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  • #1

    can anyone give advice/guidance?

    hi all,
    i'm new to this but just wondered if anyone could help..
    i've been to see doctors over the last 2 years about recurrent cystitis symptoms (which i know is not cystitis but can feel similar) i've had over 7 urine tests to rule it out and no-one seems to do anything else about it!
    i'd had enough of it recently and my doctor is supposedly referring me to a specialist but he still hasn't made contact and that was a month ago.
    i have very severe pain symptoms but it is not consistent. however, when it is at its worst it can be debilitating. otherwise, probably most days it doesnt feel quite right, and always worse with an empty bladder so i always drink A LOT of fluids (esp. warm water seems to soothe). however, i have no symptoms of urgency/frequency. the last doctor i saw suggested it may be IC but have not been able to get a diagnosis as yet.
    is this typical as starter symptoms, do u think it will develop into urgency and frequency?
    any advice would be great, i'm aware it is not a doctor's opinion but as i can't seem to get one, anyone with any tips to offer would be much appreciated.
    i also have occasional stomach upsets/cramps/diarrhea and a history of M.E.
    thanks all
    Tags: None
    • #2
      Hello and

      IC effects all of us in differant ways.. Some have just pain and some have just frequency and then others have it all, pain, burning, frequency..I would really strongly suggest that you find a new doctor, because just having pain could be so many things. Like endometriosis or cyst or I could keep going, so you really need to find a doctor who can help you get the right Dg... Good luck and I hope you get your answers soon
      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

        • #3
          I think I might go back to the doctor who said it might be IC and ask if he/she will pursue either diagnosing it or ruling it out.

          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

            Comment

            • #4
              thanks you guys, the doctor who said it might be IC is the same one who still hasn't referred me. but i am going to contact my other doctor from home (i am at university) to see what he can do.
              do IC symptoms tend to usually be related to urgency and frequencY? i think if anything i have the opposite and go less than before i had symptoms.
              i also get pain around my kidneys - is this common?

                Comment

                • #5
                  My IC waxes and wanes. I have more pain issues than anything, though I do get the urgency and frequency at times. I also feel alot of pain right after I pee when the bladder is empty. This is normal with IC from what I was told. Maybe you should get a different opinion so at least you could get a diagnosis or some treatment. I know how frustrating it is going to all these doctors and leaving them knowing nothing more than when you went in. I have dealt with this issue alot. I have bad digestive issues and it took me going to 7 different GI specialists before I found one who was good and knowledgable. Sometimes you have to shop around until you find the right doctor. It is frustrating to say the least, but in the long run, it will pay off. Good luck.
                  Jen

                    Comment

                    • #6
                      I'm not sure what specialists you have seen. I see a urogynecoloist who specializes in IC. I would try to find a urogynecologist, urologist or gynecologist that specialize in IC. I have to drive 90 miles to see my uorgyne and it is worth every mile of the drive..even at $3.00 a gallon!
                      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

                        Comment

                        • #7
                          kidney pain

                          thanks for the advice, i'm going to see my doctor again this week so fingers crossed...
                          i was just wondering whether anyone had other symptoms like stomach cramps/diarrhea? also i get a lot of pain in what i think is my left kidney. i'll ask my doctor about these things too but just wondered if anyone had these things and it might all be related??

                            Comment

                            • #8
                              b85 That sounds alot like IBS.. Goggle it and look at the systoms
                              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
                                  Hopw all goes well at your appointment, please let us know.
                                  'The will of God will never take you where the Grace of God will not protect you.'

                                    Comment

                                    • #10
                                      thanks, i'll definitely let you know! fingers crossed.

                                      i've been wondering about ibs, and it does often seem to crop up with bladder problems too...it might be that this is the case and it also only really strikes in times of stress (normally alternating between this and urethral pain) but i'm not quite sure where the kidney pain comes in. it's all very random. things come in threes tho right?!

                                      aren't new symptoms just the most enjoyable thing in the world....

                                        Comment

                                        • #11
                                          b85 Mine comes in threes..lol I have IBS C..And when it acts up and I finally go .. I flare and my kidneys and back kill me.. But I have had many test on my kidneys and they are very healthy, so I think its prob just from the stress of the IBS and the flare.. It sucks though....
                                          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

                                            • #12
                                              to the ICN! I hope you are able to find some answers to what is causing your symptoms soon.
                                              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

                                                • #13
                                                  update!

                                                  Have just been to the doctors - the guy i saw this time was so much more helpful (finally!) he suspects either IC or Vulvodynia(?) and he said my IBS symptoms are common with those sorts of thing. He also examined my kidneys and said they feel fine. AND he's referring me to a Urologist and doesnt know why the previous doctor hadn't... So it's looking up i think!
                                                  I asked for something for the pain in the meantime and he's prescribed Amytriptiline tablets. I've just picked them up and the list of side effects is as long as my arm so will postpone taking them until Friday when I have completed my degree.
                                                  I'm just so happy someone finally took note and took me seriously. Thanks for all of your kind messages of support, you have no idea how much they help especially on those bad days...

                                                    Comment

                                                    • #14
                                                      It sounds like you're on the right track. I hope you have some answers soon.

                                                      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

                                                        Comment

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