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  • Extreme pain - please help!

    I was experiencing a sharp burning pain in the urethra and vulva since December 2010. A few times I was treated for a UTI but just as often the tests came back negative. The pain usually followed intercourse with my fiance.

    About 2 weeks ago I started experiencing a really sharp pain on the right side of my pelvic area. It felt like someone was stabbing with a knife. I went into ER and they put me on a morphine drip - but it wasn't enough to numb the pain. They told me that I probably had a ruptured ovarian cyst. However, when my ultrasound came back clean they then told me I had non-sti related Pelvic Inflammatory Disease and put me on a strong course of antibiotics. During this 2 week period the pain was so severe that I only had a decent sleep for 4 of the 14 days. They other 10 days I would sleep only 1-3 hours maximum. I kept going back to the ER looking for answers and they kept sending me home. My belly had swelled up so much that I couldn't wear pants that were two sizes too large. I had blood in my urine two weeks ago but since then my blood and urine tests seem to becoming back normal every time.

    I've been referred to a gyno and a uro, but the appointments aren't for weeks or months. I've already missed over 2 weeks of work now. They had me on toradol for the inflammation but it doesn't seem to be doing much anymore. I'm starting to find a med combo that works: Oxycodone (pain) with Mylan-Zopiclone (sleeping pill)

    I'm not sure if I have IC. My symptoms are:
    1) sharp stabbing pain on the right side of my pelvic area around the bladder that started out of nowhere 2 weeks ago
    2) the pain spreads through the entire pelvic area including over the mons pubis
    3) lower back pain around the tailbone but can spread across the lower back
    4) the pain seems to be 10x worse at night, preventing me from getting any sleep without a strong pain meds and a sleeping pill. Even then getting a few hours of sleep is hit or miss
    5) these areas seems to get "hot" before the pain starts
    6) I also have vulva pain, around the urethra and pain around the vaginal opening

    I don't really have any urgency... only severe pain. I've started the IC diet am not sure if it is helping at all. I really wish I could see the urologist ASAP so I can know if this is IC and hopefully start treating it.

    I'm really depressed because I'm supposed to be starting in a new position at work on Tuesday and I can't even go to work because I'm so sleep deprived. I'm also supposed to be getting married in 3 months and I can't even think about planning the wedding. I'm considering postponing the wedding but I know that would devastate my family and friends. My fiance and I are supposed to be moving out in a house we bought in less than two months (we currently live separately with our parents). This disease (?) has messed with all of my plans and I feel like no one understands what I'm going through. I'm afraid of letting my fiance down.

    I'm not sure how to get through this. I'm SO tired and so scared. I wanted more than anything to get pregnant and become a mother in a few years but I'm not sure whether that's an option with all this pain.

    I'm only 23!!! How can this be happening to me??? Please help
    Last edited by younglove2; 05-22-2011, 06:19 AM.

  • #2
    If it is possible try to find a Uro further away from home that will see you and do the IC test sooner. That way he/she can get you on a treatment plan.
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    • #3
      One thing you might do is telephone the uro's office and ask if you can see their nurse practitioner sooner. Sometimes that will get you some attention quickly.


      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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      Sub-types https://www.ic-network.com/five-pote...markably-well/

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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]

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      • #4
        Sometimes you can get the Dr that referred you to call and get you in sooner based on the severity of your symptoms. It might be worth a try to call them and tell them the extent of your pain and ask for them to help you get an earlier appt. Also call the Drs you have the appt with and ask to be on the cancellation list, that way if someone cancels, you can get in sooner.

        I wish you the best.

        Sandra
        Link to the patient information, everything from What is IC? to Disability
        http://www.ic-network.com/patientlinks.html

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
        http://www.auanet.org/content/guidel...ent_ic-bps.pdf

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        • #5
          Just a thought

          I have had chronic PID and endometriosis, which caused a lot of adhesions. You could have adhesions pulling on your urethra and pelvic floor. Your pain and symptoms are very familiar with me. I have been there. Hang in there. Have you seen a GYN as well. Maybe a UroGyn could help you.
          Last edited by Thingone; 05-23-2011, 07:46 AM.
          Diagnosis: Endometriosis, IC, PID, PCS, PFD, PN/PNE, VV, fibro, Pelvic Adhesions, DDD, Hysterectomy at a young age. Unable to take estrogen, causes pain—extremely bad pain.

          Thankful: For all the support and comfort I receive on this site.

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          • #6
            Originally posted by Thingone View Post
            I have had chronic PID and endometriosis, which caused a lot of adhesions. You could have adhesions pulling on your urethra and pelvic floor. Your pain and symptoms are very familiar with me. I have been there. Hang in there. Have you seen a GYN as well. Maybe a UroGyn could help you.
            It's really frustrating because one day a doctor would tell me I most likely had PID and the next day another doctor would say I likely didn't have it because I didn't have the signs (normal white blood cells, no fever, no STIs or other risk factors)

            I wish I could go back to work but I have severe pain that comes on so spontaneously during the day that it almost doubles me over. I also have severe pain that comes nearly every night between 11pm and 4am, usually through my entire pelvis across my back. Even with a muscle relaxant, oxycodone and a sleeping pill I usually cannot sleep through this pain. If I do fall asleep I wake up within an hour, sweating. It's thrown off my whole sleeping and I'm a walking zombie. I also have a lot of burning/stinging pain in my vulva and the urethra.

            I truly hope this was a bout of PID and that it will gradually go away. I finished the strong antibiotics they gave me. I'm not convinced the pain is coming from my bladder, although the pain seems to start around the bladder area. I have pain through my entire pelvic area, across the pelvic bones, through my back and sometimes shooting down my legs. I feel almost like it's could be nerve entrapment but that wouldn't explain the severe swelling that I had around my belly until a few days ago.

            Could this be IC?? I don't necessarily feel any more pain while urinating or having a full bladder. I don't seem to be going to the bathroom any more than usual.

            The early gyno appointment I could get is in 2 weeks and I'm still waiting to hear back from the urologist.
            Last edited by younglove2; 05-24-2011, 10:47 AM.

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            • #7
              Younglove 2 your symptoms sound so like mine, chronic pid which has been treated with 4 courses of antibiotics, endometriosis and yet even though I've had a cysto which showed my bladder was normal, it feels anything but!

              My uro seems to think my bladder problems: frequency, pressure, constant burning (in the vaginal area I think) are all related to the gynae things going on but as nothing seems to be improving it's hard to tell.

              Anyway enough about me, how are you feeling now, any improvement?

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