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  1. #1
    Registered User ibtracy's Avatar
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    Question Attn Hunners Ulcers Patients, what does the pain feel like?

    Hi, just wanting to talk to IC patients that have Hunner's ulcers in or on their bladder. Can you describe your pain and how it differs from the "norm" IC pain? I really think my IC is progressing and I've developed some Hunner's Ulcers cause this pain the past couple months is more intense and I never get a break from it, EVER. It's more localized and centrally located in one area.

    If you've had ulcers, what do they do? Does the procedure hurt, how long does it take to heal?

    My uro is supposed to call on Monday (as he's on vacation, til then) and schedule a cysto/hydro with anesthesia so that we can see if things have changed in there or what might be causing this new pain.

    I'm just the type of person that needs to know ahead of time so I'm more prepared with what may or may not go on.

    Thanks in advance....
    Tracy K.
    Love from far away,
    Tracy K

    Current & Past Health Diagnosis(s)
    Currently suffering from 2nd Bladder Prolapse
    Interstitial Cystitis- March 2004
    Fibromyalgia 2004
    Chronic Fatigue Syndrome 2005
    Severe Pelvic Floor Dysfunction
    Irritable Bowel Syndrome
    Tension & Migraine Headaches
    Chronic/Severe Urinary Retention
    Numerous Endometriosis/Adhesions Removal Surgeries
    Pelvic Organ Prolapses (Uterus/Vaginal Walls, Bladder, & Rectum)
    Partial Hysterectomy 1997
    Ovaries Removed due to large cysts 1998
    Chronic UTI's (ongoing)
    Medtronic Interstim Unit removed after 5 months due to severe infection and unit was floating around in my lower back 2004

    Never be ashamed to ask for help when you need it.

    God will never give me more than I can handle, but sometimes I wonder if he lost track of what's he's dealt out here ???? I'm trying here

  2. #2
    Support Volunteers ICNJess's Avatar
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    I had a small hunner removed during my first cysto/hydro. To me, the pain was so bad that I was bed-ridden for a long time. This was before I was diagnosed. The frequency and urgency, bladder spasms, pain so bad that I would get flashes of heat, my face would turn red, and I would vomit from the pain. After that cysto/hydro things didn't improve to a remissive state, but I was no longer bed ridden!
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

  3. #3
    ICN Member ~*~Christine~*~'s Avatar
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    Well, the first time I got hunners ulcers it was, literally, overnight. I just went pee one day and it burned like acid so I went to the ER, than few months later I had a hydro/cysto, which showed multiple ulcers. I've never had that many again (thanks to Elmiron : )) but the more ulcers, the more pain
    For me, the symptoms of IC increase, by a lot, when I'm ulcerated. I'm actually ulcerated now and it feels like my bladder is completely bruised. Sometimes I can feel a pinching or stinging feeling where the ulcers are.
    When I get them removed, about twice a year, my IC is a lot more tolerable, I still get all the symptoms but the pain is not nearly as bad.
    Only about 5-9% of people with IC are prone to them, I think, so it's not that common.
    I hope that helped

  4. #4
    ICN Member ~*~Christine~*~'s Avatar
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    If you've had ulcers, what do they do? Does the procedure hurt, how long does it take to heal?

    Sorry, I forgot to answer that
    I get it done when I get a cysto/hydro. I think they laser burn them off.
    Since I've never had a cysto/hydro where I didn't get ulcers removed I don't know how to compare it to a regular cysto/hydro but for me it's not that bad, and after a few hours I can feel an improvement!
    When I wake-up I immediately ask the nurse to give me morphine; I think the last time I got 3 shots and she refused to give me more lol.
    It takes me about 2-5 days to get back to normal, that's mainly because the anaesthesia makes me nauseated for days, though

  5. #5
    Forum Manager ICNDonna's Avatar
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    I had mine cauterized once, but they just returned. Since I don't know what IC without Hunner's is like, I can't answer that question. My IC feels something like menstrual cramps, multiplied by 100 when I'm flaring.

    Donna
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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.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

  6. #6
    harleybluz
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    Hunner's Ulcers

    I am one of the lucky ones, as well, who has had the ulcers from the beginning. My pain feels like Donna's. Like menstrual cramps times 100. It helps when I lie down but of course I cannot do that at work so I just suffer in silence. I don't even like crying because it makes it hurt more. Luckily, mine comes and goes so I don't have to deal with this all the time and I NEVER eat or drink anything other than water without taking 2 prelief first. I don't know what I'd do without those.

  7. #7
    ICN Member
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    I saw them on my bladder pics from the cysto with hyperdistention. I wouldn't know any different really. My urologist never mentioned burning them. I wonder if it would make a difference?

  8. #8
    ICN Member susancleves's Avatar
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    Hunners Ulcer

    Hi, I just recently had cyc/hyd and had Hunners Ulcer burned off... to me it was a piece of cake. They put me to sleep, did the procedure and I woke up, went home and did laundry. No pain, no after effect at all. I had been suffering with bladder spasms, frequentcy and urgency for months, even years when I think about it. This procedure actually cured me...at least for the time being. I am back to normal now...no f/u at all, no spasms. I feel wonderful.

    So dont fret...it is a very helpful procedure.

    Hugs,

    Susan
    Happiness,

    Susan


  9. #9
    ICN Member
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    Mine seemed to cause me a sharp stabbing pain that caused me to double over.
    Symptoms started Nov 2003.
    Diagnosed Nov 2004.
    In remission since Aug 2009.

