Latest Blog Article: New Bladder Pain Treatment In Development - IC Clinical Trial
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  1. #1
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    What are your urethral &/or bladder spasms like?

    I just wanted to ask you all what your bladder &/or urethral spasms feel like and what do you do or take for them? I'll share my experiences with what mine feel like and see if anyone can relate.
    Bladder Spasms:
    Sometimes it feels as if someone is stabbing my bladder repeatedly with a knife and with each stab my bladder tenses more and more. Other times it feels like someone has my bladder in their hand and squeezes my bladder really hard and for a long time and lets go and the bladder relaxes and then is squeezed again.
    Urethral Spasms:
    Sometimes it feels like my urethra is moving from side to side inside me, almost like it's twitching uncontrolablely. But lately (like today for example) it feels as if there are being large needles shoved into my urethra from the outside. (I hope I can make this easy to understand). It's like the needle goes uuuuuuuuuup my urethra and when it gets to the bladder it stops with an excruciating sharp pain that takes my breath, then starts all over again.

    Meds that my uro rxs for the spams: Valuim 2 mg 3x a day as needed for spasms, but it is not strong enough for these intense spasms. My uro will not up the mg of the valium, she says that 2mg valium helps other patients spasms so it should help mine. Well guess what - - I'm not every other freakin' patient and would give ANYTHING if 2 mg valium would help mine!!!!!
    But at least she will rx B & O Supposotories (THATNK GOODNESS!!!!!).
    I have used the B & O Suppositories this week and they help pretty much, but they make me feel majorly out of it
    I am barely able to work right now the way I'm feeling and I'll be here for a couple more hours and am thinking of using a B &O, but am worried I won't be able to drive if makes me feel too awkward. But if I don't use one, I will have to leave ASAP. It's on of those catch 22 situations. My spasms were getting so bad while typing this I had to say "screw it" and stop typing and went to the restroom, laid my blanket (I keep a blanket and small pillow at the office to rest on my stomach on top of the heating pad.) in the floor and used a B&O. I'll see how it affects me when it kicks in and go from there.
    Thanks to all who share your experiences with me.
    Effexor 150mg 2x
    Neurontin 300 mg 3 x
    Pyridium 3 x as needed
    Valium 2mg 3x
    hydroxyzine 50mg 4x as needed
    Lidocaine gel as needed
    Roxicodone 30mg 4-5x day as needed break-thru pain
    Oxycontin 20mg 2x day
    B & O Suppositories as needed for spasms
    Meds that didn't work:
    elmiron, Ditropan XL, urised, uromax, proced, vesicare, hep/sodium bicarb,lido instills 1x a day/3-4x a wk/ 4 x a mo.- caused too many infections, they made me flare like crazy!!
    Dxd Endometriosis '96, lap. '98 removal of endo, lap. '99 another removal of endo, lap. '00 removal of endo and left ovary, '01 got pregnant Yeah!!!
    '02 had New Year's Baby , Feb. '03 return of endo, stage 4 full abdominal hysterectomy and apendectomy, June '03 removal of endo and abcess, Aug '03 wasn't healing correctly cut me open to heal from inside-out
    Dxd w/ severe IC March '05 thru potassium test and cystoscopy/hydrodistention under anesthisia also dxd w/ pelvic floor dysfunction and vulvadynia

  2. #2
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    Elavil helped me greatly with urethra pain and spasms. I take 25 mg at bedtime. Also I use 3 capsules of marshmallow root which seems to help urethral pain also.
    Sammie

  3. #3
    Support Volunteer traceann's Avatar
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    My urethral spasms used to feel like someone reached up and pinched it - hard or, it would feel like someone reached up and yanked on it - hard, lol. Bladder spasms felt more like menstrual cramps for me, along with backache. Ditropan was a huge help to me, along with the Vistaril and my Elmiron. Ditro wasn't enough totally on it's own, and the other 2 definitely helped!
    Hugs,
    Tracey
    How do you eat an elephant? One bite at a time...

    Harry arrived 2/23/09!



    *IC 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.

    IC Diet Cheat Sheet:
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    Dx's:
    IC dx'd Nov 2004
    Lymphocytic Colitis dx'd July 2005
    Possible IBS
    Current IC Meds
    Vistaril 25mg in the evening
    Previous IC Meds taken:
    Cystoprotek - 2 caps 2x's a day
    Elmiron, 100mg 3x's a day
    Ditropan, 5 mg 3x's a day
    Others:
    Wellbutrin 150mg 2x's a day for Anxiety/IBS
    Pepcid 40mg a day for GERD
    Zytrec for Nasal Allergies
    Align Probiotic daily for IBS

  4. #4
    IC Friend nabroeker's Avatar
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    Reply

    My IC symptoms sound like yours also. I used to have uncontrollable urethra pain. I felt the twitching and a persitent burning pain at the tip of the urethra. I had really bad bladder spasms also. It would feel like the knife being stuck in or I could feel the bladder actually moving, or the sensation of cramping. I have been taking Enablex for my bladder spasms and Elavil for other symptoms, including nocturnia. My bladder spasms have been reduced greatly. In fact, I have not had one for about a week. I am also sticking to the IC diet though. This is helping also. My Elavil has been a miracle drug helping with all my pain and nocturnia. It has been a miracle how much better I have felt with these two meds. I also take Elmiron to grow back my lining, and I am hoping it works for me also. If you have any personal questions about Enablex or Elavil feel free to Pm me.
    First Symptoms -
    As a child, numerous UTI's, Kidney and Bladder infections. Diagnosed with an adhesion labia, corrected with procedure.

