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Possible IC - hydro

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  • Possible IC - hydro

    I found your site and wondered if any of you out there could help. This site seems like such a good one. My uro suggested I get a hydrodistension to rule out IC. However, I have fibromyalgia, and I wondered if any fibromyalgiacs out there could run down their experiece with this procedure. One of the uros I saw said he often does this without anesthesia. Is this common? Anyway, if anybody with fibro is out there, or if anybody wants to give me info, I sure would appreciate it. I void about 8 times in a 24 hour period, and do not get up in the night to urinate. I have tense pelvic muscles
    and bladder pain off and on. No pain when I go, just pain about ten minutes after.
    Thank you in advance KathyZ

  • #2
    Hi Kathy,

    to the board. I have fibro along with a whole host of other diseases and problems. I had my cysto/hydro under anesthesia in the hospital OR and I really would not suggest being awake for the procedure. The only real problem I faced after the procedure was that I was extremely sore and in pain from them moving me around on that OR table. After I was asleep they put my feet up in stirrups, and it felt like I'd been twisted like a pretzel. I had some bladder pain afterward too, but it was manageable with pain meds. I am thinking about having another one done soon because I did eventually get some relief of my symptoms from the hydro.

    If you haven't checked it out yet, take a look at the patient handbook, the link is a the top of this page. You might look at the diet section and see if changing your diet helps to alleviate your pain.

    I'm glad you found us..this is a great place with lost of friendly, and knowlegeable people!

    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.


    • #3

      I definitely recommend having this done under either spinal or general anesthesia -- you will likely find it quite painful otherwise.

      I also have fibromyalgia, and afterwards, I was sore all over for a few days. That was partially from the fibro and partially from the particular paralytic drug (paralytics are used to make intubation possible and to keep you still during the procedure) that was used. If they use succinylcholine, you are more likely to be sore because of the mechanism of action of that drug.

      As for bladder pain, mine was kept under good control with pain medication, but I did have some for about 48 hours after the procedure.

      You may also want to ask your doctor about pelvic floor dysfunction, or PFD. You'll find information about this all over this site, and there is a special forum devoted to it (just scroll down on the main forums index 'til you find it). The tight pelvic muscles you're talking about sound an awful lot like PFD -- I have that too, so I know it can get pretty darn painful!!

      *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.


      • #4
        My uro tried getting me to do this in the office too, I was like over my dead body!!! He took a step back & said okay we'll schedule your outpatient procedure. I've heard of too many horror stories from others being forced or talked into this & the pain they experience it's horrible.

        I had the Hydro & Cysto do get my diagnosis. Hope this helps
        [FONT="Comic Sans MS"]
        Medically diagnosed Post Menopause 9-13, unsure for how long! Have: IC, IBS-C, arthritis, carpal tunnel, hypoglycemia, RLS, seasonal sinusitis, depression, anxiety, infertility, hormone imbalance.

        Please read Screaming to be heard by Dr. Elizabeth Vliet. I do deep cleansing breathing & relaxation morning & night along with doing Yoga everynight now, it's been a huge blessing for my body! Born & raised in Michigan, relocated to Oklahoma in 9/09. Please Don't stop anti depressants or mood stabilizers "cold turkey"!

        Jen Meier Cascaddan on Facebook

        Married for 21 years, have 2 cats that are my "boys"


        • #5
          I have never had hydro. I think all of the post I have read have had outpatient testing, not in the office. Cysto is done in the office and I had no problems with that test.
          TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
          My Helpful Hints for Home Instillation:

          Institute of Female Pelvic Medicine (J. Dell, My MD)
          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


          • #6
            I have fibro and IC. I would not have the hydro done without general anethesia. It caused me pretty bad bladder spasms and the general pain from being handled during surgery and Sandi and Jen mentioned.
            It can be helpful to have the hydro done.
            Faith is not believing God can; Faith is believing God will!