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  • New Here With My Story...

    Hello. My name's Elizabeth. Feel free to call me Liz.

    I'll be 27 in June and I've had symptoms of "always having to go" since age 14 in 8th grade. I would spend lunchtime in the bathroom that year, in hopes that I'd have a chance to feel better and relieve my urgencies before my next class but it never worked!

    A year later I was in the psychiatric ward for depression, panic attacks and obsessive-compulsive behavior. In addition to group therapy and anti-depressants they also did vitals, bloodwork, etc., taking care of everyone physically and they detected a bladder infection with a urinalysis. You would think that that would explain it, right? For ten days I was on a thick pink liquid antibiotic, but symptoms remained and in another urine test soon after, everything came up normal. For years my doctor told me that maybe I was just tense, which, I should note, I am always very much so. I thought if there was anything else that could be wrong, he'd tell me, so I figured that's all it was and that I just had to deal with it. I became so exhausted by the unbearable symptoms of not only having to urinate, but constant fatigue and a starnge feeling in my muscles (I get to that a little later) that I couldn't concentrate in school anymore and i dropped out a little into my junior year.

    About a year ago, I received an email from Realage.com - which I subscribe to; they send health tips and information compiled by eight diffferent MDs and PHDs and I strongly recommend - and it was titled "better bladder health". Still dealing with these symptoms, I was quick to open it. They were talking about Interstitial Cystitis and its symptoms and I thought that everything seemed uncanny to what I had been going through. So I made an appt. with my doctor and discussed this with him. He agreed with my opinion and referred me to a urologist, who also agreed and performed a cystoscopy in June, confirming the diagnosis and I was put on Elmiron. At this point I had already read Robert M. Moldwin's Interstitial Cystitis Survival Guide, so i was pretty educated on the illness and knew that it could take maybe 6 months for the Elmiron to kick in. But after only three months at my next appointment talking about my still awful symptoms and the fact that Elmiron has had no effect on me yet (still hasn't, by the way; it hasn't made the IC neither better nor worse) he prescribed DMSO once a week for 6 weeks whenever I was ready. I took the prescription in, and Medicaid, which is my health care provider would not pay for it. This upset me and a couple of months ago I started to save my SSI money, when that became interrupted by my dear dog's death last month because I'm left with veterinary bills that will take a couple of years to pay off:

    Irrelevant to the story, but as I'm still grieving, I'll share a little about my dog, Snoopy: she was a Lab/Pitbull mix, only 6 years old, when she suddenly got very ill after a healthy life - pancreatitis, diabetes, ulcers, liver problems, and ultimately kidney failure. a couple of days later, the pet food recall was announced in the U.S., and that's another reason why I'm sharing this. I encourage pet owners to take it very seriously because this was the most likely explanation for her sudden suffering.

    Back to the DMSO: sifting through your stories, I don't like the sound of it! I read that symptoms are supposed to worsen for the first 3-4 weeks before they got better, but it doesn't seem like there are many cases that ended proving to be worth it! Not to look at it from a negative point of view but rather a realistic one, I'm convinced that in most cases IC is inevitably tough to deal with. In my case, pain is pretty rare, but extreme discomfort is there ALL THE TIME, and last year I was also diagnosed with Fibromyalgia, as I previously mentioned my muscles. Pain has gotten pretty bad there, fatigue really gets to me, as in spells of sleeping 12-18 hours a day, sometimes all at once, others in increments, and sometimes I'm SO exhausted but can't sleep at all because my IC urgency is so bad and i get so stressed out. IC really makes it tough to relax!

    Just curious: did anyone else stay awake for their cystoscopy? I panicked out of fear when they mentioned anesthetic, IVs, waking up with an oxygen mask and electrodes on my chest, because I've never had any kind of procedure done before that! The doctor probably should have discussed this more in-depth with me, but he barely has any time! That's another thing: he has SO many patients that are scheduled all at once that he barely has time to work with us all.

    I guess I'm done rambling for now. Glad I found this place. All the best to you all.

