Latest Blog Article: Interstitial cystitis is more of an injury to the bladder
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  1. #1
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    BURNING "NERVE" PAIN in bladder and FOOT?

    I hope somebody has had this happen before, and I hope it eventually will go away and it is not permanent damage. I am going to assume it is "nerve" pain, or sensations that I am feeling, as I have read on some other posts that some people have had this. I never had it before, until I got my cystoscopy/hydro/biopsy, which was done about 5 weeks ago. I have a nerve-type "pain" or "sensation" that is within my bladder, and it extends down my left leg, and it is mostly felt in my left foot as well as the bladder itself. I wanted to know if anybody knows if this signifies healing? I'm just really scared right now because I hope I don't have some kind of permanent nerve damage from the cysto/biopsy. It's more or less a tingly, cool/warm sensation. Thank you.

  2. #2
    Support Leader Sarojini's Avatar
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    Sounds like your sacral nerve got irritated... this nerve starts right above your butt crack in the spine, goes through the pelvis, and then branches and goes down the leg to the foot. It is responsible for some of the feeling in your bladder and also your foot... so, if one place in the nerve gets irritated (namely, your bladder area) your brain can interpret it as coming from your foot as well. Our bodies are brilliant but also silly!

    I have the Interstim sacral nerve stimulator to control my frequency from IC, and the electrical stimulation from the device can be felt in my crotch/bladder area... but also, I can sometimes feel it in my foot, tingling away.

    This shouldn't be a permanent problem for you, and will probably go away as your bladder heals up from the hydro --- but if it gets worse or doesn't go away in a week or so, definitely talk about it to the doctor!

    ****
    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.

  3. #3
    ICN Member Stacey65's Avatar
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    I had a cysto/hydro/biopsy on Jan. 5th and I also had pain in my left foot. I saw my pain management doc Jan. 30th and he said it was nerve pain he put me on 25mg of Lyrica twice a day. After about 3 days I stopped getting that pain in my foot. It's also helped with the pain in my lower back that I've had since Sept.
    Work like you don't need money,

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  4. #4
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    Quote Originally Posted by Stacey65
    I had a cysto/hydro/biopsy on Jan. 5th and I also had pain in my left foot. I saw my pain management doc Jan. 30th and he said it was nerve pain he put me on 25mg of Lyrica twice a day. After about 3 days I stopped getting that pain in my foot. It's also helped with the pain in my lower back that I've had since Sept.

    Stacey, did you have that pain in your foot before your biopsy, or did it occur after the cysto/hydro/biopsy? Thank you.

  5. #5
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    Quote Originally Posted by Sarojini
    Sounds like your sacral nerve got irritated... this nerve starts right above your butt crack in the spine, goes through the pelvis, and then branches and goes down the leg to the foot. It is responsible for some of the feeling in your bladder and also your foot... so, if one place in the nerve gets irritated (namely, your bladder area) your brain can interpret it as coming from your foot as well. Our bodies are brilliant but also silly!

    I have the Interstim sacral nerve stimulator to control my frequency from IC, and the electrical stimulation from the device can be felt in my crotch/bladder area... but also, I can sometimes feel it in my foot, tingling away.

    This shouldn't be a permanent problem for you, and will probably go away as your bladder heals up from the hydro --- but if it gets worse or doesn't go away in a week or so, definitely talk about it to the doctor!

    Hello Sarojini,

    Thanks for responding. Do you have any idea how this nerve could have gotten irritated from the cysto/biopsy? Is it just a natural side effect of the procedure that you know of? If you don't know, that is okay...I was just curious to know. Thank you.

  6. #6
    ICN Member Stacey65's Avatar
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    Quote Originally Posted by smcclafferty
    Stacey, did you have that pain in your foot before your biopsy, or did it occur after the cysto/hydro/biopsy? Thank you.
    It was after, I haven't had the pain in my foot for about a week now
    Work like you don't need money,

    Love like you've never been hurt,

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  7. #7
    ICN Member kjd's Avatar
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    Hi there
    How you feeling? If its any consolation I got these symptoms after my cysto too but I still have them a year on and will NEVER have one again.

