Its always best to check exactly what the problem is but my problems started after a really nasty bout of cytitus and thrush. I'm finding gabapentin for the nerve damage in the urethra, bladder and pelvis is really helping and I'm healing very slowly.
I started having urethral pain back in August. I finally went to the doctor last week, thinking I probably had a UTI. After testing, there was no infection & the doctor wantd to run some tests (ultrasounds) this week. I started reading these posts & was alarmed that so many have the same symptoms & have not been able to get any answers. Four days ago I started taking Bragg Organic Apple Cider Vinegar- 2 Tablespoons in 8 oz water 3 times a day, and so far, no more pain!!! I will continue to take it and keep everyone updated on how or if it continues to work. As far as the ultrasounds go, I am going to save my money for now as I really think they would be inconclusive.
In December 2010 I had my right ovary removed due to pain from a dermoid cyst. Two months afterwards I started to experience severe urethra pain. My doctor suspected the pain was from a cyst on my remaining left ovary. As a result I had a hysterectomy in May 2011. After the hysterectomy my urethra pain never subsided. As a matter of fact the catheter I had in for the surgery caused me extreme urethra pain. This pain continued day after day, week after week, and month after month. It was dibilitating! It affected all apects of my life and the only thing that helped rid me of it were percocets. I went to the doctor a minimum of twice a month - begging for relief. She just kept saying I was healing from the surgery. She would not listen to me when I said there was something wrong. Finally in November I went to a new doctor who listened to my story and felt I needed to see a Urologist to get a cystoscopy. During the cystoscopy it was seen on the monitor that I had lesions/blisters in my urethra which he said were a result of low estrogen. I am now using an estrogen cream daily and vaginal tablet twice a week which is in addition to the bioidentical estrogen patch I have been on since my hysterectomy. I also started taking the slippery elm and marshmallow root supplements I read about in these posts. I feel great! I believe I had an unnecessary hysterectomy as a result of my original doctor's misdiagnosis. A high price to pay! At least I am finally feeling better and back to living a normal life. The Urologist said once it is all healed I can reduce the amount cream and tablets needed. I don't know which has helped more - the herbal supplements or the extra estrogen. All I know for sure is the excruciating pain I had for months is gone!
I also have this problem...I don't have much to add, but I guess I just wanted to put it out there because when I found this I was so happy to know it wasn't something horribly wrong with me. I've had it for about a year, and the pain comes a couple time a day usually. It doesn't last for very long either...so unlike some of the people above, I can have sexual intercourse without it being painful, but I've tried while the pain is there, and it's almost unbearable.
I decided to join/post in case anyone else who comes across this forum has symptoms that match mine.
I think the fact that people still respond to this thread despite how old it is shows there aren't many people who have urinary pain that isn't connected with infection, burning, itching, etc.
I'm in my 20s now and this started when I was 13. It has taken me this long to figure out what was wrong. I would describe the feeling as severe discomfort but I think I have an abnormal pain tolerance from what doctors have told me. I've surprised some by not showing much emotion to certain procedures, pokes, and prods.
I'm a female and my symptoms didn't match any of the norms: I have bouts of severe discomfort and depending on how it hurt I have to stand, or sit, or sit on a hard surface, or lean against something just to relieve the pressure. I feel immense pressure and that made me feel like I'd have to sit or stand a certain way. It also makes me pretty much immobile until it passes. If I walk, it's slow and incredibly uncomfortable. At times it's like something is pushing on my nerves because I jolt. I would have to pee and not be able to - I could sit on a toilet for 5 minutes or 50 minutes just waiting for a few drops to finally come out. I noticed it was worse when I was stressed. It feels better when I drink water. If I'm experiencing those bouts of pain (discomfort) then sex is impossible.
It took me years of trying to explain to doctors what was wrong to be able to articulate that. I once explained to a doctor what it was like and where I felt it in my body in what order and she asked me if I knew human anatomy. I didn't at the time and she responded that I just described the entire female urinary system.
