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  • hi i was recently diagnosed and want to share.my story

    Hi my name is Anna. I have had symptoms since the end of july. I thought I had a bad uti but just recently I went to a urologist and was diagnosed. Can't say I was too happy about having a chronic disorder. He planned on doing a cystscopy in october. Im not going to lie....im nervous about it and how it will feel. Any tips or advice???? Im currently taking elmiron, prelief, urelle, and diet changes. I also would appreciate advice on pain free or flare free sex. I know its early for me to be diagnosed but.that is probably good. I appreciate any and all.help. im new at this.....hope to chat with you!!

  • #2
    Welcome sister newbie

    I too have been newly diagnosed. I am forgoing the Cystoscopy as I had one ten years ago for chronic UTI's and they found nothing wrong with me. I've heard from my doctor that a Cystoscopy cannot really identify IC. don't want to scare you but it's not pleasant. It felt like instant UTI pain in the urethra. I am seeing a Urologist next week however for ongoing management of this horrible condition. I'm working with diet as well as Elmiron 3x daily. I'm also on on Flavoxate for bladder spasms. Anyone taking that? Hang in there hon. It's draining and seems like a long road ahead but I'm hoping for the best!

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    • #3
      Hi

      Hi there,

      I was diagnosed not too long ago either. I have not had a cystosopy so can't comment on that, I have refused it so far because I know how much catheters hurt me.

      I can advise on pain free sex though, or what helps me anyway. PF therapy first and for most. This has helped me so so much with penetration. I did not know how to relax the pelvic floor until I was shown. I also take a hot bath prior to sex, I usually turn myself on because hubby doesn't know exactly where it hurts and where is ok to touch...I sometimes use a hot water bottle on my bladder afterwards and lots and lots of Yes lubricant. Position helps too, I can’t for example go on top because it aggravates my urethra. For me deep is better than shallow because it avoids the sensitive bit at the entrance to my vagina, but I would imagine if it was your bladder that was causing most of the pain (that sharp stabby pain) you would want shallower penetration.

      I hope this helps some. The diet alone has helped my frequency and pain immensely. I hope you are as lucky. Ps Prelief is a godsend!
      TMJ Dysfunction 2009
      Vulvodynia and/or PFD 2010
      IC, based on symptoms alone 2010.
      PCOS March 2012

      8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

      Currently using: IC Diet...pain meds as needed
      Medications / treatment tried and discounted:
      Fluconazole 150mg 1 per week for 6 months (yeast)
      Endep 25mg - 4months
      Lyrica 75mg - 2 months - FLARE
      Oxytrol patch - I think this caused retention.
      Countless creams, lotions and potions.
      Cystoprotek - no change in symptoms
      PT - for 1 year
      Various herbs and supplements

      Comment


      • #4
        Thanks rizzie and claire......im nervous for the procedure but I know they are going to put me out for it. I know my dr said he.doesn't think my ic will be an issue......I hope he is right. I am glad to hear your stories as well. Thankfully I have a very wonderful and supportive boyfriend and family. As I see others stories I feel my ic may be mild....but the thought of sex still kinda scares me....but I k.ow there has to be a solution........thanks.again

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        • #5
          If you're going to have an anesthetic it may be a cysto with hydrodistention that is scheduled. If that's what is scheduled, you may feel some pain for a few days after the procedure; I know I do. Hydrodistention has been a major treatment for my IC for all of my 36 years with it --- and I have had over forty distentions. The good thing is that some ICers find they experience relief for months afterwards. I usually go over a year between procedures.

          Your uro will probably order some pain medications for you to use during recovery; I suggest you ask about that ahead of time.

          Sending warm healing thoughts your way,
          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


          • #6
            Recently diagnosed..it will be ok

            Hello. I understand that is is very unpleasant to find out that you have a chronic disorder (particularly one with so little actually known about it and no cure.) I was diagnosed over 4 years ago (and assumed I had a UTI although I can not remeber the last time I had one.) I have had 4 cysto/hydros with DSMO. The first one lasted over 12 mo. which apparently is great. Unfortunately, the time between these has declined. However I continue to work 40-60 hrs a week and lead a normal life. There have been changes over the last 4+ years and I probably am not aware of all of them because they just became a way of life (i.e. long car trips are not good, one of my "triggers" is my menstrual cycle so I do not make any major plans during these times, more time spent in bed with my heating pad...)As far as advice, keeping records of everything you eat is important (and when you feel bad later). Although the food itself may not be the trigger, it is helpful (especially if you do not have severe reactions and are brave enough to try it again.) Also if frequency is an issue try to keep a record of how often you have to urinate. Do you always/typically feel like you have to go but only urinate a very small amount? I know that keeping record of urinating 35x a day is difficult. I keep track of it on my work days because I put a little mark on my calendar every time I go. That way, when I see my uro I can say I had to urinate 25x 3 days last week between 8-5. It helps instead of saying "I have to go a lot." Also my procedures were done under a general anesthesia. It is worse (after the procedure) before it gets better but it helped me tremendously. It truly changed my life. Prior to my first one I could not go anywhere because of the frequency. Be careful that you are specific about the treatments; people talk about treatments that sound similar but may differ like my general anesthesia. My hydro/cysto did show that I had Hunner's ulcers which were diagnosed as moderate to severe but are now MUCH smaller. Originally my bladder looked really bad/lots of Hunner's ulcers. I suppose this is due to Elmiron. Also drink LOTS OF WATER. I know that sounds like bad advise to give someone that has to pee all of the time, but it is helpful. Best of luck. I am home from a DSMO/hydro last week so I am not at my best but looking forwardto feeling better. I have got to the point that I look forward to my procedures, because by the time I get sceduled for my procedure I am desperate (not unusual to have a surgery schedule several weeks out; my uro's surgery scheduler knows me by now and has been GREAT to me). If I can be of any help, PLEASE let me know. Also remember that what works for one person does not necessarily work for another. Best of luck-