    My neurologist said its nerve damage to the pudendal nerve which is a risk...great

    x
    Started with symptoms 2004 after a severe infection.
    Was diagnosed with IC Feb 2006 after cystoscopy.
    Diagnosed with vulvodyina and PN in july 2006.
    Dignosed with ME and IBS Oct 2006.
    Currently taking Amytriptaline 50mg, regular pain killers and birth control!
    Also doing IC diet and regular use of heat packs.
    Still struggling with IC and controling my symptoms so looking for some help

    also recently had abnormal pap, CIN III and just had LEEP done 2007

  8. #8
    I've had that since my hydro also and it now signals a flare for me. As soon as my foot starts going off, I know I'm headed for a doosie of a flare!
    My doctor refuses to believe they are related so I don't know what to do.

  9. #9
    ICN Member blue's Avatar
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    Wow, I'm amazed at the relation between the two problems. Sarojini's explanation seems plausible! Even if the doctor's don't believe you.

  10. #10
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    I know...my doctor also says the two cannot be related, because there are no nerves that travel from the bladder to the foot. I do not believe this to be true. It all started after my cysto/hydro/biopsy!!!

  11. #11
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    Accupuncture

    What you all are describing is a accupuncture meridian which runs from the toes, through the foot, up the back of the leg and into the bladder. When I have accupuncture they put needles all along this meridian. Main nerves run all along this area.
    Sammi

    Sammi

    Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
    Diagnosis: IC, PFD (both in remission)

  12. #12
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    Hi Sami...do you know if it was possible to have this nerve damaged by a cysto/hydro/biopsy? Because that is when my nerve irritation started. Just wondering if anybody knows...thanks.

  13. #13
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    Nerve Damage

    Nerve damage can occur with any type of trauma to the nerve. What is going to insult a nerve is pretty individual. It can be from surgery, a fall, childbirth, lower back injury, or surgical procedure, hysterectomy. It can be different for all of us. I once fell off a concrete wall and injured my coccyx. It was two years before it felt better and referred pain down my leg and into my bladder which became overactive.
    Referred pain can come from the pelvic floor and you would swear it was in your urethra or bladder. Referred pain is common, and that is why it is so hard to figure out where pain is coming from down "there."
    As for a cysto/hydro I cant think of anything more traumatic to a delicate bladder than stretching it to "capacity." Some studies have shown that even a normal bladder will bleed under such expansion (duh). Even shoving instruments up the urethra does not make for a happy day.
    Surgeons all have a different level of care, and skill. Bodies are all unique in what they will put up with before they rebel.
    I am 9 weeks out from a hysterectomy and my body went into an absolute hissy fit after the surgery and is just now beginning to calm down. I think my bladder was terrified it was going to be "next" and was really overactive from hysteria. Now it is starting to calm down. I am going in for accupuncture this Friday.
    Sammi

    Sammi

    Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
    Diagnosis: IC, PFD (both in remission)

  14. #14
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    Back Pain

    Right now I am having a lot of pain from the L4 and it runs down my thigh My bladder is having fits. I wish I knew which comes first (the chicken or the egg). The Uro wants to treat the bladder with instills. The PT is treating the back and the Chriropactor is adjusting the pelvis. All they can come up with is stretching and ice. The neurologist says it's refered pain, but from where???

    Well, my friends, keep up your spirits and be thankful we have IC friends who understand.

  15. #15
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    I have all the initial symptoms for IC, but am still waiting on a definitive diagnosis from my urologist, who is treating me for 2 weeks for urethritis to rule it in or out. In the past month, I've had one episode of very bad bladder pain and burning, with soreness for about a week after. One day of living with the "bowling ball" in my abdomen, and pain when bending. I've had the urethral burning on and off for weeks. I feel better after a couple of weeks of the IC diet plan, but since I have begun moving around more, I also have a terrible lower back pain. I swear it feels more like an itch than a pain, and runs through my body to the front, into the anus and the crotch area, and gets much more irritating the more I move around, or walk. Does this sound like anything anyone has experienced in relation to IC?

    Also, my husband is a great support, but I have always been the nurturer in my family, and find this awfully hard to get used to.

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