Oh, birth control also made it worse.
So, after multiple doctors and many kinds of pills, tests, etc. Once wonderful doctor really took her time with me and discovered I have a birth defect. My urethra is cone-shaped, and it's causing all these issues with pressure. I will have an outpatient procedure: urethral dilation to hopefully correct this. After living with this so long I'm so glad to finally know what this junk is. My days of randomly having to sit down on a mall bench for hours waiting for the pain to pass will hopefully be over soon.
I think the fact that people still respond to this thread despite how old it is shows there aren't many people who have urinary pain that isn't connected with infection, burning, itching, etc.
I'm in my 20s now and this started when I was 13. It has taken me this long to figure out what was wrong. I would describe the feeling as severe discomfort but I think I have an abnormal pain tolerance from what doctors have told me. I've surprised some by not showing much emotion to certain procedures, pokes, and prods.
I'm a female and my symptoms didn't match any of the norms: I have bouts of severe discomfort and depending on how it hurt I have to stand, or sit, or sit on a hard surface, or lean against something just to relieve the pressure. I feel immense pressure and that made me feel like I'd have to sit or stand a certain way. It also makes me pretty much immobile until it passes. If I walk, it's slow and incredibly uncomfortable. At times it's like something is pushing on my nerves because I jolt. I would have to pee and not be able to - I could sit on a toilet for 5 minutes or 50 minutes just waiting for a few drops to finally come out. I noticed it was worse when I was stressed. It feels better when I drink water. If I'm experiencing those bouts of pain (discomfort) then sex is impossible.
It took me years of trying to explain to doctors what was wrong to be able to articulate that. I once explained to a doctor what it was like and where I felt it in my body in what order and she asked me if I knew human anatomy. I didn't at the time and she responded that I just described the entire female urinary system.
Oh, birth control also made it worse.
So, after multiple doctors and many kinds of pills, tests, etc. Once wonderful doctor really took her time with me and discovered I have a birth defect. My urethra is cone-shaped, and it's causing all these issues with pressure. I will have an outpatient procedure: urethral dilation to hopefully correct this. After living with this so long I'm so glad to finally know what this junk is. My days of randomly having to sit down on a mall bench for hours waiting for the pain to pass will hopefully be over soon.
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I am suddenly struggling with this and it is so frustrating.....I have started taking "Urinary pain relief" tablets from Walgreens........seems to help and they are OTC.
I have had these symptoms. They had put me on antibiotics for chronic UTI which I never had. All the cultures came back negative, but
they wanted me to keep taking the antibiotics to make sure anyway.
This has caused my bowels to be more sensitive... (yay)...
For me it turned out that my cause was a powdered ice tea from Wal-Mart..... After I stopped drinking it, my symptoms went away.
My speculation is, is that is is the aspartame within this that is causing my problems. After this episode I have been sensitive to things like Kool-Aid etc. (Not even sure if this contains aspartame or not really) If I drink one glass in a week or something I am fine. The symptoms only occur if I have been drinking it on a more frequent basis. The doctor's have done a ct scan and I have been to a urologist as well to rule out anything else. Nobody had come up with anything.
Now I just wish I had never taken the antibiotics.
they wanted me to keep taking the antibiotics to make sure anyway.
This has caused my bowels to be more sensitive... (yay)...
For me it turned out that my cause was a powdered ice tea from Wal-Mart..... After I stopped drinking it, my symptoms went away.
My speculation is, is that is is the aspartame within this that is causing my problems. After this episode I have been sensitive to things like Kool-Aid etc. (Not even sure if this contains aspartame or not really) If I drink one glass in a week or something I am fine. The symptoms only occur if I have been drinking it on a more frequent basis. The doctor's have done a ct scan and I have been to a urologist as well to rule out anything else. Nobody had come up with anything.
Now I just wish I had never taken the antibiotics.
