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  • What does your "PAIN" feel like?

    I just wanted to know how people describe their pain...just mostly the pain part of it, you don't have to include frequency/urgency. Thank you.

  • #2
    I have always felt mine feels like extremely severe menstrual cramps, but slightly displaced.

    Donna
    Stay safe


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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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    • #3
      My pain is pure h***
      It feels like burning broken glass or sandpaper. I have constant 24/7 pain and it hurts to sit, drive, and the pressure is intense. It has changed my life but I will not let it take over.
      Miss Bessie

      Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

      Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

      Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

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      • #4
        Mine varies so much. Sometimes I have the bad menstrual cramps like Donna describes. Sometimes mine is a very sharp shooting pain that seems to go right through my bladder. A lot of the time I have a LOT of lower back pain thrown in there just to make things more interesting Ugh!
        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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        • #5
          Christine, That is exactly the way my pain feels......
          Hugs
          Ronda

          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


          Link to Patient Handbook:
          http://www.ic-network.com/handbook/

          Diet Reference Sheet:
          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

          Meds I have Tried:
          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
          Lexapro< Bad reaction to this med!
          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

          Dx With IC in Nov 2006 with Hydro/Cysto
          Hydro/Cysto Caused Bladder to Rupture.

          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



          ICN 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.

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          • #6
            My pain feels like it is in my upper vagina. The doc said that is because the bladder is right there. I get severe burning pain and cramps and also it feels like someone scraped the inside of my bladder with a bunch of nails or something. The pain seems like it is in the bladder neck, right where my bladder meets the urethra. I also get sharp pains as well at times.
            Jen

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            • #7
              Mine varies a lot. Generally, I have an aching heaviness in the pelvis which is there most days but is tolerable. When I flare, I start cramping up and then the sharp, shooting pains come. Often, I'll get a sharp pain and a cramp at the same time and it just knocks the wind out of me. Sometimes, too, it feels like something is trying to scratch its way out of the bladder... that is the pain that wakes me in the night. Often, I have a dream that I am having abdominal surgery with no anesthesia, and then I wake up to that pain and some nausea.

              Hate IC pain!!!
              ****
              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


              • #8
                I get pain in my lower abdomen. I have pain there about 24/7. In a big flare I can hurt from Hip to Hip and down both legs to my knees. I also have Pelvic floor disorder so alot of times it wants to get into the action.
                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.

                Comment


                • #9
                  My pain started like a sharp, quick stab on my left hand side near the pubic bone. I now have that pain almost everyday non-stop, but it isn't as intense. I also get pain in my back and legs (a dull type of pain, like how you feel after walking all day), pain that feels like period cramps, just a bit lower, a burning, hot pain behind my pubic bone, and shooting, "catching" vaginal pains (I describe it as being similar to broken glass or barbed wire).
                  I do have PFD as well as IC though.
                  Rachel
                  DX's:
                  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!!

                  Comment


                  • #10
                    Originally posted by jen74 View Post
                    My pain feels like it is in my upper vagina. The doc said that is because the bladder is right there. I get severe burning pain and cramps and also it feels like someone scraped the inside of my bladder with a bunch of nails or something. The pain seems like it is in the bladder neck, right where my bladder meets the urethra. I also get sharp pains as well at times.
                    Jen
                    Yes, a lot of times mine is right at the bladder neck, where it meets the urethra, and gets worse with sitting.

                    Comment


                    • #11
                      Ouch!

                      I have constant daily pain (and pressure), which feels like an extreme menstral cramp (I've heard others describe it that way too). That's constant and seems to be never ending. Besides that, I get small daily flares where it burns and feels as though someone punched me in my bladder. Every few days I'll get a "medium" flare, where it feels like someone is dragging their fingernails over my bladder.. again and again and again. And about once every week or two, I get really bad flares.. where I can't even describe the pain. It's like acid that isn't just burning, it feels like it has literally eaten my bladder away to nothing. When I get those, I just lay in bed, in the dark, and I don't want anyone to talk to me or even look at me. I just don't want to move. Sometimes I even just live in the bathroom so I can pee every 10 minutes. Luckily, those aren't daily - and I know for some of you it is daily.. and I'm so sorry for all of you .

                      I'm definitely done trying to control this with diet alone though. I gave it 3 months, and my constant pain and pressure hasn't reduced, and my flares aren't reduced. I just can't do it alone anymore. Tuesday I have an appointment with my doctor to try and figure out a new treatment plan. So wish me luck.
                      I am Jenny.
                      "Karma is affiliated with the Neopagan law of return or Threefold Law, the idea that the beneficial or harmful effects one has on the world will return to oneself."

                      Dx:
                      -UTI's and Kidney infections: Since 6 months of age
                      -HPV: November 2005
                      -Advance high-grade pre-cancer cells found in cervix: January 2006
                      -LEEP procedure: January 2006
                      -IC: January 2007

                      Medications (Began Treatment 3/27/07):
                      -Elmiron 100mg 3 x per day
                      -Elavil 25 mg
                      -Hydroxyzine HCL 10mg
                      -Sanctura 20 mg 2 X per day (added 07/24/07)

                      Weekly Instillations @ Doctor (Starting 07/31/07 instillations will be performed by self at home - Wish me luck!)
                      -20cc Lidocaine 2% Plain
                      -2cc Sodium Bicarbonate 8.4%
                      -1cc Heparin (10,000 units/cc)

                      Comment


                      • #12
                        I hope you can get something from your doc. to get relief. Your bad days must be really bad hopefully he can get you on trac with somethinh to relief those days. I know there no fun I have been there.
                        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.

                        Comment


                        • #13
                          I am like most of you feeling like menstrual cramps. I always had severe menstrual cramps from day one.

                          Sometimes sharp shooting pains in the bladder, vagina, rectum.

                          Always 24/7 intense pressure pain in the bladder.

                          Then at times I get this pain and I cannot describe it, but when I do get it, it doubles me over and I can not move until the pain has passed.

                          Severe burning especially if I don't drink fluids for a short time.

                          Sometimes get this throbbing and pain on the outside.

                          Comment


                          • #14
                            Hope the best Jenny.

                            Sending hugs, Trishann

                            Comment


                            • #15
                              My pain varies but most of the from burning to intense pressure above my vaginal area. In my worst flares I often feel like my bladder is being slashed with razor blades and hot acid is being poured into the wounds. I also somtimes get a real bad stinging sensation in my ureathra during urination.
                              Last edited by TexasHoney; 03-23-2007, 06:09 PM.
                              TexasHoney

                              Let's keep praying for a cure.
                              IC Symptoms began in early 2001
                              Divorced : Sept 2002 (Partly due to IC)
                              Diagnosed with IC in April 2004
                              Most recent injury - Rupurtured Left Achilles Tendon
                              Wed Jan 28 2009
                              (Ice Storm Accident)
                              2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
                              Other Injuries
                              Broken Left Ankle - July 2004 ( fell off ladder)
                              Broken Left Ankle (Again) - May 2005 (car accident)
                              Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

                              CURRENT MEDS
                              Elmiron, Pyridium

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