I just don't understand...Help..

[elena84]

Hi, my name is Helen, 25 years old and my bladder problem started 2 years ago, when I was in the car and I had to hold my urine for an hour... I had this unbearable pain, because I had been drinking one glas alcohol earlier and my bladder filled immediately...I was too shy to get out of the car to pee, so I sat there suffering for 50 minutes or so..It was horrible... Then 5 days later it all started...frequency, urgency and nocturia. The bladder pain came after 2 months I think, not immediately. Before the problem, I only have had one UTI when I was 19 and in general my bladder was functioning just great. Anyway, urine culures were negative, I did a cystoscopy not under general anesthesia and everything was normal,my bladder held 350 ml, no glomerulations, nothing but when I went to another doctor and did a cystoscopy under general anesthesia he said he was more than 50% sure I had IC. He wasnt sure, and this drives me crazy. The tissue examination showed no mast cells and a low grade chronic infection..Both cystoscopies showed that the bladder triangle was inflammated and swollen, but they said it is normal, many women have it. Now Im on Atarax 3 weeks now, but it doesnt seem to work at all. Im driving myself crazy. As far as Im reading on the net, many people who have IC, have a history of many UTI's and I don't. My question is: Could I have developed IC by holding my urine in, despite of being in terrible pain?? It was so stupid of me, I'm blaming myself every day... Should I do a urine test for mycoplasma and ureaplasma? Does this have anything to do with IC? And what about trigonitis??? Could I have it??  Thank you so much...

[David A Burks, MD]

HI, We don't understand exactly what triggers IC.  The theory is that there is an initial injury to the bladder that damages the lining, allowing the toxic substances in the urine to get inside the wall of the bladder initiating inflammation, pain and more damage. A number of things have been noted by history to cause this initial injury including a bad infection, or an injury during surgery to the bladder (during a hysterectomy).  Other people report no dramatic or obvious bladder insult and the symptoms just start out of the blue.  Lots of people get caught holding their bladder but don't get IC, so don't beat yourself up over the incident. It's unclear exactly why you got IC.
I'm not sure exactly what your Urologist meant by trigonitis.  Women normally have an estrogen effect on the bladder base called "squamous metaplasia" which is normal.  I'm not sure whether this is what your Urologist means by a normal finding or was there indeed a chronic infection/inflammation of the wall of the bladder on the trigon.  I would need to see the pictures but I take the Urologist at his word that he thought the finding was normal and not the cause of your symptoms. The role of mycoplasma and ureaplasma in causing IC is unknown.  Many people have the organisms and if found on culture can be treated, but rarely does the IC resolve.
I agree with you that your bladder problem started first, and the pain caused the muscles in your pelvis to tighten up and be a new source of pain.  Pelvic floor physical therapy and the TENS unit helps relax the pelvic floor and relieve the spasticity in the muscles. Studies show this treatment really works.  Hopefully your symptoms are now under control.  Good Luck

[elena84]

My urine stream is very weak, I have to pressure my bladder in order to get the whole urine out...Even if I have just been to the toilet, this irritating feeling in the low part of my bladder is there...It just wont go away...It is so hard just to walk without having this feeling down there...Im 99% positive that theres something wrong with the triangle..When the bladder fills, sometimes this feeling gets milder, sometimes it gets worse...I just dont know what to do about it...
Another question that I wanted to ask is this: are glomerulations only typical of IC patients or can they be found also in bladders with no IC? Because in the DVD from the cystoscopy, the doctor showed me the only one glomerulation I had and said to me, "here, there you are, this is typical of IC, so..."

[elena84]

Thank you for your support, Lena.. Its just so frustrating not to know what your problem is!! IC or trigonitis? All the doctors Ive been to dont seem to care about my inflammated bladder triangle (its like a big white pus, I saw it on the DVD from the cystoscopy), they say trigonitis is something normal, it doesnt cause any symptoms.. What Ive read is that it can cause similar symptoms to IC ... What I dont know is whether the urine tests in trigonitis also come out negative for bacteria... I also read that trigonitis is healed by cauterizing the triangle...How can I tell my doctor to search for trigonitis? By taking tissue from the triangle, because in the cystoscopy he took tissue from the rest of the bladder (I suppose)... :(

[Lena1957]

After reading your post I couldn't help but feel your pain. I have had IC for 6 yrs and I feel sure I can tell you that you did not cause IC by holding your urine for 50 minutes :)  I am 52 yrs old and my problems started when I was 19 yrs old. first it was "female problems" I dealt with that until one of my ovaries ruptured and had to have an emergency hysterectomy @ age 26.  Then one day @ work I had this terrible pain in my lower back. It came from out of no where. After weeks of going to the doctor I was first told I had a UTI and from there we went to bladder cancer. After having a Cystoscopy, the URO said I didn't have cancer, but my bladder looked like cottage cheese and he burned all that off. I spent the next two years getting bladder instillations and eating pain meds. I was to the point that @ the end of my work day I "crawled" in my door. Finally I got wise and went to see another URO. He told me up front I was going to have to give my job of 20 yrs up. After going through grueling bladder instalations over a 6 week peroid. I wasn't getting better. My new URO was just learning how to treat the "Symptoms" of IC. He was straight up and said there was no cure. But he has controlled my IC and set me up with a pain management doctor. He was the best thing to come into my life. I'm not saying this will all happen to you. Doctors learn more every year about IC. I have an Interstem and a stimulator implant to help with the pain and the need to potty. I also take a lot of pain meds. I have came a long way and I go through stages of what I call "remission" there are times that I don't have any pain and that makes me wonder about going back to work or picking up on a hobby I had to give up. Then "wham" out of no where it starts all over. Sorry to have written so much. But there are a lot of young women and men that have IC and know very little about it. I have researched and learned any and every thing that comes out new. If you have any thing you would like to know just E-mail me @ ***@****.

Lena1957

[elena84]

What I forgot to say is that back in January I went to see a therapist who specialises in pelvic floor problems and she told me I had a very tight pelvic floor, which I couldnt relax at all. I started doing some exercises she showed me and also TENS ans immediately I was doing great, just like before the problem. Since then the symptoms are milder, the pain has decreased very much, sometimes there is no pain at all. Still, I dont think that my bladder problem could have been triggered by my pelvic floor dysfunction, this is very unlikely right?