I too have had this problem my entire life! I have been to more doctors and specialist than I care to disclose. I have had numerous invasive procedures, doctors performing unnecessary procedures, misdiagnoses (interstitial cystitus, etc.).
The urethra dialation does not work!!!!
The reality is the doctors don't know anything. I am 47 and realized last year that when I took benydrl the pain subsided. This seemed very bizare to me. So I started researching my issues and EUREKA!!! It is an autoimmune disorder. The downside is that I have tried to get in to see specialists, but they will not take me as a patient because they even don't know what it is!!! There are 4 histamines that your body produces and only two of the histamines are well researched and have medication developed specific to it. Benydrl is make in a manner that blocks all histamine which is why it works. HOWEVER, it makes you very tire the first week so I take it only at bedtime. I am not symptomatic free during the day, but my body is starting to settle down. I may start taking a half dose during the day.
My issue is so bad that if I drink or eat anything my body does not like, my bladder burns when the food hits my mouth.
Drinking mass quantity of water helps a great deal too as it dilutes anything your body does not like.
As much as I am happy to find others like me, I am saddened by it too.
The urethra dialation does not work!!!!
The reality is the doctors don't know anything. I am 47 and realized last year that when I took benydrl the pain subsided. This seemed very bizare to me. So I started researching my issues and EUREKA!!! It is an autoimmune disorder. The downside is that I have tried to get in to see specialists, but they will not take me as a patient because they even don't know what it is!!! There are 4 histamines that your body produces and only two of the histamines are well researched and have medication developed specific to it. Benydrl is make in a manner that blocks all histamine which is why it works. HOWEVER, it makes you very tire the first week so I take it only at bedtime. I am not symptomatic free during the day, but my body is starting to settle down. I may start taking a half dose during the day.
My issue is so bad that if I drink or eat anything my body does not like, my bladder burns when the food hits my mouth.
Drinking mass quantity of water helps a great deal too as it dilutes anything your body does not like.
As much as I am happy to find others like me, I am saddened by it too.
PLEASE read "Breakthrough" by Suzanne Somers. Take note of this passage by a Harvard med school Doc: On page 22-Dr. Jonathon Wright from Harvard University states this about antibiotics: "ninety percent of the time we can get rid of them with no drugs at all." He talks about a natural item we can take called D-Mannose-found in health stores-which attracts the E-Coli bacteria as it goes down into the bladder & washes it totally out of the body. He says that if taken around the clock {3-5 grams} every 3-4 hrs. for up to 2 days. He says most of the time no ab's are needed at all. The reason he says women are uninformed of this is that the pharmaceutical companies make a fortune from ab's & cannot patent sugar-so they would lose a ton of money on those of us who buy antibiotics all the time!!!!! Please try 1 of these 2 ideas & pass along to your friends. THIS HAS CHANGED MY LIFE!
I suffer from Reiter's Syndrome--also called Reactive Arthritis and one of the hallmarks of the disease is a periodically inflamed urethra. Technically this is Urethritis, but it is inflammation caused by an autoimmune response, not due to bacteria. Ibuprofen is the best thing I've found to combat it. Take at least 800 mg (that's 4 of the pills you can buy over the counter). Forget the Vicodin or other narctocs--they only try to mask pain--but the pain is caused by inflammation--so you really need an anti-inflammatory. Aspirin might work too, or Aleve (Naproxen).
If you have had any eye problems or joint pains--even minor aches and pains, you too may have Reiter's Syndrome. No cure, but it's manageable with a healthy diet and a few supplements and occasional over the counter meds like aspirin and ibuprofen. DON'T let them put you on narcotics, prescription NSAIDS or cytotoxid drugs. These will only weaken your body and make your disease worse! Trust me, I've been there.
If you have had any eye problems or joint pains--even minor aches and pains, you too may have Reiter's Syndrome. No cure, but it's manageable with a healthy diet and a few supplements and occasional over the counter meds like aspirin and ibuprofen. DON'T let them put you on narcotics, prescription NSAIDS or cytotoxid drugs. These will only weaken your body and make your disease worse! Trust me, I've been there.
