Latest Blog Article: Is Interstitial Cystitis Caused by Anger? No!
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  1. #1
    ICN Member mich2604's Avatar
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    urethra feels swollen?

    Does anyone get this feeling?

    Everytime i get this feeling, it feels very raw and when i stand up from sitting, just getting up and the rubbing of my clothes against the urethra feels like rubbing salt on an open wound.

    Ive looked a few times with a mirror(sorry for TMI) and each time i get this feeling.....the inner labia is spread wide open.

    I just dont know what to make of this.........my guess is that the urethra swells and the inner labia opens and for some reason i feel this.

    I also dont know if maybe it is the bladder swelling?

    thanks


    Lyme disease diagnosed 11/05
    vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
    IC diagnosed with hydro/cysto- may 17, 2006

    Over growth of lactobicilli found 8/07 treating with doxy.

    Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

    8/22/07- was able to get my first speculum exam, with pap

    Strep D found in bladder with United medical labs May 2006
    2 strains of strep in stool culture 9/06
    high Strep ASO titre found 10/06

    NEW MED

    Capsasin cream-once a day for 20min,
    BUt wont lie it does burn

    About to start valium supositories for PFD

    Trigger point injections- oct 07

    Current meds:
    Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
    Zanaflex 2mg
    IC and low oxalate diet, no sugar diet
    Xanax for appointments to help relax me since they cause so much pain

    Started PT 3/07, PT has really helped me in ways I never knew that it would

    Meds ive tried
    Lyrica
    Klonopin
    Singulair
    Claritin
    Pyridium
    Soma- can barely tolerate half a pill
    Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
    Estradiol cream
    Urelle- caused worse bladder spasm and retention

    Various antibiotics for lyme which caused yeast and made the IC and VV worse

    waiting for the next chronic illness to pop up


    "Did you know?
    Every 15 seconds,
    a person is
    diagnosed with
    interstitial cystitis."
    Source: J. Dimitrakov, MD

  2. #2
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    I had that too!! Baking soda has helped it tremendously. I usually had the burning with it, too.
    Last edited by izazen; 02-22-2007 at 05:25 PM.

  3. #3
    ICN Member mich2604's Avatar
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    did you drink the baking soda or did you soak in it?

    thanks


    Lyme disease diagnosed 11/05
    vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
    IC diagnosed with hydro/cysto- may 17, 2006

    Over growth of lactobicilli found 8/07 treating with doxy.

    Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

    8/22/07- was able to get my first speculum exam, with pap

    Strep D found in bladder with United medical labs May 2006
    2 strains of strep in stool culture 9/06
    high Strep ASO titre found 10/06

    NEW MED

    Capsasin cream-once a day for 20min,
    BUt wont lie it does burn

    About to start valium supositories for PFD

    Trigger point injections- oct 07

    Current meds:
    Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
    Zanaflex 2mg
    IC and low oxalate diet, no sugar diet
    Xanax for appointments to help relax me since they cause so much pain

    Started PT 3/07, PT has really helped me in ways I never knew that it would

    Meds ive tried
    Lyrica
    Klonopin
    Singulair
    Claritin
    Pyridium
    Soma- can barely tolerate half a pill
    Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
    Estradiol cream
    Urelle- caused worse bladder spasm and retention

    Various antibiotics for lyme which caused yeast and made the IC and VV worse

    waiting for the next chronic illness to pop up


    "Did you know?
    Every 15 seconds,
    a person is
    diagnosed with
    interstitial cystitis."
    Source: J. Dimitrakov, MD

  4. #4
    ICN Member KathrynPInk's Avatar
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    Feb 2007
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    North Carolina
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    90
    When I am in a flare, a bad flare, I definitely feel like my urethra is swollen and hurt. That has always been one of the most common issues for me along with the terrible pain and frequency, pressure. I have always felt that my urethra was a separate* organ almost at times (I know it is not really) but.....not being able to distinquish what was bothering me more.
    I take tums and drugs that reduce inflammation..(it helps a bit). I also drink more, and more water and the swelling is not as noticable.
    Sorry you have that too. it sucks.

