Good Luck on your appointment, I saw 3 different specialist, and no one knows what this is, had all kinds of tests. I finally was given a med that completely stopped the pain, Ultram. Most Dr.s will give this, it's a mild pain pill, works on the nerve that is causing this, the closest answer I ever got was nerve damage, so there was nothing to be done. I just live with it, because the Ultram takes it Completely Away !!
It is a horrible pain, and I remember how uncomfortable it was. One thing I found for me also was to only get the TEVA brand of generic Ultram, and only CVS carries this. I have tried other brands when I lost my insurance, went to Walmart, etc..but the brand the carry did NOT WORK !! Just FYI. It is appx 38.00 for 200 pills a month, my dosage , I don't need this many, but I wanted as many as possible to stock up, because you never know when they will cancel a drug, or change it, and this problem for me was debilitating, I could barely walk after a month or so after the pain started, kept getting worse.
So if this works for anyone else...get the most you can get a month..and stock em up !
I only take 2 in am and 1 before bed.
Find a good Visceral Manipulation therapist (Osteopath, Chirpractor, Physical Therapist, Massage Therapist, etc.) who can work with the bladder & ureters. Worth a try.
I am experiencing the same. It is frightening to know that your mind perceives a physical ailment that's not there.
I have battled depression and anxiety all my later life. Just when the depression and anxiety started to subside, the brain responded by giving me this. Can't win.
I have he same exact issues with acid and chemicals. Please tell me have you found a solution. What Drs u have seen? Thank you dee
I'm so happy that i've found a forum after a year of looking for people suffering with the same symptoms!
Last November I came down with a diagnosed UTI to which i was given antibiotics; it appeared to clear up with a few days. However it came back after a couple of days, and after repeating the process of: infection - antibiotic - infection returns - about 4 times, I was then referred to a specialist whom put me on 3 months worth of trimethoprim. No joy! So after a cystoscopy which showed no abnormalities, an MRI which again showed no results and various water samples that showed clear of obvious bacteria, I've been left dumbfounded by what the problem is.
I have no pain when passing water, just after - a burning & painful sensation. It's inconsistent as it's not every time i go to the loo - sometimes I can sense that before i go that it will hurt too. Sometime it hurts for only 5 or 10 minutes, other times it can last for an hour. It's not every day, but a couple of times a week. For weeks I drank only water and cranberry to see if that would ease the pain yet I have had less pain in the past couple of weeks in which I've eaten and drank as I've pleased so goodness knows if it's food or drink related. I've been checked for STD'S too and I'm clear of that and yeast infections.
In regards to stress - it seems to flare up at the most random of moments - at home or out - and I can't seem to see a pattern that suggests it's mental stress causing the problem. Could it be muscle spasms? Or polyps that have been missed in a cystoscopy?i Or even a parasite/infection somehow undetectable by the doctors? I've never cried so much in my life then in the past year due to being ill. It's effecting my uni work, part time job and sex life! Still a month before I see my doc! Pretty sure he doesn't have a clue what's going on! :(
Always make sure to preface that with 100% ( cranberry juice). If they drink the "cocktails" which usually contain 25% or less juice, any bacteria will feed off the sugars and thus be counterproductive.
Did you ever find out? I have the same symptoms :(
I have the stinging pain too - it is horrendous. I have had this a year ago and was given EUMOVATE by the doctor and it had cleared it up. However this time it didnt work - they also changed the way they make the cream that might have something to do with it (it's a steroid) .
I am currently taking:
Prelief (makes urine alkaline)
Probiotics
Quercetin (helps IC but I havent been diagnosed)
Anti-inflammatories
Marshmallow Root tea
Slippery Elm powder
Aloe vera pills
Cut out wheat and sugar
All this money spent on those but the only true relief (that provides 0 urethral spasms) is pouring cold water after urination. Also I apply coconut oil (raw). This one got rid of the burning but not those twangs of pain (feels like my urethral tube is an open sore and I just pour alcohol on it)
I also put a small piece of ice and hold it in. I am at my wits end. Ive been to the GP and they told me they couldn't help me and told me to go to the hospital. I went to the hospital and they told me to go back to the GP -.- yay NHS!