    Favorite quote: "Moderation kills." ~ Dr Caldwell Esselstyn, Jr.


  10. #10
    ICN Member
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    I just had a cysto/hydro last week where several Hunner's ulcers were removed. I noticed that the weeks, perhaps months even, leading up to that kept getting progressively worse. I was used to some level of pain and discomfort daily, but this was increasing. I agree with Donna, menstrual cramps times 100 or more. I felt bruised inside and out and movement of any kind seem to cause jarring pain. Here I am one week later and I'm feeling worse. The procedure itself went fine, afterwards I had pain but nothing crazy. My doctor cauterized the ulcers but I was told they probably will return. The day after the procedure I felt somewhat better and then things started declining. Today I have pretty intense pain, tons of pressure and in the past 24 hours I have went to the restroom 73 times.
    April 2012 -diagnosed with IC, potassium sensitivity test
    May 2012 - potassium sensitivity test, hydro/cysto/biopsy, bladder scans, ct scans, and urodynamics test. Started IC diet.
    June 2012 - diagnosed with Pelvic Floor Dysfunction and Vulvodynia, irritable bowel syndrome. Started low oxalate diet.
    July 2012 - diagnosed with Gerd/Pud, seasonal allergies, migraines, chronic sinusitis, TMJ, chronic ear infections, deviated septum, fibromyalgia and mild hearing loss. Sept 2012 - started Elmiron again, Uribel and Elavil
    Oct 2012 - Stopped the Elavil. Started Neurontin, Atarax and Vaginal Valium
    Nov 2012 - Started taking Cymbalta for fibromyalgia, Allergies of apples, turkey, beef, chicken, potatoes, peanuts, celery, ginger, tuna, green beans and vanilla. Also, dust mites, mold, pollen, trees and ragweed.
    Dec 2012 - migraines confirmed, prescribed Maxalt. Vitamin D deficient, Ergocalciferol weekly. Neurontin, Atarax and Vaginal Valium doubled. Claratin for allergies. Tramadol, Flexeril, and Dextroamphetamin
    Mar 2013 - diagnosed Celiac Disease - started gluten-free diet. B12 injections and Lunesta.
    Jun 2013 - cysto/hydro performed. Hunner's ulcers found.
    May 2014 - uterine fibroids. New Allergies to Morphine, Hydrocodone, Percocet, Codeine and hyoscyamine.

  11. #11
    Forum Manager ICNDonna's Avatar
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    Quote Originally Posted by Kecia View Post
    I just had a cysto/hydro last week where several Hunner's ulcers were removed. I noticed that the weeks, perhaps months even, leading up to that kept getting progressively worse. I was used to some level of pain and discomfort daily, but this was increasing. I agree with Donna, menstrual cramps times 100 or more. I felt bruised inside and out and movement of any kind seem to cause jarring pain. Here I am one week later and I'm feeling worse. The procedure itself went fine, afterwards I had pain but nothing crazy. My doctor cauterized the ulcers but I was told they probably will return. The day after the procedure I felt somewhat better and then things started declining. Today I have pretty intense pain, tons of pressure and in the past 24 hours I have went to the restroom 73 times.
    My suggestion is to let your doctor know that your symptoms have worsened. Any time we have an invasive procedure it increases the potential for infection --- and for me it's difficult to tell the difference between infection and an IC flare. I hope you feel better soon.


    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/patient-r...on/#icfoodlist

    You'll find my story at: http://www.ic-network.com/conditions...tories/page/6/

    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.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

  12. #12
    ICN Member
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    Donna, thank you for responding. I ended up spending all of Friday in the hospital. I was slightly dehyrdrated. I do have an infection and I passed kidney stones. There is one still in my bladder.
    April 2012 -diagnosed with IC, potassium sensitivity test
    May 2012 - potassium sensitivity test, hydro/cysto/biopsy, bladder scans, ct scans, and urodynamics test. Started IC diet.
    June 2012 - diagnosed with Pelvic Floor Dysfunction and Vulvodynia, irritable bowel syndrome. Started low oxalate diet.
    July 2012 - diagnosed with Gerd/Pud, seasonal allergies, migraines, chronic sinusitis, TMJ, chronic ear infections, deviated septum, fibromyalgia and mild hearing loss. Sept 2012 - started Elmiron again, Uribel and Elavil
    Oct 2012 - Stopped the Elavil. Started Neurontin, Atarax and Vaginal Valium
    Nov 2012 - Started taking Cymbalta for fibromyalgia, Allergies of apples, turkey, beef, chicken, potatoes, peanuts, celery, ginger, tuna, green beans and vanilla. Also, dust mites, mold, pollen, trees and ragweed.
    Dec 2012 - migraines confirmed, prescribed Maxalt. Vitamin D deficient, Ergocalciferol weekly. Neurontin, Atarax and Vaginal Valium doubled. Claratin for allergies. Tramadol, Flexeril, and Dextroamphetamin
    Mar 2013 - diagnosed Celiac Disease - started gluten-free diet. B12 injections and Lunesta.
    Jun 2013 - cysto/hydro performed. Hunner's ulcers found.
    May 2014 - uterine fibroids. New Allergies to Morphine, Hydrocodone, Percocet, Codeine and hyoscyamine.

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