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  • hydrodistention and still in pain

    I had my hydrodistention last Tuesday and today is Sunday I am still in pain. I have an itch and burning, just plain miserable. I have a small urethra, I have been told by many doctors where they have to use the smallest tubing they have. I feel like my new doctor has ripped through me with something bigger. My doctor used this opportunity to also treat with DMSO. I told him that I had these treatments before and did not seem to help me but mad matters worse. He said that he was going to do it while I was under and try and see if it will relief some of my pain. The fluid that came out was very red with blood, for me I belief that this cocktail, that may help others, just seem make my bladder irritated.

    I guess I am wondering if anyone else has had this happen to them and what is the next step for relief?

    Marlene
    MARLENE

  • #2
    Well, everyone has a different response to a hydro. Some are fine within a few days, and some take weeks to fully recover.

    I had DMSO instilled right after mine, while still under anesthesia. I think that can make the actual burning worse, as I found out later that it's recommended that docs not put DMSO on a bleeding bladder lining, since it can then penetrate too far into the body.

    As for what you can do, call your doctor and ask to leave a urine sample. You may have an infection. This happens pretty frequently even if you're given antibiotics to take. Sometimes you get a resistant strain of bacteria.

    Were you given pain meds to take? If not you may want to ask about them when you call about the infection possibility.
    ****
    Jen

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. 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.

    Comment


    • #3
      Yes I was given pain meds. not really working.. I did call him Thursday and he thought that I may have gotten a yeast infection with all the antibiotics that I have been on. I took two pills for that, but did not work so I do not believe it is an yeast infection.

      Marlene
      MARLENE

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      • #4
        I wish I could help! If you arent better in the morning, I would definately try to get in to see your Dr. tomorrow. For today, have you tried taking an antihistimine yet? Sometimes that will help the itchy, burning feeling when other things dont. Also, if you havent tried it already, you might try taking some Tums to help neutralize the acid in your bladder. (Often the acid in urine can cause that burning and itching too, or make the existing irritation much worse.)

        I wish I could think of something else! I agree with Jen that it could be an infection. I know alot of people get them from being cathed.

        Whatever the cause, I hope you and your Dr. figure it out soon and you can get some relief.


        Sending hugs,
        Amy

        Comment


        • #5
          I personally did not get any relief from my hydro. My pain complaint though was over a week after it was over I was still really tired. The pain was pretty much the same as before after a couple of days but I was tired all of the time. I agree with everybody else though if you're not feeling better tomorrow I would def go and see the dr and tell him that he needs to try something else because you're still in so much pain. Hope you feel better soon.
          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

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          • #6
            After my procedure, I was in pain for 5 days. I got no releif from it. The posibility of infection is huge after this procedure in my opinion, since you have those pin point bleeding areas for the "bugs" to get into. I refuse to have DMSO due under any circumstances since I don't beleive in putting chemicals into my body(industrial solvent). There is also a chance for permanent damage like Jen said it could penetrate too deeply. I guess the refusal for DMSO is the Maine girl talking, it is helpful in lots of people. Hope you feel better soon!

            Erika
            IC diagnosed officially via cysto/urodynamics 1/26/07

            Grade II Endometriosis diagnosed via lap 12/11/07

            "Fall down seven times, Stand up eight."

            "Life is a tragedy for those who feel and a comedy for those who think."

            Current Treatments:
            Interstim Since 5/25/07!
            Birth Control

            Comment


            • #7
              Hydro is iffy!!!

