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  • Hi I am new here

    Hi I am new to this site. I do have a question I was told I have Ic last June and did the bladder instillations which were wonderful. Well I still had a lot of pelvic pain bad periods. I had a hysterectomy and thought that I would be fine. Well my pain is back worse then before my hysterectomy and the doctor wants to start the bladder instillations again. So is this something you can kind of do as needed or what? I also want to know how do you know if the pain is from your ic and not something else. My gynocologist is who I see he has never said any thing about seeing a urologist. I guess i was just wanting some insight on this anyone. Thank you so much
    I am 28 and have been married for 7years. I have two boys one is 6 and the other 2. I have worked at the same job for 10 years.

  • #2
    Welcome! I wish you didn't have IC, but this will be a great place to get some potential answers to your questions. Lots of women and men can offer insights into your condition.
    I would encourage you to get a referal to a urologist, if possible, and then depending on where your back hurts, you may need to be referred for some x-rays and possibly an mri. Back injuries sometimes cause bladder symptoms, but at the same time, your bladder and the rest of your pelvic region can refer pain into your lower back.


    • #3
      to the ICN. I am glad you found us. You can find alot of information about IC in the Patient Handbook, including info about instills. You can find the link to it at the top of this page.

      I do not take the instills, so I am not able to answer your questions about them. I am sure one of our members will come along who does have that done.

      Shopping??? Did someone mention shopping? I'll get my hat... ;-)

      Where I can be found most days.

      Link to the ICN Patient Handbook:

      Link to the IC Diet:

      IC 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.


      • #4
        I to am new to this site- I was diagnosed a couple years ago- but never had anyone to talk to. This site is amazing. I had the interstim implant in 2006. I was doing great but lately I have had alot of flares and infections along with the pain. I can only adjust the stimulation of the pulses so often because it actually will cause more pain. I don't know how many of you have tried the implant. I feel like the leads are moving on me. So now I have to go and have another cysto/hydroextension with Biopsy. Some times it is so hard to plan life when you never know how you will be feeling the next day. I am so excited to talk to people who actually understand what I am going thru..
        What doesn't Kill you makes you stronger

        Diagnosed with IC in 2004
        Endometirosis dx 2004
        Fibromyalgia DX 2006
        Migrain/headaches 2005
        IBS 2005
        Complete Hysterectomy 2005
        Interstim Implant 2006
        Depression 2006 on going

        Amy Miller
        Peoria Illinois


        • #5
          Yep, most instills can be done as needed... I do heparin/lidocaine/sodium bicarbonate instillations myself at home, and I'm supposed to do them three times a week. However, if I'm feeling good, I do one or none... and if I'm feeling bad I do one every day sometimes. I know it seems strange to be able to do such an invasive thing "as needed", but it's true

          I say if they worked for you last time, try 'em again!

          As for figuring out where your pain is coming from, if the instillations help that's a pretty good hint that it's the bladder. If you're worried, talk to your doctor and if he thinks it's something else, they can do some imaging studies to check you out.

          Amy -- welcome to the site. I also have the InterStim implant -- got it last month. So far so good with me. However, the InterStim is not meant for treating pain, only urinary frequency and urgency... so it's not surprising you still have pain sometimes. I do too, but at least I'm not sitting on the can as often

          *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.


          • #6

            Hi Mirmir and ! You have gotten some great suggestions already, I just wanted to say hello. This is great site and has so much valuable information, plus there are some wonderful and caring folks here as well! In fact, if it wasn't for the info on IC treatments I found here and the encouragement of many of the patients who post here, I don't think I would have had the knowledge or courage to keep looking for a Doctor who would truley help me. And while my progress has been slow I finally found a Doctor willing to give me lots of options. I hope you are able to see a good Urologist soon.
            Hope you find relief soon!
            IC; PFD; possible Fibromyalgia; IBS;

            Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

            I've Tried:
            three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
            Currently using:
            Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
            Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
            I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!


            • #7
              Hi thre and welcome! The people on this board are absolutely the most supportive of any people I know. And the good thing is, we know how IC effects us...we have empathy and care for you. I hope you will be a frequent visitor to the boards and know that there are many wonderful folks who will always have a shoulder for you to lean on. I do not know what I would have done without my IC friends!!! There is so much love and I tell you; knowing that there are other women who know how you feel, will be a great blessing.
              Take care dear~