I forgot to pour a glass yesterday after peeing, and boy did I pay for it. It stung for about an hour or two. I kept going back to the bathroom just pouring cold water to make it stop (It stopped but 4 hours later the spasms were back and they were vicious)
I took AZO (ordered from Amazon). It doesnt help with the stinging!! It only numbs the burning but so does coconut oil!!
Impressive finally I could found a topic with so many people with the same or similar condition as me!!! I'm from Chile and here I've tried everything, even surgery cause after 7 years battleling with this disease I developed an hypertrophy of the urethra so I had an stenosis. My problem is not pain, only when I have crisis but that is like once per month... My big problem is that I can't stand up after I pee cause I have the urgency forever, even if my bladder is empty. I can be there sitted like for 1 or even 3 hours!!! It's a terrible thing and very limiting :(
I'll tell you what I've tried and I my different results:
Anticolinergics - no difference
Antispasmodics - no difference
Relaxing bladder muscles with pills and phisiotherapy - no difference
Homeopathy - I only got worse
Neural therapy - I had 1 day relief with direct injection of procaine into the pudendal nerves and it hurt like hell
Surgery for the stenosis - I started to pee more fluently but the sensation was exactly the same
Change of diet (no gluten, no sugar, none milk of animal origin) - I'm doing this now cause I met 2 chilean girls who improved in a 90% with this habits in 5 to 7 months
Japanese traditional medicina (Kampo), called Chorei-to: Im trying this now cause I read some serious studies (Im a medical student) about this medicine, that improved the symptons of a lot of girls.
So... let's see if some of this will work, If something works I will make my career about this and tell you all about it!!!
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If you have urethal pain - consider trigger points in your abdominal wall and pelvic floor...trigger point therapy has HELPED me incredibly. The muscles of the pelvic floor and the abdominal wall can pull on the uretha. Please consider this if you do not have an infection. Sometimes you will feel that your clothes are too tight, this is also an indication that you may have trigger points. Hope this helps someone.
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You may want to check your water. Chlorine in our water is a problem! If you can smell it, it's too much! It took me a year to figure out what was wrong with me. Dr's and tests etc. Then it dawned on me. I only feel the burning at my Urethra- my water had chemically burned my Vaginal area. First thing I do when I am experienced burning is take a hot bath, so over and over again exposing myself to the same chlorine levels. It also made my hair super this and brittle. Try adding 2 cups of apple cider vinegar. This will balance the PH
You may want to check your water. Chlorine in our water is a problem! If you can smell it, it's too much! It took me a year to figure out what was wrong with me. Dr's and tests etc. Then it dawned on me. I only feel the burning at my Urethra- my water had chemically burned my Vaginal area. First thing I do when I am experienced burning is take a hot bath, so over and over again exposing myself to the same chlorine levels. It also made my hair super this and brittle. Try adding 2 cups of apple cider vinegar. This will balance the PH
Hello, its been so many weeks since I last posted and a lot has changed - but the spasms. I gave up sugar as it's really making it worse within minutes. I went to a homeopath - only one dose so far. What it did was make my late period come and make the spasms a LOT more frequent but a lot less painful. To the point that I just ignored it and let ot hurt in the background. I also went to the hospital and they gave me Lyrica which is apparently for neuropathic pain. The doctor there thinks my nerves keep producing symptoms of a long gone infection because they are overly sensitive. It has been a week and no signs of improvement yet, the pain is still there and it's bad.. really bad. But the doctor told me to give the drug time so I will keep you posted. Its definitely affecting the muscles because I do kegels when I am in pain and it slightly alleviates it. So in addition to the homeopath the doctors and my home remedies with cold water and coconut oil (also avoiding carbs / gluten -MUCH difference from that) I will at some point go to a Physio.
Wow! I had no idea so many people had the same exact symptoms and "undiagnosed" problems as me. Until this moment I have always felt so alone with all of this and honestly thought I was either crazy or the only person in the world with these problems...I'm glad to know I'm not alone with this.
