urethral pain flare-ups, nausea, and generally blah!

I have same suptoms-I have bee researching heavily to find out what is wrong...I feel its an infectin that theyare not detecting-I am also concerned about cancer...the silnt killer like ovarian..I need to get better fo my little boys..I have several cat scans scheduled. I hadone a few months back and cystoscopy--I have lost 20 lbs an have had a lymph node at base of neck and hairline enlarged the are gong to biopsy. I ned to know what is wrong so I can get help-my arm hurts-my thighs twitch,I am naseous and I hate to eat--used to love to entertain and cook,now I cannot stand it. I thought possible fungal infection or deep roote infection that they cannot detect--there are places tht do broth culturing of urine and then tell you of infections they find-I believe united health labs in washington. I need to rule out cancer firsr. I also pee all the time-but on zithromiacin to see ifnode goes down-and it has cut down on my nighttime uriantion--also my periods are lighter and brownish-I am so confused

HI GUYS
IT SOUNDS LIKE YOU ALL HAVE IC INTERCISTITIAL CYSISTITIS...IM LIKE 99.9 PERCENT SURE. IM NOT A DOCTOR BUT AFTER LITERALLY SEEING LIKE A DOZEN DOCTORS WITH ALL THE MENTIONED SYMTPOMS ABOVE, LOW AND BEHOLD ITS IC AND I HAVE VULVODYNIA AS WELL....

Hello Everyone
I have today returned from hospital having had a flexible cystoscopy. All my symptoms were as most of yours...no infection but chronic urethral pain etc etc. Even though the consultant numbed the urethra with topical anaesthetic, i almost fell off the bed in pain as the tube went in! Oh he said 'you do not have a happy urethra!'
i'm sorry i cannot be more specific with what he said afterwards; but I was dizzy with pain and couldn't focus properly, but the essence is this...he thinks that it may be hormone related. I am 49, had a hysterectomy 20 years ago and have never had HRT until two months ago. He said that hormone imbalance can cause oversensitivity to the nerve endings and
then i missed a load of what he said but apparently he is putting me on some drug that used to be used as an anti depressant back in the fifties here in the UK as it helps to block the nerve sensors. Also some gel with is hormone based which will have to be applied to the entrance of the urethra twice daily.
Now this chap was the most senior consultant in the hospital and whilst he's heard of these symptoms he didnt really know what it was. He said 'well we need to see if we can make you more comfortable and I think these drugs could help' then he said i'd havet oreturn in six weeks.
I tell you what ladies....it may be that there is something in the water we are drinking or auto-immune probs.
my instincts are telling me to go to a herbalist or acupuncture or I may even have a closer look at Bach Flower remedies..They can be applied topically and the book is called Body Mapping. If i learn anything more, i will be back on hear to tell you all. My thoughts go out to all of you. This is a horrible chronic condition. Maybe we all need to be sending out some meditative healing to each other.

caro40, it's been a year since you posted this so I hope that you will get my reply. I have been searching the internet for more than 6mths trying to find anyone with these same symptoms, I actually thought I was the only woman suffering from this strange and painful condition.

I had a hysterectomy (still have ovaries) in 09, this pain began approx 3/4 months after. My symtoms are remarkably similar to yours and the other ladys except I haven't really noticed if the pain is worse after urination. I will go several months and be fine but when I have an episode it will also last several months. As of now I have been in pain for nearly 2 mths. I have also had a cystoscopy, checked for bladder cancer, ovarian cancer, treated for a UTI that I didn't have, ultra sound, small traces of blood has been found in my urine since the condition began. The pain is directly in the bladder area and will sometimes expand to the right or left side and urethra pressure/burning. Do you have bloating also? I definitely do. I also feel like the others that if I would just have an orgasim I would feel better but there has been no such luck. I would love for you to let me know if there has been any change in your condition. I have no idea where to go from here, I can only pray and trust God for a miracle.

i know how you feel i have had tis ic desease for 15 years and its getting worst. i cant work anymore due to not being able t satand or sit any length of time. i take an unreal amount of pain meds and it doesnt help.

I did exactly the same thing When I was 15 I had a UTI but I didn't dare tell anyone so it went untreated to the point that I was weeing what looked like pieces of bladder and blood. I STILL wouldn't tell anyone so I waited until it went away by itself. I was really ill and found it hard to get my wee out afterwards.

I'm now 29 and I have suffered with "water works problems" ever since. I often wonder if that first fateful episode is to blame for the burning, spasming, aching I deal with now :(

I hope you find an answer as there are lots of us suffering from the same thing with no clue what's wrong or how to treat it.

Hi i have been 14 yrs with unbearable urethral swollen pain.  I have CONSTANT orgamic horrible terrible pressure and after i orgasm i keep still for  a while and still does nothing it builds up again.  Constantly feel like its going into a uti.  I take alot of natural things to stop uti coming.  I cant work its all day everyday.  Drs here in Australia are hopeless and im the only one here that they have ever heard of with this horrible orgasmic pressure.  Its the WORSE feeling i have ever felt.  Id rather go through labor with my 11 pound baby anyday.

Never heard of any other girls with this orgamic symptoms drs here think its strange:-(

 ***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use

Marshmellow root tea

Try Marshmellow Root Tea from the health food store.

I am curious if you have ever had relief from this. I am experiencing his very thing right now...and no answers.

I have the same problem and we are the same age. Orange juice sends me into a full blown uretra attack. Try taking 5 mg of melatonin when you feel pain, with a glass of water. I have no idea why this works for me, but melatonin has been a lifesaver.

Hi Natalie I don't know if you are still experiencing this as your post was a while ago but if you are it sounds like you might have an infection which is not being detected by standard cultures. They are labs in the US - Pathogenius or United Medical Labs which can do a DNA or broth culture to check for bacteria. Focus Medical Clinic in the UK can also do this. Treatment options include high dose long course of antibiotics (though these aren't always without their own side effects), appropriate herbal remedies like oil of oregano, uva ursi, grapefruit seed extract, D-Mannose depending on bacteria, ozone therapy into the bladder, and physical therapy. Physical therapy is important as after so long with symptoms the pelvic floor can become overly tight which contributes to some of the discomfort. Wishing you and everyone here the very best of luck xx

I have IC. Makes me so depressed at times. Urologist recommended no coffee which helps heaps. Dr put me on hiprex which fights bacteria. It helps enormously. Take for two weeks at onset of flare-up.