stop looking for other causes of your frequency.... If you don't have IC, it isn't the end of the world... it could actually be a very GOOD thing because IC is a lifetime curse.... Also, just because you don't have IC doesn't mean that there isn't something else that you may have that could be causing your frequency and that might be easily treated. There are MANY things that cause frequency.... for instance, the most obvious one is Diabetes... Have they tested you for that?

            Seriously find a different doctor that is more willing to find out what is causing your symptoms. Don't try to fit the disease, find a disease that fits you.

            I hope I didn't sound mean or unsympathetic.... I really am, I just want you to have the best chance at recovery.
            current meds:
            cytotec 200mcg twice daily
            toprol
            allegra

            ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

            dx: hashimoto's thyroiditis 1998
            dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
            dx: endometriosis 2003
            dx: innapropriate sinus tacchicardia 2005

            meds tried but failed:
            elavil (6months)- severe tachycardia
            elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
            a bunch of others



            Me and my best friend's baby (also my Godson!)

            Comment


            • #7
              (((((((hugs))))))) so sorry.. I hope your biospsy comes back soon.
              'The will of God will never take you where the Grace of God will not protect you.'

              Comment


              • #8
                Oh thanks everybody yet again.
                Mary, I feel much better knowing that I'm not weird for still being tired even though my hydro wasn't too painful. I know it's crazy to worry about things before they happen but I am SOOO bad about that. I'm just going to try to relax and wait until the 18th when I go to get the results of the biopsy and we'll go from there. I think we may be getting a puppy today so that will def keep my mind off of everything! If we do get one I'll be sure to post a pic for everybody later on.
                ((((((((((((hugs)))))))))))) everybody
                Christine



                I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                I have tried every oral medication as well as rescue instills and DMSO.

                I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                Also proud mom to the best Bullmastiff on earth, Claus

                Comment


                • #9
                  Christine,

                  Remember those biopsies aren't back yet. You really don't have an answer until you get those. FYI- most biopsies are usually back withing 7 days. Maybe call after that amount of time and ask, and continue to call. They may give you the results by phone before your appointment.

                  Comment


                  • #10
                    I'm sorry about the cysto results...I want to reassure you...if it would help, my first uro was a very by the book old fashion retired Marine. Nice Man, though. He tried all the other test to R/O IC. in fact, reading the notes, he kept writing, "I believe the pt. has IC but I do not want to label her as such yet" and he kept telling me it was such a terrible disease to pin on someone. When they finally did the cysto..same thing as you except I only held about 500 cc's, (most hold 1,000 cc's under anast.) and I was showing a "wee bit of glomurations but none out of the norm" as he said munching on one of my graham crackers as he headed out the door. Well he called seven days later and said my test results from the biopsy came back positive. Hold out hope....those biopsys save alot.
                    I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                    Medications I CURRENTLY take:
                    90 mgs Ms contin (45 mgs Am/PM)
                    Percocet as needed
                    Topomax 100mg day
                    Ambien 10 mg bed
                    desipramine 25 mgs




                    If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                    Albert Einstein

                    Comment


                    • #11
                      I hope you're feeling a little better today. I completely understand your fears about the cysto w/ hydro results. Hopefully your doc won't base diagnosis and treatment solely on that. The Elmiron may really be helping your bladder!
                      Kim

                      Diagnosed August 2001

                      Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                      Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                      I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                      *****************************

                      “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                      “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                      Comment


                      • #12
                        HI,
                        Just wanted to let you know you're not the only one that feels this way. I have had abdominal pain for over 6 years and the drs have done every test in the book with all negative results. I even thought maybe the pain was in my head so I tried to forget about it but the pain was still there. I know people have pain for a reason but it got so frustrating when all the tests came back ok. I had a lap and cystoscopy in Sept 2006 and I was diagnosed with IC and Endo but the pain I had was in the gallbladder area. They wanted to take my gallbladder out at the same time as the lap but all my tests showed it was functioning normally so I decided not to take it out. If it ain't broke don't fix it. I haven't had much pain in that area since my lap so not sure if the endo was causing that pain. It is all so confusing and drs don't even have all the answers. Hang in there Hopefully they will find out where your problem is coming from soon
                        Nancy

                        Comment


                        • #13
                          The urologist who did my cysto/hydro set off months of family tension toward me when he told my mom that I had a "transient irritation", probably not IC & I'd be fine in a few months.

                          I don't know why he said that to my mom given the extreme level of symptoms I started with (voiding 60+ times a day, knifelike pain in my lower abdomen, burning), the streaking lines through my bladder in the cysto/hydro pictures, and the exclusionary process I went through (catheter urine cultures, pelvic ultrasound, cystoscopy, diagnostic laparoscopy).

                          But, it sure caused me a lot of family disbelief, which was the last thing I needed during the worst period of my life. Interestingly enough, during that time, this doctor was marking "IC" as my diagnosis on my insurance forms.

                          In fairness to him, he did give me the Elavil that brought my symptoms down somewhat, he did prescribe me Atarax & Elmiron. And when the Atarax gave me a pounding heartbeat & the Elmiron made me worse, he did write me the letter that got me treatment at the research hospital. So, in the end, he did help me the best he could, so overall I am grateful.

                          Hopefully, in spite of the cysto/hydro, your doctor will still be helpful to you & if not, take your pictures & move on to the next uro! You should still receive care for your symptoms.

                          Hoping you are feeling better soon--
                          Kadi

                          -------------------------------------------------------------
                          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!

                          Comment


                          • #14
                            You know, Christine, I just thought of this. Doctors are usually in a hurry and are very often distracted. When he tossed off that "looks normal" comment -- he might have meant anything. Like, looks normal for an IC bladder. Or, looks normal you don't have cancer.

                            I just don't think you should take that comment too seriously. You have already been diagnosed by the PST, so you do have IC. I don't even really understand why your dr. wanted you put through the cysto/hydro when you already had a diagnosis. If he thinks that that is the only real way to dx IC, he's behind the times. More and more dr.'s aren't doing them at all. I know you want to be able to trust the dr., but if the biopsy is normal AND he tells you you don't need further treatment, find a different doctor. At least for a second opinion. Meanwhile, I'm not going to tell you not to obsess about it because you will anyway; anyone would. I just hope you can keep busy enough to be distracted, so the time will pass reasonably quickly.

                            Amy, as usual, has given you excellent, practical advice, and I know you'll do your best to take it to heart.

                            I know a lot of us will be waiting to hear about your follow-up visit; meanwhile, try to be good to yourself and don't drive yourself crazy over-analyzing that one comment.
                            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

                            Comment


                            • #15
                              When you go for your follow up make sure you get a copy of the biopsy report. It is good to have it if you want a second or third opinion.

                              Ginny

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