              I have had three hydrodistentions done over a 5 year period. The first one worked pretty well, I had relief for about 8 months, with just a little breakthrough pain. The second I had relief for 6 months, and still with just a little more preakthrough pain. The last one was done about 3 weeks ago and I have had no relief I am now taking fentanyl, and vicodin for pain, and not really in a big rush to have another one done.
              I hope that as the time progresses that you begin to feel better.
              All of my hydros didn't include the DMSO because I also refused that course of treatment, don't want those harsh chemicals in me, maybe it is a Maine thing, after all.
              Started Vaginal Valium Suppositories April 2014
              Hysterectomy April 2003 (for abdominal pain),Diagnosed with IC August 2003
              Diagnosed with Pelvic Floor Disorder 2004,Had right ovary and fallopan tube removed 2005
              Diagnosed with diverticulosis 2006,Interstim December 2006,Home Instillations 2007-not effective
              Diagnosed with Fibromyalgia November 2007,Appendectomy February 2008,
              Interstim repair December 2008,Removal of the Interstim August 2011,
              6 Hydrodistentions from 2003-2009 Diagnosed with restless leg syndrome March 2014
              Diagnosed with Raynaud's Syndrome November 2013
              Ambien 5mg for sleep.
              Elivil 50 mg at bed
              Lisinopril 20mg in AM
              Effexor 225 mg
              Oxycodone 10 mgs 2 x a day for pain
              Baclofen 20mg 3x a day
              Phenazopyridine 200 mg as needed
              Omeprazole 20 mg at night
              Lyrica 450 mg daily
              Requip .50 mg at night
              Ketorolac 10 mg as needed for migraines

              Comment


              • #8
                I had a hydro done last Monday. Today is the first day I have had any bladder pain. I was in bed for the rest of the week with a spinal headache. I don't seem to have to go as much. Just wish I could come up with what caused todays flare. Well I need to do my PT exerrcises and that might work. I hope you feel better soon. If you don't I would be sure to check with your doc.
                Interstitial Cystitis Stomach problems
                diastolic dysfunction
                vascular insufficency of left leg
                pelvid floor disorder
                hypothroidisim
                asthma
                bread cancer - 5yrsl. remission
                swollowing difficulty
                fatigue
                lots of doctors
                lots of med.














                Keep your eyes on the Lord and he will direct your paths.

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                • #9
                  I am someone who is helped by both hydros and DMSO. That being said, my Dr. would never put DMSO in my bladder while doing a hydro - that is like pouring acid on a wound. After a hydro I wait at least 3-4 weeks until my bladder is healed before using DMSO again.

                  Comment


                  • #10
                    Well, I thought I was doing better today just a little burning, but now tonight it has gotten worse again and now I am running a fever. I will call tomorrow, I should have done that today. You are right though my bladder fells like someone threw alcohol on it while it was in a flare up. I will never do one of those again.
                    Marlene
                    MARLENE

                    Comment


                    • #11
                      If you have a fever, chances are you have an infection & you need to see a doctor first thing in the morning. If your pain is unmanageable tonight, a trip to the ER is in order! You don't want infection to go up into your kidneys!

                      If you have an infection, it will be hard to know if the cysto/hydro helped yet. Hopefully once on antibiotics, you'll have a better idea.

                      Hang in there,
                      Sending a hug,
                      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


                      • #12
                        Kadi is right --- a fever almost always means infection for me.

                        And I have never had DMSO until at least two weeks after a hydro. It would be too irritating.

                        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.

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                        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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                        • #13
                          What does DMSO stand for?

                          As a newbie, I have to ask,......what does DMSO stand for?

                          Thanks!

                          Gina
                          Gina

                          1993 - Stage 4 Endometriosis
                          2004 - Complete hysterectomy for Endo

                          **Haven't been able to work since Oct-05 due to***

                          2005-2006 - Steroid induced Cushings
                          2006 - Panhypo-pituitary - on full hormone replacement
                          2007 - Diagnoised with IC
                          - Originally had a very difficult time with taking Elmiron as it lowers an adrenal hormone called Aldostrone, which cased me to have an adrenal crisis. It's taken a year, but I've been able to work up to taking 300mg a day and after 4 months I am FINALLY in remission!!!
                          - Using Aloe Vera Capsules daily and it really helps.
                          2009 - Diagnosed with an "en plaque" meningioma brain tumor. Thought to be putting pressure on my pit gland so that it doesn't receive signals from brain. Scheduled for endonasal surgery at UPMC (Pittsburgh) on Dec 10, 2009

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                          • #14
                            I had one Hydro and it didn't help, but one needs to wait a couple of weeks to determine the results. (My first hydro was my last.) They do help some people, but I have never heard of doing a hydro and DMSO at the same time. Has any one else?

                            Sorry you are in so much pain. I hope the doc can treat you symtoms and get them under control soon.

                            Take care,
                            ads

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                            • #15
                              Are you feeling any better?
                              http://www.TheCraftyEwe.etsy.com

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