    -Liz
    Last edited by ICsupport1980; 04-25-2007, 04:35 PM. Reason: I noticed a couple of words stuck together; want to avoid confusion

  • #2
    I have had four hydro/cysto under general anthesia, you are only out for a very short time and I would rather be asleep for that procedure. I went through the inhouse instills, it didn't seem to help me. Then I switched URO's and I now do them at home when needed (although she would like for me to do them 3 times a week). Anyway, have you tried hydroxine (sp?), elavil, or anything other than the Elimiron? The Hydro's really help with frequency/urge feeling. In fact I am going to have another in June just for that. Good Luck.

    Comment


    • #3
      I have not had hydro but I have had 3 cystoscopies in the urogynecologist's office. I have always been awake, and have only had the urodynamics instruments used, and the cysto catheter, no O2 or heart monitors etc.
      TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
      My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

      Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
      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
      Louann

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      • #4
        to the IC Network family. I'm glad you joined us.

        I have had cystos in the doctor's office, but they just look at the bladder during a regular cysto. The hydrodistention does require anesthesia --- and I've had lots of those to help with symptoms. I'm surprised that Medicaid doesn't cover DMSO since it's an accepted treatment for IC.

        The Patient Handbook at http://www.ic-network.com/handbook will help you learn more about the various treatment options. I hope you find something that works well for you.

        I'm really sorry about your losing your pet; I feel fortunate that we only feed our dog dry food --- and we've switched to a different brand that isn't supposed to have imported grains.

        Warm healing thoughts,
        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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        • #5
          I forgot to mention that the cystoscopy without anesthetics was pretty simple. Actually they did use local anesthetic - lidocaine rubbed down there. It was ten minutes tops, a little discomfort, but nothing difficult to deal with for me. Of course everyone responds differently.

          Nope, I've never had hydro. My doctor never recommended it. (Could you please refresh my memory and tell me what that is, please?) And no Elavil. It was prescribed but I'm already on a high dosage of Luvox (an antidepressant) and Xanax - I once was on more but my primary care physician told me that my psychiatrist was giving me way too much and that the weight of my body (under 100 lbs.) can't handle that much in my system, so I cut a couple out and figured it wasn't a good idea to start on any others.

          Comment


          • #6
            Thanks for the welcome!

            Are you referring to hydrodistention with sterile water? I rememer now, that was actually included with the cystoscopy and it wasn't done in the doctor's office, it was in an operating room at the hospital. I'm gonna have to refresh my own memory on treatments by reading that part of the book again, plus what's here on the site. What I've learned is that doctors don't tell you everything; you need to research and bring it up yourself!

            Thanks for the condolences. We now have a new puppy, Santino- a 4 month old Yorkie, and he's getting dry food. Maybe later on in his life we'll feed him home-cooked meals prepared especially for him. There also was snacks from Wal-mart (Ol' Roy brand) hat were recalled and this is what we used to give Snoopy. I heard a theory somewhere that it might be the work of terrorists. You really gotta watch out for that imported stuff.

            Comment


            • #7
              Liz, there are so many different treatments out there for IC, and combinations of treatments. If your doctor doesn't have time to talk with you about them, or is fixated on one particular course of treatment, I would say -- time to find a new doctor!

              Many, if not most, IC patients also suffer from one or more auto-immune conditions (like fibromyalgia), and depression is not at all rare. Good IC doctors understand this and try to find treatments that can help multiple problems, like low-dose elavil. It is very good for helping normalize sleep in fibromyalgia, and can also help with pain and frequency of IC. You CAN be on another anti-depressant at the same time as elavil, under a doctor's supervision. Antihistamines like vistaril or ataraz also help both IC and fibro. Besides DMSO, there are lots of other different treatments that can be instilled into the bladder. I get heparin/lidocaine/sodium bicarbonate, which feels good the minute it's instilled, and continues to help for several days. I do them at home twice per week.

              So, I guess my point is, keep researching and try to find a doctor who understands IC and IC patients. Also, KEEP RECORDS of every test, procedure, and medication that you have. Each new doctor needs to know what's gone before, and it's no good trying to recall everything at once, especially if you're already anxious.

              Anyway, to ICN. You will find a lot of support here. Keep us posted as you go.
              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

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              • #8
                Hugs
                Ronda

                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:
                http://www.ic-network.com/handbook/

                Diet Reference Sheet:
                http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                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.

