My gp could never understand why I burn after urination about 30 seconds after but not during
the burn can last over an hour before dying down a little back to my normal pain ache ,it also causes hot flushes and only calms with deep relaxing of the bladder :x
Also does anybody notice sleeping or lying on thee stomach worsens symptoms rather than lying on back
Age:33 | Onset Age:19 | Symptoms:burning urethra, deep sore stinging around the perineum, dribbling | Helped By:when flare starts deep relaxing over a toilet to let out dribbling urine, hot bath, rubbing a heat cream on the perineum, Tens with a pad on the perineum, running, medication (solpadol) for pain. Current treatment: PT. | Worsened By:sitting, stressing over it, ejaculation, sometimes alcohol but I risk it. Been feeling a lot better last 6 months about 85% with a few flares lasting about 5 days. No longer having PT. Stretching every other night and I believe time is also a big factor for me
I dont get any burning, but for me, I find that urinating actually brings back the symptoms of frequent urination. For example, the more I go, the more I feel I need to go. Once I have been, I get the feeling that I am desperate to go again, and this lasts for about an hour. If I can ignore this, the feeling eventualy goes, and I can last a good 4-5 hours without going again. Also, if I have a hot bath or shower, the feeling comes back. I havent a clue why, can anyone shed any light on this, or does anyone else get similar? Could my urine actually be irriting my urethra perhaps?
Age: 33 | Onset Age: 32 Initial Symptoms: Frequent urination Current Symptoms: The odd feeling of frequency but not much else Helped By: Not thinking about it, hot bath, red wine, light exercise, Bowen technique seems to help, getting on with my life Worsened By: catastrophic thinking, worrying things will get worse, feeling depressed, reading websites too often! Work! Sitting in work all day isn't good!! Current Progress : Since 1st Sept 08, no pain!!! :)
Mine is the opposite-my burning usually begins when I start to urinate then dies down latter in the stream. I experimented with Valium for a week and noticed my symptoms were less severe. I didn't want to get hooked on it so I stopped.
I find that sleeping on my side helps-I usually feel better in the morning than at night.
Staying away from carbonated drinks and citrus helps. It was my impression that the pelvic muscles are responsible for the burning.
Started: 15 Aug 07 "Birthday present" Onset extremely swollen prostrate problems following a sinus infection, which developed into burning urine- 50% better, relaxing, diet. Pain after ejaculation. Worsen by:stress, beer.
I agree with gary that irratation in urethra causes you to keep going. Shower does same thing to be too, its crazy. isn't there something that people with IC take to coat the bladder and stop irratation. Gary I think frequency is goingto be biggest challenge. Some poepl may think a little frequency n big deal but it disrupts evey part of your life. I would trade a little pain for frequency!
Age 32, onset 32 Onset Aug 07- frequency was main problem in the beginning-really bad. Now 1 to 2x per night when frequency flairs up. Sore and tight lower abdominal muscles. Occasional burning after bowel movement and full feeling. What helps: Healthy diet(this is huge for me) Started drinking super greens supplament and almost going totally vegetarian to get body more alkaline, starting Prosta-Q, quercetin/zinc tablet in morning helped frequency problem I believe. Massaging abs and doing stretches helps calm down frequency when it is acting up. Wine or vodka after long day. Flexeral and melatonin at night. Swimming and light weights. .5 of Elavil every other day helps with frequency and healing process. Trying to stay positive and not stressing over this!
At least for me, I think both my post-urination and post-ejaculation burning are caused by trigger points in the anterior levator ani. Tim Sawyer hit those right on the money when I was at the clinic in August and he perfectly reproduced that symptom- more acutely than I'd ever felt it before. I'm still working on being able to treat the anterior levator ani effectively myself, but, come to think of it, I haven't had any post-urination/post-ejaculation burning to speak of after that week at the clinic 2 months ago. So, check out the anterior levator ani- that's my advice. And three hearty cheers for Tim and the whole SP crew!
One point of clarification: I've never had any burning during urination while I've been suffering from CPPS, though I did used to get that intermittently some years ago.
Age: 36 | Onset Age: 29 (Summer 2005) Main Symptoms (all intermittent): penile/anal/rectal/perineum pain/numbness/tingling/coldness, LUTS, ED | Helped By: duloxetine (Cymbalta), topical benzocaine, occasional benzodiazepines, hot weather, hot baths, understanding friends & family, pushing myself to be more sociable and active, psychotherapy (mostly CBT), diaphragmatic breathing, relaxation, meditation (concentration and mindfulness), adequate sleep | Worsened By: cold weather, stress, inadequate sleep, prolonged sitting or standing in place, walking uphill, heavy exercise, erection/ejaculation (sometimes)
Last But Not Least: I am not a medical/health professional of any kind. This is not medical advice.
