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  • Tests...help (kind of long)

    I have been crying for the past hour reading these posts on these procedures...and I am scared to death. I was diagnosed in 2009 by Dr. Parsons when I lived in SD. He had me chart my pee quantity and times for about 3 days (if I remember correctly) or maybe a week....he diagnosed me from talking to me for a good 45 minutes...he did a thorough history. I took the Elmiron but after a few days I felt like my symptoms got worse so I stopped it...Ironically enough I kind of went into remission for the past year or so....Till now...I had my first real FLARE...its been about 7 or 8 days now.. On March 10th I had a tubal ligation by laproscopy and they put a catheter in me (i was sleeping) 6 days after that surgery I started having my first real FLARE...At first I thought "oh I probably got a UTI from being cathetered...so I told the GYN and he called in Bactrim"...Well no relief and only 1 day left of the anti biotic so it wasn't an infection...it must be my first real FLARE
    I don't know if it is from the Tubal? or having a Catheter in there? or what?

    So today I made an appt. with a Urologist here in VA for Wednesday..and I am soooo afraid they are going to want to do 1 of those tests..I am crying so bad... please don't be judgemental of me...but I couldnt take the pain..18 years ago I had a child I had an epidoral..they put a catheter in me while on the epidoral I actually felt it...it hurt!!! and I was numb from the waist down...the child birth itself and being induced didnt even compare to me feeling the Cath.. how could I ever do those other procedures???

    I feel like I want to use that as a last resort....I am just so afraid now that the new Urologist is going to want me to do them. I know some ppl get relief..but some GET WORSE. I don't think that is a chance i want to take.

    I just feel so scared right now.

  • #2
    Well, first of all Bactrim is not that strong of an antibiotic, so it's possible you just still have an infection. I've had to switch to another antibiotic after Bactrim did not do the job many times.

    If that is not the case, and you need futher tests, you may not need a lot of other tests, it's kind of up to you. Just educate yourself on what you may or may not get, and think about it and talk it over with your doctor. I had the cystoscope, which really didn't show anything, it's not really a good test for IC. It wasn't really that horrible to me, just slightly uncomfortable. But if I had found this site, and been better educated, I would have know that it wouldn't really do anything for me and I might not have gotten it. Knowledge is power.

    So getting catheterized is traumatic for you, you might just opt for treatments that don't involve getting catheterized. Educate yourself and don't let anyone push you into getting anything you don't want. And if you do get a procedure they may be able to work with you with different methods or pain meds. I had the hydrodistention with is worse that a cath, but I was out for it and so it didn't matter. My bladder was irritated later, but not that much worse that it ever is, and they gave me the pyridium and I had pain meds.

    Comment


    • #3
      Alot of doctors want to do the in office cystoscopy. There are new guidelines, see my links below but I don't know how many doctors are following them. I feel my UG is conservative but he at least wanted to do an in-office cystoscopy to rule out cancer and just to see the general health of the bladder. You can request a thin cathether, I don't know the guage but others here too. You could request some numbing solution to be put in your urethra.

      I'm sorry you're scared and upset! Maybe whoever did your cath all those years ago was rough and/or didn't know what they were doing. They're uncomfortable I agree and I never look forward to them! I know how you feel, I put off having any tests done literally for at least 10 years! ha ha ha I'm not kidding. When I finally went and had it done it wasn't that bad, not nearly as bad as I thought it would be.

      Hope your appt goes well.
      Cindi


      Gelnique for frequency/urgency - works great
      Macrobid after sex
      Prilosec, continuous birth control pills
      synthroid .088mg, mucinex-d, restasis

      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

      IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
      AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
      AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
      Great treatment flowchart on page 19 of the pdf

      Comment


      • #4
        tests...help

        Hi,
        I'm sorry you're feeling so scared.
        I know this can all be a bit intimidating with all the information, stories and everything but keep in mind that there are good stories too.
        I had a cystoscopy with hydrodistension, under general anesthesia. I should say that I probably have one of the most sensitive bodies around, and really, it wasn't so bad. My bladder was more sore for about two days, and then it was back to it's usual self.
        I agree that you should educate yourself and then talk to your doctor about your concerns regarding testing.
        In the meantime, try the diet on this forum, it really helps, use heat and try to relax a little, (easier said than done, I know).
        Keep writing to us.
        Laurie

        Comment


        • #5
          Thanks Lisarose..and Cindi...

