Interstitial Cystitis Community
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Avatar universal

Not sure what to do, can I get help?

I've seen my PCP, gynecologists, and Urologists and none of them can give me answers. They are all "hesitant" to officially diagnose me they say because all my test results come back normal. I have painful urination, pain in the urethra, urinate multiple times a day including getting up at night to urinate...it gets worse after intercourse and for menstrual cycle, and Im basically displaying all the classic symptoms of a UTI but without it ever getting better. They've treated me for a UTI 6 times in just the past few months and none of the treatments work.I even fix my diet, added in cranberries, upped my water intake, and all that did was made me need the bathroom more! I still have all these painful flare ups randomly that last about 3-5 days, and I get them about every other week. They make it hard to focus on school, hard to focus on work. When Im in pain, all I want to do is take pain pills, and sleep and I can barely be away from the bathroom, and all I can think about is how much pain Im in! I went in to the urologist and he took a camera and looked inside my bladder and that looked normal as well. Ultrasounds normal too. Most likely, they said, it could be either Endometriosis or IC, but the urologist says that the treatments for IC can be difficult, and having IC can be difficult so therefore he doesn't want to diagnose me with it, he would just rather keep prescribing me random pain meds...Im frustrated! I want to solve the problem not just the symptoms and I dont know where to go from here! Im tired of living my life in pain like this, and Im tired of calling in and having nurses telling me I simply have a UTI when I know its not the case! Do you have any suggestions? Should I be insistent on starting the oral medication for IC despite the doctors hesitations? I can't simply call into work and miss out on school all the time, these flares happen way too much and its making my life impossible! I cant keep living off of pain meds either because its getting expensive and I feel like its not very good for me to keep taking a bunch of over the counter drugs all the time.
3 Responses
7567066 tn?1392072586
I was in your shoes about seven years ago, and it certainly sounds like IC to me.  The BIG question is, though, is whether or not you have a positive urinalysis when you have these alleged UTI's.  Have they told you whether or not you have there is bacteria and/or blood in your urine?  If so, you may be suffering from chronic UTI's, not IC. With IC there is no actual infection, and it is more inflammation and erosion of the bladder wall.  I have, and still do, suffer from both and the former is a much better prognosis.  The thing with IC is that there is no cure, just management of symptoms, and it is a very hard and painful road.
You may be getting these UTI's from sex, in which case this issue needs to be addressed.  When I was having this issue in my 20's, I was prescribed antibiotics post-coitally (ie., after sex).  I would take a single dose of Macrobid which prevented any infection from starting.  Also, you may just be built in a way that causes bacteria to enter your urethra more easily, so washing beforehand and afterwards with a tea tree-based soap or any other anti-bacterial soap might help, as well.  Google how to prevent bladder infections, and you'll find good tips for women built like us.

Again, the big question is regarding the results of the urinalysis.  I would ask for another appt with my Urologist to find out the specifics of this.  It really isn't good enough for him to simply prescribe pain meds -- he needs to get to the root of the problem.  If you get nowhere with the Uro, try and  find a good naturopath who is really knowledgeable about bladder health.

Let me know what happens, and feel free to ask any questions or simply vent.  I know how painful and disruptive these issues are.

All the best.

Avatar universal
No there was no bacteria found in any of my tests. Everything came back clear, but they kept insisting it was still a UTI because I was experiencing UTI symptoms, which was confusing me. I wasn't understanding why I was being put on antibiotics if test after test there were no bacteria found. It's all very frustrating for sure.
7567066 tn?1392072586
From my own research, experience, and diagnosis, multiple bacteria-free urinalysis results, plus chronic UTI symptoms = IC.
You may have the beginnings of the disease, or a mild case of it, in which case, the cystoscopy (camera in your bladder) may not reveal all that much.  The IC Network website has excellent resources, particularly if you're in the US, so you may want to start there when you begin your research.  If you are able, a second opinion from another Urologist is important, as well.  Having said that, you may want to simply start treating yourself through diet, etc.  Also, there is a natural supplement called CYSTA-Q which calms and alkalizes the bladder, and I have had great success with it for pain-related symptoms.
I think that you should start the IC diet (listed on the IC Network website) which is basically a low-acid diet (no coffee/tea, spicy foods, acidic fruit, no soda, etc.).  Although helpful for UTI's, cranberry juice is really hard on the bladder as it contains high levels of Vitamin C.  There are a bunch of different forums that aid in learning about natural remedies for IC (IC Puzzle, IC Hope, ICN). Catherine M. Simone wrote a few books on this topic, as well, and they are worth checking out.
Once you do have a diagnosis, there are some treatment options, however, there is no cure,  I had installations done by my Urologist, which made things way worse, so I would avoid that route.
Unfortunately, this is a disease without a cure, so you will need to be pro-active and do your research.  No one things works for everyone, so there is a lot of trial and error.
Definitely start with getting a second opinion, the IC diet, and the Cysta-Q.  I hope this helps, and be sure to stay in touch.
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