When I was 3 years old I had a urethral re implantation. My entire life i have battled bladder infections and spasms. They became so frequent that I could usually tell the difference between the 2 and knew when to get antibiotics and when to stick it out with peridium or Uricalm (it's an OTC form and for me it works faster, better, and isn't as harsh on my stomach as the Rx brand, plus it's only $5 at Kroger) Well in Sept'14 I got an extremely bad infection, the pain was unbearable, and none of the usual stuff I did helped, so I made an appt same day, got some antibiotics and in a few days I felt a little better. About 2 weeks after I finished a 10 day 2 a day run of Cipro I started getting the same UTI type pain. Long story short I went to my PCP for 4 months during which time I was given 6 different antibiotics before she finally referred me to my urologist. He said I needed to be off antibiotics for a few weeks before he could do a urine culture to determine if I really did have an infection and exactly what type of bacteria we were battling. So during those few weeks of waiting I made an appt with my GI doc because I was having major stomach problems on top of UTI type pain. She ordered a slew of tests and scans. My stomach issues were mostly a result of stress and being on so many antibiotics that it wiped out all the good bacteria. CT scan was done and that determined I needed to go to my gynecologist. Did that and he said (with NO exam and NO tests done) that I had IC and needed to take Elmiron. He also said I either NEEDED to be on birth control or have a hysterectomy. Again with no explanation as to why. While I did follow the IC diet, I didn't like his "diagnosis" so I didn't follow his advice and I'm sooo glad I didn't. I finally went back to my Urologist, culture was done and no infection. I explained to my Urologist the visit to my gyno, and he told me that you cannot diagnose anybody with IC without doing a cystoscopy, and that he had hundreds of IC patients and not a single one is on Elmiron. So in Feb I had a cystoscopy and bladder distention done and what do ya know, not a single trace of IC or any signs of the beginning of it. So back to a NEW gyno. Well I found a urogynecologist and a few days ago I had a laparoscopy, D&C, hysteroscopy and another cystoscopy all of which showed nothing and looked totally normal yet here I am STILL hurting and not a single step closer to finding the source of the pain. I feel like I've said it until I'm blue in the face. It feels just like a UTI on freaking steroids and I would rather go through child birth again (my daughter was 10 lbs 9oz delivered vaginally) over and over then to have to deal with this. It's physically, emotionally and mentally exhausting! Having no "answers" is depressing. Feeling like your doctors are just shuffling you around because it's not "their problem", is beyond frustrating not to mention my generation has ruined being able to get any type of pain meds bc of how badly they are abused. It sucks that people who abuse them have ruined it for people who are legitimately in pain. I don't want to live my life on medications with horrible side effects that may or may not work, I don't want to live on pain medications either. I want them to figure it out so I can go on living my life as I was before. Being in chronic pain for so long has changed me as a person and i hate it! I just want my life back!!
I feel your pain, I really do. You know, initially I thought oh I'll have a cystoscopy and it's all going to be diagnosed, but reading all these experiences I now do think it's going to be in vain. And what you say about painkillers is so true. I took 1 pill with paracetamol and codeine and I felt better - but I am so scared to ask for more or even taking more and tell the doctor because of all these drugies out there they are going to think I am looking for a fix and I'm making it all up (it's even worse in my area as there are a lot of government funded rehab clinics)
Read on opiates and urethral syndrome, they are very effective on pain (i read it on patient co uk)
I am on week 2 of Lyrica and it works a little when I take two together, today I had a great day without pain.
Things I have learned so far;
1.stay away from sugar
2.avoid gluten / carbs
3.COLD WATER IS RELIEF : I do something that might sound disgusting at work; I pee and then I take a full plastic cup of cold water and sort of suction it around the urethral area for 1 minute or so. Then I pour it on it and then apply coconut oil. Its a lot of work but it really does help. Trust me
4.Do not for any reason delay peeing. Half an hour is ok for me but more than that it's a guarantee for me that not only I'll be spasming but it will relentlessly burn too, for hours.
Anyone else got any ideas?