          Yea...I think I am going to take the med's approach first. I want to try maybe some anti spazmatic stuff...and just something to try and stop the frequency and urging....I guess I will try the Elmiron again for longer than a few days...*hoping it works and my hair doesnt fall out*

          Comment


          • #6
            Thanks Laurie.... I will try the heat..I love hot baths..but I want to wait for my little scab from the Laprosopy tubal ligation I had done on the 10th to heal completely.

            I know with any treatment there alot of good stories and bad...but the bad in this case...ppl were soooo much worse off..I just dont think I am at the point to risk that yet

            Comment


            • #7
              Cmcliem....why would the dr. need to re-diagnose me??? I was already diagnosed by Dr. Parsons....

              Comment


              • #8
                LISAROSE>...i am hoping it is an infection and the bactrim just didnt work...b/c I have been trying to hold my pee for longer times..and I dont know if this is normal ...but I have been feeling some pain in my kidneys when I do...??? So maybe I do have an infection...

                Comment


                • #9
                  Records

                  Originally posted by nnj925 View Post
                  Cmcliem....why would the dr. need to re-diagnose me??? I was already diagnosed by Dr. Parsons....
                  I would say they won't if you can get your medical records sent over from Dr. Parsons? That would probably help alot, otherwise it seems like each doc has their own way of doing things.

                  Luckily with elmiron hair loss occurs in only 4% of people! It usually starts within the first month and is usually one patch instead of hair all over.
                  Cindi


                  Gelnique for frequency/urgency - works great
                  Macrobid after sex
                  Prilosec, continuous birth control pills
                  synthroid .088mg, mucinex-d, restasis

                  Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                  Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                  IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                  AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                  AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                  Great treatment flowchart on page 19 of the pdf

                  Comment


                  • #10
                    Originally posted by nnj925 View Post
                    I have been crying for the past hour reading these posts on these procedures...and I am scared to death. I was diagnosed in 2009 by Dr. Parsons when I lived in SD. He had me chart my pee quantity and times for about 3 days (if I remember correctly) or maybe a week....he diagnosed me from talking to me for a good 45 minutes...he did a thorough history. I took the Elmiron but after a few days I felt like my symptoms got worse so I stopped it...Ironically enough I kind of went into remission for the past year or so....Till now...I had my first real FLARE...its been about 7 or 8 days now.. On March 10th I had a tubal ligation by laproscopy and they put a catheter in me (i was sleeping) 6 days after that surgery I started having my first real FLARE...At first I thought "oh I probably got a UTI from being cathetered...so I told the GYN and he called in Bactrim"...Well no relief and only 1 day left of the anti biotic so it wasn't an infection...it must be my first real FLARE
                    I don't know if it is from the Tubal? or having a Catheter in there? or what?

                    So today I made an appt. with a Urologist here in VA for Wednesday..and I am soooo afraid they are going to want to do 1 of those tests..I am crying so bad... please don't be judgemental of me...but I couldnt take the pain..18 years ago I had a child I had an epidoral..they put a catheter in me while on the epidoral I actually felt it...it hurt!!! and I was numb from the waist down...the child birth itself and being induced didnt even compare to me feeling the Cath.. how could I ever do those other procedures???

                    I feel like I want to use that as a last resort....I am just so afraid now that the new Urologist is going to want me to do them. I know some ppl get relief..but some GET WORSE. I don't think that is a chance i want to take.

                    I just feel so scared right now.

                    I hate getting cathed too. When I got my cystoscopy w/ hydro it wasnt as bad because I was under anesthesia. My uro wanted to make sure I didn't have hunters ulcers.
                    Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

                    Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

                    Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

                    Comment


                    • #11
                      Sorry for being late to the conversation but I'm the same way. I told my last uro they'd have to use GA for a scope but she refused so I left and am going to see another one after sending a very long letter explaining my medical phobia and the need for GA. I don't know if she'll help or not. I refuse to do a hydro due to the 50/50 rate people have here, but the only other option is the scope. Just need to find someone who'd use GA for it..
                      • 27 year old student
                      • Had symptoms since I was 5
                      • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
                      • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
                      • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
                      • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


                      Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

                      What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

                      What didn't work: Elavil, vistaril (12/22)

                      Comment

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