            Comment


            • #7
              Oops forgot something

              If vaginal pain is an issue, try a compond pharmacist. I have diazepam/valium vaginal suppositories which have been a tremendous help. I take them to work with me on a semi regular basis. You may want to try just a few at first because they can be expensive. My insurance is a pain to get a partial reimbursement.

              Comment


              • #8
                Originally posted by banana8785 View Post
                Hi my name is Anna. I have had symptoms since the end of july. I thought I had a bad uti but just recently I went to a urologist and was diagnosed. Can't say I was too happy about having a chronic disorder. He planned on doing a cystscopy in october. Im not going to lie....im nervous about it and how it will feel. Any tips or advice???? Im currently taking elmiron, prelief, urelle, and diet changes. I also would appreciate advice on pain free or flare free sex. I know its early for me to be diagnosed but.that is probably good. I appreciate any and all.help. im new at this.....hope to chat with you!!
                sorry to hear this. I had one done and it came back clean and perfect...much to my dismay...Knowing that since they found nothing it was back to square one. I had my done while awake with no pain killer, no lie tubes goin up there hurt pretty freakin bad but it only took a few minutes on mine...idk maybe my dr was quakc lol best of luck

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                • #9
                  What you had was in office cystoscopy then and it would not show ic from what I have read. Your doctor would have to do a cystoscopy with hydrodistension to see the real condition of the bladder, from what I understand anyway.

                  I am still in the process of being diagnosed myself so I am just learning all this too.
                  Conditions:Migraine, Epilepsy, Adenomyosis, Left Hydrosalpinx (inflamed,blocked fallopian tube), Neurogenic, Overactive bladder
                  Myofacsial pain disorder/Pelvic floor dysfunction
                  Medications:
                  Neurontin,Topamax,Vesicare,Hydoxizine,Urelle,Zanaflex,
                  Tramadol,Cystoprotek,Naproxen.

                  Comment


                  • #10
                    Here,here Leslieanne~
                    From what I understand as well, there is know way to diagonose IC with Hunners Ulcers without hydrodistention and elimination of other things. Hunners ulcers goes hand in hand with IC and studies say only 5-10% of IC patients are among those diagnosed with IC. Yet there are many who go undiagnosed because they are not hydrodistended with cystoscopy. After 14months my Mother was told that she has Hunners Ulcers. Her Uro only just looked at photos after this last visit and there was no physical exam done. We are shocked that this news is comming to us now, hydrodistention was done, we just didn't receive the info until now. Many things have to be rulled out before a diagnosis of IC, this will have to be done with cystoscopy and more than likely hydrodistention to rule out Hunners ulcers, as Hunners ulcers more times than not, go undetected without hydrodistention and then the problem can not be addressed. Unfortunate, but this is where we find ourselves after this long, thinking we have done all our homework. We find ourselves upset with the Uro not saying anything until now and find we are having to start over with major homework. My Mother was only told after rulling out the possibilities that she has inflamation due to IC. If you have a cystoscopy, make sure your Uro gives you all the facts, do your homework and have all your questions in order so that your not surprised later on and have the oppotunity for options now rather that a year and a half later. Carolyn

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                    • #11
                      Ive been diagnosed with IC, but ive never had a cystoscopy and hydrodistention, due to my urologist not wanting to cause me more pain. I suspect i have Hunners Ulcers and i want the operation done so they can burn them if theyre there. also im almost out of treatment options to get out of this horrible flare ive been in for over 6 months, i want the procedure done for its own possible help as well, even if i dont have the ulcers.
                      i was wanting to know. those of you who have the hunners ulcers, what is your pain like? I get stabbing pains at the bottom of my bladder, and have had a history of blood in urine. but not all the time. do you who have the ulcers always have blood in your urine?

                      id really appreciate your feed back! thanks
                      I love my life with my wonderful husband, no matter how much "in sickness" rather than "in health" we go through.
                      I had a cystoscopy with hydrodistention done on Feb. 26th to see if it would get me out of my horrible 8 month flare.
                      Doing great so far! hoping i can stay this good with everything i'm doing!

                      Things I've Tried: -Physical Therapy - Oxybutynin - Pyridium - LOTS of muscles relaxers/tranquilizers - Chiropractor - Rescue Instillations
                      - Lyrica
                      What I'm doing now:
                      -Elmiron 200mg 2X a day - Uribel 2-3x a day - Baclofen 10mg @ night - Atarax 10mg @ night- Lidocaine patches when needed - Generess Fe
                      -Formula 303 2-3X a day (homeopathic muscle relaxer recommended by my Urologist for muscle problems after antibiotic)
                      -Aloe Vera juice
                      -P.P.T. tea with Buchu leaf
                      -IC diet
                      -Stress relief yoga
                      -Kitty snuggles & watching my reef tank

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