  5. #5
    ICN Member
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    I have that symptom right now. I never had it before, but I developed it after my cysto/hydro/biopsy done 7 weeks ago. They also had to dilate my urethra because the first cystoscope wouldn't fit through, because my operative report says they had to go from a 22 French rigid cystoscope to a 26 French cystoscope. I hope this gets better soon, I cannot stand it anymore. It's hard to drive and sit in a normal position. Did anybody else get this symtom after their cysto/hydro AND/OR urethral dilation?

  6. #6
    ICN Member Roxie2007's Avatar
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    Houston, Texas
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    HI! I've had that terrible pain for almost 2 yrs........IC for almost 30. I've tried everything my IC dr. was willing to try to calm the pain. Then my husband read about MSM gel here on this website and sent away for it for me. That was 2 weeks ago. I used it 11 days ago now and I now have no urethra pain! It's amazing! It works as an anti inflammatory and heals. Amazing stuff! Maybe you should give it a try. Good luck! Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

  7. #7
    ICN Member
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    do you use the dmso 70% gel? Sorry, I'm new to this, and I just looked up the gel on jacoblab.com, but I don't know which one to order. I want to try it, I hope it is safe. Thank you.

  8. #8
    ICN Member mich2604's Avatar
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    SMC- YES my urethra felt 5 times it size atleast after the hydro/cysto.

    I bled a lot afterwards and had to stay overnite while they irigated my bladder...i was cathed with a 3 way foley catheter....and I had to take percocets because it kept pinching the urethra......i was so afraid to even move!!!

    I swore i was damaged for life but that very bad swelling went away for me....eventually. It took me atleast 3 months before i was feeling semi normal, but i have to say I never had bladder spasms or pain until AFTER the hydro/cysto.

    I also was told i had swelling in the trigone area of the bladder where it meets the urethra.

    The MSM gel sounds promising, i will have to look into that.


    Lyme disease diagnosed 11/05
    vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
    IC diagnosed with hydro/cysto- may 17, 2006

    Over growth of lactobicilli found 8/07 treating with doxy.

    Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

    8/22/07- was able to get my first speculum exam, with pap

    Strep D found in bladder with United medical labs May 2006
    2 strains of strep in stool culture 9/06
    high Strep ASO titre found 10/06

    NEW MED

    Capsasin cream-once a day for 20min,
    BUt wont lie it does burn

    About to start valium supositories for PFD

    Trigger point injections- oct 07

    Current meds:
    Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
    Zanaflex 2mg
    IC and low oxalate diet, no sugar diet
    Xanax for appointments to help relax me since they cause so much pain

    Started PT 3/07, PT has really helped me in ways I never knew that it would

    Meds ive tried
    Lyrica
    Klonopin
    Singulair
    Claritin
    Pyridium
    Soma- can barely tolerate half a pill
    Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
    Estradiol cream
    Urelle- caused worse bladder spasm and retention

    Various antibiotics for lyme which caused yeast and made the IC and VV worse

    waiting for the next chronic illness to pop up


    "Did you know?
    Every 15 seconds,
    a person is
    diagnosed with
    interstitial cystitis."
    Source: J. Dimitrakov, MD

  9. #9
    ICN Member
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    So, did you eventually get rid of the irritation/pain in your urethra after about 3 months? Or do you think it damaged you permanently? I am so scared right now that this will never get better...

  10. #10
    ICN Member mich2604's Avatar
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    It did get much better. Soaking in baking soda sitz baths helped me somewhat. The pain I have now is much different , its not as swollen and isnt everyday like it was after my hydro.

    My theory was it takes awhile for the tissue to heal since we use it everyday.

    hang in there!


    Lyme disease diagnosed 11/05
    vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
    IC diagnosed with hydro/cysto- may 17, 2006

    Over growth of lactobicilli found 8/07 treating with doxy.

    Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

    8/22/07- was able to get my first speculum exam, with pap

    Strep D found in bladder with United medical labs May 2006
    2 strains of strep in stool culture 9/06
    high Strep ASO titre found 10/06

    NEW MED

    Capsasin cream-once a day for 20min,
    BUt wont lie it does burn

    About to start valium supositories for PFD

    Trigger point injections- oct 07

    Current meds:
    Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
    Zanaflex 2mg
    IC and low oxalate diet, no sugar diet
    Xanax for appointments to help relax me since they cause so much pain

    Started PT 3/07, PT has really helped me in ways I never knew that it would

    Meds ive tried
    Lyrica
    Klonopin
    Singulair
    Claritin
    Pyridium
    Soma- can barely tolerate half a pill
    Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
    Estradiol cream
    Urelle- caused worse bladder spasm and retention

    Various antibiotics for lyme which caused yeast and made the IC and VV worse

    waiting for the next chronic illness to pop up


    "Did you know?
    Every 15 seconds,
    a person is
    diagnosed with
    interstitial cystitis."
    Source: J. Dimitrakov, MD

  11. #11
    ICN Member
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    I live in a van and a shop between Canada and Texas.
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    56

    there's a pinecone in there!

    Oh, the urethral pain is my number one IC symptom!. I too get that weird swelling where the end of the urethra actually pokes out of the pedundal area and teh inner labia are all turned outwards. Beieve it or not sometimes is really helps me to put an iceblock between my legs and really SIT on in to kind of PUSH my urethra back up into my body. SOmetimes I feel like it has detached from my bladder and is going to fall out of my body. I stand up and I can feel it woosh downward and HURT! AAAH.

    no pain meds touch it. I feel like someone has put a pinecone in there and once I get comfy I can sit for as long as I like so long as I don't MOVE at all. (smiles) I really notice it as the WORST during my period.

    hope you feel better today

  12. #12
    ICN Member KathrynPInk's Avatar
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    The imflammation does subside in my case. I would not use anything that said DMSO for a million dollars and I lterally mean it. That stuff made me more inflammed after the distention and this is when I was going to an EARLIER uro who was not as smart as the one I have seeing for 12 yrs. I think DMSO is awful.
    Maybe some dissagree about this stuff, but DMSO made me worse and more swollen....I now have different treatments that work after a bit for me. But during a flare SOME of us are gonna feel that swollen feeling! Hang in there..it will get better. Stay on strict diet an drink lots of water. Atarax has helped wiht the inflammation for me. Dr. Evans in NC has the right attitude and works with you intil you get better. he also respects you and the feelings you have about certain treatments. Excuse my French, but DMSO sucks! It hurt me.

    Lots of love,
    Katheryn

  13. #13
    Support Leader Sarojini's Avatar
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    I also would never use any DMSO product again after having a terrible experience with these instillations way back when. I ESPECIALLY DO NOT CONDONE USING ANY DMSO PRODUCT WITHOUT A DOCTOR'S SUPERVISION. The material is quite caustic and you could really hurt yourself -- I work in a lab and DMSO is used there as an organic solvent for things that do not dissolve in water; it is a nasty product of the wood pulp industry and in the lab, must be used with precautions like chemical hoods and gloves.
    ****
    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.

  14. #14
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    Thanks for that info on DSMO. I was actually going to try it by myself, even though I see my doctor on Tuesday. I wouldn't have gotten it in the mail by then anyway, but thanks. I will not order it for now, I will wait and see.

  15. #15
    ICN Member KathrynPInk's Avatar
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    Mich,
    Your "raw" symptoms sound as if it is vulvudynia related ...possibly? Of course, I am not a physician, but the tender rawness just sounds very close to it. I know i have had some problems with rawness and sensitivity; I actually chalk some of the "outside" symptoms as having very light, thin skin, with many reactions to chemicals that touch my skin! Who knows? I am still wondering why so many of us are so sensitive to chemicals, drugs and foods.
    I sometimes feel that I am a mess----- but to a stranger, I look so normal and not health challenged! Ha! If they only knew.
    Love to all,
    Katheryn

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