                Comment


                • #9
                  First of all WELCOME!!!!

                  Second, I have to add support to what Carolyn said. Having a doctor willing to discuss any and all options is the key to getting relief. I just recently switched doctors and the understanding and support he offered in helping me to get better is the best thing. It takes time to find the right combo and you need a doctor willing to be creative if the more common combos are not working for you. You are the best advocate for your healthcare and your gut instinct is the best signal to things. Best of luck in finding relief.

                  Sorry to hear about your dog. I know for me, mine is like my child.

                  Please take care.

                  Comment


                  • #10
                    Welcome:
                    I have had about 8 hydro's the last one about a month ago. You are only out a short time. Like the others have said, you don't like to be put under, there are other treatments to try.
                    Its a shame you are having problems with your doctor, I would try to find another one, but I read somewhere that you are on Medicaid, I don't know where you live, but if you live near me (Austin, Tx) good luck, because, most doctors here don't take it unless its seconary to another insurance).
                    Good luck in your search of doctors and treatments.

                    Comment


                    • #11
                      A lot of you bring up pretty much the obstacles that I'm facing about choosing a doctor. When I was referred I was told about how good he is and I'm always hearing praise about how much he cares about his patients and when i call he does answer questions, but be it on the phone or in person at an appointment he's always rushed. At an appt. he talks to me for 5 minutes, leaves the room without me being aware that it's finished when i have a lot to discuss! I have the impression that he cares and he's smart, but I researched this and the problem is that there aren't many urologists in my area and a lot of people in need - it's ridiculous how many patients he has at the office I visit alone. The files are shelved behind the receptionist, and by looking I have to estimate maybe 1,000 patients. And just like Mary124 said, Medicaid is pretty limited and I don't think they take everything serious enough. I did just get a call from my case worker telling me that I should show my Medicare card first and Medicaid is secondary; I'm not totally sure how different that would be.
                      I've tried to get a job last year; filled out a bunch of applications with one callback that would have had excellent benefits but I didn't get the job. On top of that, the one interview and the applications alone leave me exhausted due to the severe fatigue I get as a symtom of Fibromyalgia and I'm pretty much left knocked out! Something that angers me is that I discussed this with a psychiatrist I had a short time ago and she told me that I'm using my health problems as excuses for what i can and can't do or what I want or don't want to do. She moved and I had to see an old one who does nothing but hands out prescriptions after asking "how are you?" I answer and literally the only answer i get is "mmm-hmmm", so it's time to find a new doc in that area also. I'm offended to hear that I'm making excuses because I'm the only person who can feel what i feel and experience the effects and some people just don't understand that the typical "finish school, get a job, start a family" life is not how everyone operates. I will admit that obviously satisfaction from doctors is hard to find and I've often become indifferent and just force myself to accept everything and learn to deal on my own. Most of the time I even feel and deal better that way. I'm also aware that my parents, whom I still live with and are supportive, aren't going to be around forever and when they're gone things will be much more difficult if I don't take more action now. The exhaustion and expenses are already extremely difficult, though, hence why I tend to deal alone. I think I'm starting to get confusing.


                      Hydrodistention is actually a form of therapy? i thought it was simply an optional part of a cystoscopy where they expand the bladder and see how it reacts. I was told that I was bleeding (but it'll fix itself quickly) and that was necessary for the diagnosis. I was wondering why the doctor asked me if I felt improvement awhile after, which I did. After two days I would still urinate at night but woke up in the morning not having to and it lastedd all morning no matter how much i drank, including bottle after bottle of water the day before. Normally the urges are always there, so maybe there's hope with hydrodistention and I should try it again, huh?

                      Thanks for reading and all your feedback so far. Honestly I dislike forums. I'm paranoid and anxious and reply after reply can get exhausting but i don't think I'm doing too bad here and the attitude of the people involved is a huge factor. So thanks!

                      -Liz

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                      • #12

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                        • #13
                          Hi Liz...I am so glad you found us.
                          Sharon

                          Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                          Where I can be found most days.



                          Link to the ICN Patient Handbook:
                          http://www.ic-network.com/handbook/

                          Link to the IC Diet:
                          http://www.ic-network.com/diet/


                          IC 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.

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