    IC symptoms for past seven years
    Diagnosed with IC March of 2005
    Diagnosed with IBS 2004
    Diagnosed with Endometriosis December 2007

    IC treamtments and tests- Urodynamics, Numerous Cystoscopies, Hydrodistention, Enablex, Pyridium, Detrol, Prelief, Elavil, Elmiron and IC Diet

    Laprascopy for Endomeriosis

    How I feel about IC and uro's :

  5. #5
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    This is interesting. I have urethral spasms also which range from the pinching feeling to the needle stabbing feeling. Lately this happens after I pee. GAH GAH GAH I could just scream. I talked to my uro and I talked to my general practitioner and they're like, well, you're on Elmiron, that's all we have to give you. GAH!!! It's not enough right now!

    I'm taking cystoprotek as well, which helps with the bladder stuff. But! Does anyone have any suggestions for cutting down on these urethral spasms? I've already been recently checked for UTI and STDs and all that good stuff. I tested clean. So this has to be related to my IC.

    It's worst at night because for some reason the lying down position aggravates it.

    Blaaaargh. My partner is accepting of me and my disease but I can see that he does not have true understanding of what this kind of suffering means day in and day out. That does *not* help. I'm so frustrated. It hurts. I don't know what else to do!

  6. #6
    ICN Member glassd18's Avatar
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    Oh how I can relate to this thread!@#$%^&*() Need I say more...

    My urethra is constantly uncomfortable somehow, and my symptoms move around: sometimes burning when urinating, sometimes burning without, and with urinating, the spasms in my urethra are like Traceann's, and every now and again a sharp stabbing pain that goes away pretty quick usually. The spasms are uncontrollable like an eye twitch except down there, and sort of like an alien inside my urethra. (sorry that's all I could come up with ) My bladder spasms are like menstrual cramps too, but can be more intense if I'm flaring. I am having trouble finding something that doesn't flare my bladder as I'm very chemically sensitive, but I take Ativan 1mg at bedtime so I can sleep, and it helps. All of this causes me to have hesitancy pretty badly.

  7. #7
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    Pfd

    Since my last post on this subject, I went to a vulvar specialist who referred me for internal physical therapy. I am happy to say that the burning, stinging, stabbing, spasms of the urethra are now gone. They were NOT a bladder problem or Urology problem (my uro thought they were and told me to alkalize my urine and use anti spasmotics). They were the result of pelvic floor disorder with referred pain to the urethra. I think this diagnosis and treatment are the most misunderstood by Uro's and Gyno's alike.
    I now know how to tell when its a PFD spasm and how to move or stretch to relieve it. The pelvic floor nerves go to the bladder, urethra, lower back, bowel, and lower leg. When you have a PFD disfunction pain and spasm can go to any or all of these places.
    I thought the VV specialist was crazy when she suggested physical therapy and diagnosed the pain as PFD. I went only to humor her and get a renewal on an Elavil RX. She was right, I am so glad I went, I learned a lot, and I no longer have the pain.
    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)

  8. #8
    ICN Member TexasHoney's Avatar
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    My urethral spams are more like a stabbing, stinging sensation along with burning. My bladder spams are most often a throbbing sensation along with burning above my pubic bone. My symptoms seem vary form day to day. Some days it's one of the above. Some days it's all of the above. Other time it's pressure and frequency. When I have uti's it feels like my bladder is full of hot acid. My bladder is like a box of chocolates. I never know what I'm going to get. (LOL) Of course chocolate is a major no-no for me. Tonight I am dealing with frequency and pressure and just a tiny bit of burning when I pee.
    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

  9. #9
    ICN Member Tracie's Avatar
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    I only have urethra spasms. Its only on the outside, the opening. My bladder does not tell me when I have go to the bathroom, my urethra does. I take Levbid, which is similar to Ditropan. I am so use to the dry mouth side effect that it doesn't even bother me. And I really like MSM gel, and thinking of taking the MSM pills again.
    Dx Pelvic Pain Syndrome 10/2007. Cysto/Hydro show Negative for IC

    Current Meds:
    Levbid for urethra spasms (haven't needed this for 2 years)
    Pyridium when needed
    BC pills
    Macrobid for after intercourse (haven't needed this for 2 years)
    tried and stopped Elavil because of side effects
    Ice packs are almost instant relief for my external burning/ and I love MSM gel/hydro cortizone cream
    Trigger Point injections for tender and tight Levatar Ani muscles (did not work)

  10. #10
    ICN Member glassd18's Avatar
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    Congrats Sammi on finding something that works for you. Does this mean that you no longer are suffering IC symptoms or that you don't have IC at all?

