It's been a long time since I signed in here... but I just wanted to report that I was dx'd with IC several years ago. It is worse at some times more than others. The IC, PVC's, Fibromayalgia, etc... combined, well life can be pretty unbearable sometimes. Thanks for all your answers & support here over the years. Not sure if this thread will get bumped up or not.
HI, I have IC and am an IC support group leader. As other here have suggested it is very possible that you have IC. If you can not find any of the information below please feel free to pm me.
Because doctors now feel that IC is actually a number of illness, it is being called IC/Painful Bladder Syndrome. The inflamed bladder can only be confirmed by an in office cystoscope in 10% of the case, because some patients have hunner's ulcers. The glomerations can only be found with hydrodestention under anesthesia, however our support group recently watched the ICA DVD by Dr. Moldwin in which he stated in some of the worst pain cases of IC, the glomerations do not appear. So physicians are getting away from using that for diagnosis.
Agood way to get an idea is to go to the Elmiron website allaboutic. ( com.) Here they have a Patient pain and frequency scale that you can take to your doctor that will help them determine if you might have IC. Though there is no cure for IC their are many treatments that can help your pain! I have pretty severe IC pain because of some additional issues, but have great coping tools and treatments that my physician and I have found help me.
There are several great sites/organizations that can help you learn more about IC.
the ICA which is ichlep. ( org)
the ICN which is ic-network. ( com)
Our support group is set up mainly to network patients and medical practitioners throughout Missouri and Arkansas, but I have tried to put a lot of articles on the board to help any patient as well.
we are
moarkic ( com ) it stands for mo for Missouri and Ark for Arkansas and of course IC
One suggestions I would make is to find a good Pelvic Pain Physical Therapist, often they can rule out a lot of other issues that might be going on along with your IC or by themselves.!
I hope that gives you some hope and direction! Please let us know how your doing
and what answers you find!
Shelly Matthewson
Private Researcher
IC Support Group Leader
Director of MOARK Interstitial Cystitis
www.moarkic.com
"And we know that all things work together for
good to them that love God, to them who are the
called according to His purpose."Romans8:28
Has either of you been to a urologist or a urogynecologist? The symptoms your having may be caused by a condition called Interstial Cystitis. There is a website devoted to this using the two initials and then *******. I hope you get some answers soon but don't rely on your general practitioners to figure it out, you need to see specialists that can do testing and get you diagnosed and treated.
what you have sounds exactly what I have, except I have been dealing with mine everyday for about a year know. Trust me I know how it feels, I am waiting on a response as well.
Try downing a lot of water, I found that that can sometimes cure the pain for about 2 hours.
Is your doctor a general practitioner or a urologist? When they testing your urine did they just do a test strip in the office or did they send it out to be cultured? If the new course of antibiotics don't help with the symptoms then you might want to see a urologist for a consultation. There are other conditions that would cause you to be urinating as frequently as you are. Don't bear down or strain with your pelvic muscles, if you have a pelvic floor disorder this only makes it worse.
I've been having the same problems for 3 months since I had a surgery when I was cathed for 2 days. At first it was thought I had a UTI but all the testing came back negative. I'm now having all kinds of urodynamic testing done and also a cystosopy to make sure I had nothing wrong with my bladder. Even though the tests are all normal the urologist has put me on a patch for bladder spasms which have helped. You don't say how old you are, because urinary problems are very common in women who are menopausal due to the lack of estrogen. There are also other conditions that can cause those symptoms. My advice is to go to a urologist and have the proper tests done so you don't end up with a chronic problem.
Ask what exact bacteria was found in your initial urine test when you tested positive for infection. It may be that the bacteria you had didn't respond to the first antibiotic. Also, get some probiotics to replace the good bacteria in your system. Make sure you don't take them at the same time you take the antibiotic as I've read it can interfere with it if taken too close together. Have you been tested for a yeast infection, as that will cause urinary tract problems too but needs an anti-fungal to clear it up. You can take it in a pill form or to use vaginally. If you have any itching or burning of the vagina or outer vaginal area that would be a symptom of a yeast infection, which can be caused by taking antibiotics that cause an overgrowth of yeast in the vaginal and it can get into the urethra and cause burning and frequency.
I hope you get some answers soon, I know how frustrating it is to be running to the bathroom so much.
Valerie