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Major flare need to vent

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  • Major flare need to vent

    I am having a terrible flare right now I guess. I have pain everyday but it is rarely this bad. I hate this disease. I don't have a serious problem with frequency, my main issue is burning pain and I am on fire today.

    I have used all meds at my disposal and am laying down. I want to know if anyone else has a problem that I have.

    Recently had to get new doctor because of insurance and she has me on Cystoprotek and says it will take 6 months or so but I use vaginal valium suppositories for the lovely pelvic floor dysfunction that goes along with this disease and my question is this.

    When I insert the suppositories I can feel pain right inside my vagina. I am sorry for graphic nature and maybe TMI but if the pain is coming from my bladder then what is this burning pain about an inch right inside the vagina?

    I don't get it. I am going to make an appointment to see her again soon and make her address this but I was wondering if anyone else has this? It is a burning pain and I think quite frankly this is where alot of my pain comes from.

    I am guessing it is the muscle pain from PFD but why does it burn so bad? Does anyone else have trouble sometimes determining where your pain is really coming from? Sometimes it is very clear I am having PFD pain or other times it feels like urethral but then sometimes I can't tell the difference cause it just hurts so bad.

    I have been diagnosed with IC - cystitis glandularis - PFD along with having had endo, hysterectomy, ovarian cysts, etc... the usual suspects.

    On Cystoprotek, Lexapro, Savella, Oxycontin, Vicoprophen, Valium Supp. Klonopin, Utira - C, Vesicare.

    In August this year will have been battling this for 5 years and only was recently positively diagnosed with the IC. Took forever and tons of MD's to figure it out.

    Thanks - sorry if wrong forum room.

  • #2
    I'm really sorry for all of your pain. I've been having a really bad flare the past couple of months, so I can really relate. It's so terrible. Sometimes it's hard for me to tell where the pain is coming from as well. My main problem is frequency, but lately I have had a lot of burning and i have been feeling like I have UTI's all the time, but the tests always show no infection, so it's just a flare. I have just starting doing bladder instillations again and they seem to be helping. I inject 20mL of Senorcaine into my bladder through a cathedar...going to start doing it nightly,and my doctor has also gave me an antibiotic to inject once a week to keep away infection. It's not fun, but it seems to be helping.

    I have not tried cystoprotek, but have starting taking desert harvest also vera capsules. Have you tried those?

    I pray that you find some relief!


    • #3
      Hi Tracy,
      I too feel your pain and hate this disease as well! I have also been in a flare up for awhile now and am miserable. I have been doing constant research lately and trying like you to find some sort of relief and answers. I have been taking Calcium Citrate(citrical) and probiotics along with Prelief and hydroxine and have heard through a friend of mine that also has IC that the Calcium Citrate is supposed to help with IC. You may want to ask your Uro about this. The doctor is wanting to put me on Elmiron but I dont want to add another drug to my regimen as Im worried about the side effects and honestly I would like to be off all meds and go with a more natural approach but I dont even know where to begin! How does the Cystoprotek work for you? I hope you begin to feel better soon and if you need to vent Im willing to listen. I'm frustrated like you. Take care! Maria


      • #4
        I just wanted to add that it's not at all unusual to not know where the pain is coming a matter of fact, that's one of the main problems with pelvic pain/IC/pelvic floor dysfunction. All of the nerves and muscles down there are all so interconnected and there can also be referred pain. The more I read and PT I have and people I talk to, it's just the nature of the beast and that's one of the reasons it's such an enigma to get a diagnosis and to figure out a treatment plan. Because it's so hard to even know what exactly is causing the problem, or even exactly where the main problem is. I would suggest finding a super qualified physical therapist (they have to be especially experienced with pelvic pain/IC, etc....not incontinence, which is what most of them do) and they could begin to help you sort this out. Contact me with a PM and we can chat in person or online through my regular e-mail if you want more information. There are good resources out there. It just takes forever to find them or/or get the appropriate medications. Have you tried any meds for nerve pain like lyrica or neurontin? I've had a lot of help with both of those. nancy


        • #5
          Tracy, I hope you're feeling better by now.

          Keep The Faith
          Rebekah - Diagnosed with IC and Hunner's Ulcers in March 2009

          Two Hunner's Ulcers were removed by laser surgery surgery Jan 15 , 2010

          Proud Mother of Jeremy Jr. Born on Wed May 4, 2011

          "For every door that is closed a new one is opened"

          The Lord's Prayer

          Our Father, who art in heaven,
          Hallowed be thy Name.
          Thy kingdom come.
          Thy will be done,
          On earth as it is in heaven.
          Give us this day our daily bread.
          And forgive us our trespasses,
          As we forgive those who trespass against us.
          And lead us not into temptation,
          But deliver us from evil.
          [For thine is the kingdom,
          and the power, and the glory,
          for ever and ever.]


          • #6
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