    Also if it is only nerve related pain then why does the IC diet make a difference. I still can't eat MANY things, and when I do eat something forbidden my urethra is one of the places that acts up first before a full blown flare.

  11. #11
    ICN Member Claredale's Avatar
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    That irritates me when doctors try to compare their patients with their other ones. We all are different and meds effect everyone differently, even people without IC. When I was having my spasms, I described them peeing shards of glass plus my bladder had the stabbing sensation. Sometimes it felt as if I could just push out my bladder it was so irritated and so much pressure. I found that Valium at night as well as Prosed DS has made a huge difference in my symptoms. I don't have spasms very much at all anymore unless I have just pushed my body too hard with work or any stresses. Food, except for citrus, is not an issue for me. I don't experience spasms at all during the day.

    Casi, are you getting you B&O supp from a compounding pharmacy? I havent tried to get mine refilled since they are actually being manufactured right now (supposed to start back in March...but it was November before that). Anyway, I was just wondering how you were getting your supp. They were a big help for me at night. Luckily I am functioning without them, but you never know when you might need one.

    Hope you get the meds and help you need!
    Tracey

  12. #12
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    Diet

    Diet can make a huge difference for those people who are sensitive to oxalates in the urine. Oxalates come from foods such as leafy greens and chocolate and many others. One poster here spoke of urine feeling like shards, which is a common description of what sharp oxalate crystals feel to some people in the urine. These folks may get a lot of relief from using calcium citrate in higher doses almost like a pain pill.
    Other times people have mild allergies to foods that when eaten cause the body to release histamines, for those things like Atarax or Benedryl will help with pain and flare from allergies.
    For others its yeast which can give you a flare from hell. In that case its wise to attempt to tightly control blood sugar and low glycemic index sweets.
    For most its a combination of things as each system is different. Surgery can really set some people off with PFD, or childbirth, menopause, the list can be endless.

    Sammi

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

  13. #13
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    Did it again!

    Sometimes I think faster than I write and leave off a line thinking I already did it--should read posts back to myself.
    Anyway, all those above factors irritate nerves in the system. When the nerves are irritated and spasmed long enough they kind of make a loop and spasm and inflame even without the stimulus. At that point something has to interrupt the reaction; it could be medication, it could be physical therapy, eating a diet that dont cause a reaction. Sometimes they stay calm and we think we are cured, other times they react again and keep it up and become chronic. Systems all have a different tolerance for irritating stimulus, when they have had enough, they act up. Dont forget stress and the secretion of stress hormones to really screw up your system. All of us have stress, and a lot of it in situations we are really stuck in (need a job, boss is a jerk), all this stuff plays a part in immune defense, pain, IC flares.

    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
    ICN Member glassd18's Avatar
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    Thanks again Sammi!!! I just starting journaling (after two years of suffering already) everything I do: eat, when I P, symptoms, liquids, sex, stress etc..., and I'm not seeing a food pattern quite yet. I do see some things. I know stress is for sure a killer for me. The other night I got my nails done (pedicure/manicure), and they always have those massage chairs while your getting your feet done, I had absolutely no symptoms at all after that, and ended up having a great night, and slept right through. Massage therapy is probably a good option for me, but my symptoms have returned with a vengeance again. I finally found an acidophillus supplement that doesn't flare me because it digests in the intestines, and not the stomach. I'm extremely excited about that, but I haven't seen much difference yet. Anyhow my point is is that I don't see a lot of rhymn or reason to my symptoms sometimes, and other times I do so it is really hard to figure out what flares me urethra and all. I have called my doctor to ask for a PT referral because I was diagnosed with sacroiliitis (sp?), muscle abnormality, and abnormal gait by a PT specialist last June, but had to discontinue because insurance changed AGAIN. Grrrr, and this times it's an HMO Grrrr evn more so I had to start at square one with the referral thing. I'm hoping this might help. I also was diagnosed by my uro with urethral polyps (not the type they remove). They are like little bumps that indicate there is inflammation happening. I'm using Bactrim once a day for six months, but I haven't noticed any change. My hesitancy is getting a lot worse these days, and sometimes it's almost impossible to start my urine flow because of the pinching in my urethra. Anyhow I'm a real mess!!!

  15. #15
    ICN Member crkshnks79's Avatar
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    My spasms range from feeling like a " lightning storm " that starts in my bladder and low pelvic area and just fan out , or I get the needle stabbing feeling that many of you guys described also . I noticed they are worse w my period but also if I have to pee and wait to long to do it ( even if its a friggin drop of urine !!!) or if I have one of those nights where I have the urge to constantly push then they will start too . I hope to God these spasms dont become chronic like my pain ... Id rather just be put out to pasture at that point lol


    Lauren

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