Levator Ani Syndrome (also known as levator syndrome and proctodynia) is episodic rectal pain, caused by spasm of the levator ani muscle. The etiology is unknown.
Symptoms include a dull ache high in the rectum and a feeling of constant rectal pressure or burning. The pain may also be felt in the low pelvis or perineum.
The discomfort may be relieved by walking or pelvic tightening exercises similar to Kegel exercises. Other treatments include massage of the muscle, warm baths, muscle relaxant medications, and biofeedback. Electrical stimulation of the levator ani muscle has been used to try to break the spastic cycle. Injection of botulinum toxin A has also been used.
Variants of levator ani syndrome include proctalgia fugax (fleeting pain in the rectum) and coccydynia (pain in the coccygeal region). Proctalgia fugax and levator ani syndrome have not been found to be of psychosomatic origin, although stressful events may trigger attacks
Age:33 | Onset Age:19 | Symptoms:burning urethra, deep sore stinging around the perineum, dribbling | Helped By:when flare starts deep relaxing over a toilet to let out dribbling urine, hot bath, rubbing a heat cream on the perineum, Tens with a pad on the perineum, running, medication (solpadol) for pain. Current treatment: PT. | Worsened By:sitting, stressing over it, ejaculation, sometimes alcohol but I risk it. Been feeling a lot better last 6 months about 85% with a few flares lasting about 5 days. No longer having PT. Stretching every other night and I believe time is also a big factor for me
have to agree with you on this one give me frequency over pain any day
When a person is not in pain he does not walk around all day thinking I'm not in pain but when one has chronic pain the thought of not being in pain controls your life
Age:33 | Onset Age:19 | Symptoms:burning urethra, deep sore stinging around the perineum, dribbling | Helped By:when flare starts deep relaxing over a toilet to let out dribbling urine, hot bath, rubbing a heat cream on the perineum, Tens with a pad on the perineum, running, medication (solpadol) for pain. Current treatment: PT. | Worsened By:sitting, stressing over it, ejaculation, sometimes alcohol but I risk it. Been feeling a lot better last 6 months about 85% with a few flares lasting about 5 days. No longer having PT. Stretching every other night and I believe time is also a big factor for me
Yes, Graeme, I think "levator ani syndrome" is one of those things that people are now realizing falls under the constellation of "CPPS" or "pelvic myoneuropathy" (BTW, had a doctor comment that he liked that name, as others have related here). The Wikipedia description of symptoms and treatments seems awfully familiar, doesn't it? Though I think the Kegels that article mentions are something we should stay far away from!
Age: 36 | Onset Age: 29 (Summer 2005) Main Symptoms (all intermittent): penile/anal/rectal/perineum pain/numbness/tingling/coldness, LUTS, ED | Helped By: duloxetine (Cymbalta), topical benzocaine, occasional benzodiazepines, hot weather, hot baths, understanding friends & family, pushing myself to be more sociable and active, psychotherapy (mostly CBT), diaphragmatic breathing, relaxation, meditation (concentration and mindfulness), adequate sleep | Worsened By: cold weather, stress, inadequate sleep, prolonged sitting or standing in place, walking uphill, heavy exercise, erection/ejaculation (sometimes)
Last But Not Least: I am not a medical/health professional of any kind. This is not medical advice.
Over the past 10 plus years I have had it all, and I can definitely say that I would take the pain over the burning that comes on after urinating which in my case is also followed by an intense feeling like you need to keep trying to urinate. My whole life revolves around going to the bathroom and I am usually so overwhelmed by fear every time I use the bathroom that this burning is going to happen. I have even had near blackouts as I have been urinating due tho the fear of the pain. Worst part is I would do anything to get this out of my life and I have had physical therapy in the past, but it made the burning come on so bad that I had to quit, and it scares me that I have been letting this go on for so long that treatment maybe a lot harder for me instead of those lucky enough to get treatment early enough. I may not have had the other pains as bad as a lot of you, and this burning isn't like a little sting while you urinate, it comes on afterwards and would almost drop me to my knees but the worst thing I could do is sit still. I have had to pace the house for hours chain smoking trying to get things to calm down and thats only to be followed by having to urinate again. My life would be great if I just didn't have that symptom. Not to scare anyone with this symptom, it rarely happens all the time so intense, but I am still fearfull and pray every time I go to the bathroom.
Age:33 | Onset Age: 20 | Symptoms: burning urethra after urinating, followed by rush to urinate again, rectal pain after a bowel movement sometimes, frequency. | Helped By: Pyridium and Ativan | Worsened By: stress, sitting and unknown reasons.
GARYS- do you think that perhaps being so uptight about it and worrying and anxious is making things worse? Can only be making the muscles even more tense in that region... just a thought.