I have suffered from this condition for 7 years.
Started in college during finals. Wrote most of them sitting on a toilet feeling like I had to pee. Doctors attributed it to stress. Since then, these symptoms have continued to present in both stressful and relaxed situations. This has ruined many outtings, romantic nights, work days and even lazy afternoons. Here's a few things that seem to be working:
- To eliminate symptoms right away (takes 20-30mins). Drink as much water as possible (at least three bottles) and take two advil while sitting on the toilet so you can let your urethra relax. Grab your phone and play angry birds or eat dinner while sitting someplace new. My friends and family are used to it now!
- The doctor prescribes me months worth of the anti-biotic macrobid on each visit. It allows me to self medicate when symptoms present and saves me hours upon hours of sitting in the waiting room every year. I take two when symptoms present and then one every 12 hours for a few days.
- I found almost an entire year of relief by taking zinc pills in conjunction with high does vitamin C tablets and 2 tablespoons of applecider vinegar twice a day for a few days. It was amazing...no idea why it worked. Paid for a study online to get this recipe of pills and liquid...maybe there's something to it!
I have noticed that symptoms are more likely to present when:
- I am a little dehydrated
- I drink caffine
- I drink/eat anything with super heavy dye
- I'm stressed
- After sex
- Sometimes they just miss me and like to say hi randomly too.
Hope this helps!
I have found that a small amount of Lavendar & Tea Tree essential oils mixed provides me with some relief. I am, however, just as frustrated at the lack of cure as everyone else.
Hey guys.
I am a 19 year old girl with the same problem. I had a UTI that lasted for like 2 months and now i am left with still feeling the same pain. I have had an ultrasound of my kidneys and bladder and that was normal. I got these little red pills for pain that are kind of helping. Basically I have been feeling ok for the past few days and I want to offer some suggestions.
-8-16oz of ORGANIC 100% Cranberry Juice. Find this in the organic section.
-Marshmallow Root Tea. Boil 1/4 cup marshmellow root with 2 cups of water. drink throughout the day.
-Marshmallow Root Supplements. Take one a day. 2 hours before or after your regular pills.
-Tea Tree Oil.
-Ask for the little red UTI pills from your doctor.
-I have recently seen AZO on TV. It apparently has been helping MANY people like us. Check it out.
I am a 19 year old girl with the same problem. I had a UTI that lasted for like 2 months and now i am left with still feeling the same pain. I have had an ultrasound of my kidneys and bladder and that was normal. I got these little red pills for pain that are kind of helping. Basically I have been feeling ok for the past few days and I want to offer some suggestions.
-8-16oz of ORGANIC 100% Cranberry Juice. Find this in the organic section.
-Marshmallow Root Tea. Boil 1/4 cup marshmellow root with 2 cups of water. drink throughout the day.
-Marshmallow Root Supplements. Take one a day. 2 hours before or after your regular pills.
-Tea Tree Oil.
-Ask for the little red UTI pills from your doctor.
-I have recently seen AZO on TV. It apparently has been helping MANY people like us. Check it out.
DONT GIVE UP. YOU CAN FIGHT THROUGH THIS.
Hey I'm portuguese, so forgive my english. I have just the same symptoms than some of you. I suufer from thes disease since last 4 months. It is killing me. I already did a few tests, no UTI, no stones in my kidneys. I feel like a burning just after peeing, while peeing not so much. And it remains for hours. My penis hurts when i squeeze it. It hurts most on my spongy body, maybe due to my urethra. It is always cold and hard while its flaccid. HELP MEEE! what can I say to my doctor in order to help me? He does'nt do a clue of what's happening with me. I'm always frustrated, please
I forgot to refer, when I get worst from this I get more and more quickly tired in my workouts. Can this muscular fatigue be related?