Age: 33 | Onset Age: 32 Initial Symptoms: Frequent urination Current Symptoms: The odd feeling of frequency but not much else Helped By: Not thinking about it, hot bath, red wine, light exercise, Bowen technique seems to help, getting on with my life Worsened By: catastrophic thinking, worrying things will get worse, feeling depressed, reading websites too often! Work! Sitting in work all day isn't good!! Current Progress : Since 1st Sept 08, no pain!!! :)
calguy wrote:I agree with gary that irratation in urethra causes you to keep going. Shower does same thing to be too, its crazy. isn't there something that people with IC take to coat the bladder and stop irratation. Gary I think frequency is goingto be biggest challenge. Some poepl may think a little frequency n big deal but it disrupts evey part of your life. I would trade a little pain for frequency!
Yes there is! It's called Prelief.
Age: 32 | Symptoms: Twingy pain/muscle spasms in groin area (gone), tingling sensation at tip of penis (has resolved as of now), urinary frequency (resolved as of now), thicker/decreased amount of semen (resolved as of now). Makes better: Stretching, Relaxing pelvic muscles, moment to moment relaxation, not sitting with legs crossed, Elavil, quercetin. Makes worse: Sitting, stress, more than one orgasm/day, constipation, manual labour
Garys them symtoms you describe are exactly mine that intense burn after passing water and then the need to keep going is awful it makes you hot flush and very sensitive there are times where you can lock yourself in the loo for over an hour.
The need to keep peeing when this happens comes from in my opinion the muscles trying to relax to stop the pain.If you stand above a toilet and totally relav your bladder to you keep dribbling you can get yourself to relax the muscles out of this intense state.
Luckily it does not happen that often for me triggers for this are Alcohol especialy going to bed when my last alcholic drink was less than 1 hour ago as the bladder fills back up and while asleep I get woken by this nightmare pain ,also if I have sex on the night I have been drinking beer this always brings this on. I have not had drunk sex for years
Then sometimes it can just happen anytime out of the blue.
I use a tens machine when desperate which can help this pain. search my posts or tena and you will see my thread
Age:33 | Onset Age:19 | Symptoms:burning urethra, deep sore stinging around the perineum, dribbling | Helped By:when flare starts deep relaxing over a toilet to let out dribbling urine, hot bath, rubbing a heat cream on the perineum, Tens with a pad on the perineum, running, medication (solpadol) for pain. Current treatment: PT. | Worsened By:sitting, stressing over it, ejaculation, sometimes alcohol but I risk it. Been feeling a lot better last 6 months about 85% with a few flares lasting about 5 days. No longer having PT. Stretching every other night and I believe time is also a big factor for me
calguy wrote:I agree with Gary that irritation in urethra causes you to keep going. Shower does same thing to be too, its crazy. isn't there something that people with IC take to coat the bladder and stop irritation. Gary I think frequency is going to be biggest challenge. Some people may think a little frequency n big deal but it disrupts every part of your life. I would trade a little pain for frequency!
Yes there is! It's called Prelief.
Well, Prelief is supposed to make the urine less acidic so that it irritates the bladder less. Elmiron is supposed to boost the bladder coating. You could try it, but large randomized controlled trials have shown that it's not much better than placebo. I'm not sure it's even supposed to have an effect on the bladder. Bladder instillations (which you can read about on the IC Network site) can do similar things to Elmiron, but are supposed to be more powerful.
One drug you might consider is Pyridium Plus, a lower urinary tract anesthetic. It's not a long term solution, though, and it will turn your piss red. You'll have to avoid public urinals unless you want people to faint when walk by
Started: Spring 2003; high urinary frequency and pain associated with bladder filling; urinary hesitancy; pubic/prostate/perineal discomfort; Helped by: trigger point therapy, Afrin nasal spray, Cymbalta, hydrocodone (small doses), distraction. Makes worse: sex.
Is anyone still using Pyridium? I wonder why it isn't more widely used since the urethral burning seem so common. For me, it is my main symptom, along with the frequency.
Age: 41 Onset Age: 27 (dec 2006)Symptoms: Urethral burning, muscular pain and soreness around the base of my penis, perineum and muscles around my sitbones. Frequency, urgency, dribbling, general discomfort in the pelvis, decreased libido, tight levator ani (according to PT) and occasional levator- and sphincter spasms. Sometimes ache in penis, especially when erected. Latest addition is testicular pain (and epididymis). Also excretions of clear (prostatic?) fluid throughout the day as well as secretion in my urine. Varying power of urine stream. Redness on tip of penis and ballsack.Helped By: Positive thinking and controlling anxiety Worsened By: Stress, lack of sleep, heavy training (especially abs and legs), catastrophizing over this condition
Hacksquat wrote:Is anyone still using Pyridium? I wonder why it isn't more widely used since the urethral burning seem so common. For me, it is my main symptom, along with the frequency.
I tried it early on in my onset...maybe 4 months into it...It did nothing...
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I encourage anxiety prone UCPPS people to consider L-Theanine Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
