Told that I don't have I.C., Told that I do have it.. Help :/! - Interstitial Cystitis Network Support Forum

pompom · 11-24-2009, 04:07 PM

Sorry this is so long but maybe someone here can shed some light on my situation.. I've been going though nothing but hell for three months. I don't have a history of UTIs but had one about 2 1/2 years ago. My gyno gave me ABs and it went away quick and I was on my way. It was so uncomfortable tho. It started out as feeling like I had to pee but didn't really have too and it got worse and worse. Fast forward to March or this year. I started sleeping with a new BF and a month into I felt like I had a mild UTI kind just that uncomfortable lingering having to pee feeling. I saw my gyno's nurse and she ran my urine through a machine and said I didn't have any bacteria and gave me no AB.. I drank a lot and in about a week or so it went away. Then a month later it came back when I was on vacation. After I got back (about a week later) I saw PCP for this. He just did the stick test thing that showed WBC and gave me AB.. I got better but it lingered a day or so after but went away.. I knew that having sex with a new partner could cause a UTI so I thought not much of it.. We then broke up and three months after it was back.. I saw my PCP right away. He gave me bactrim for three days again and sent my urine to be cultured. Got somewhat better but not 100%. He said my test came back negative but that the lab saw bacteria but nothing grew and that my urine was cloudy. He then gave me cipro for three days.. By the 3rd day it settled down but by the end of the day after the last dose it was in full force and this time I had a constant irritation/burning/dry feeling in my urethra that is usually worse after I pee. He then gave me more cipro to take for a week and that didn't help at all. During this I got tested for STDs including herpes and hiv which came back negative. Then I went to see a Urologist. At this point I thought I had IC so I found a Dr. in NYC the specializes in IC he also has done a number of things with the IC-Network so I feel like this man knows his IC. He said I did not have IC and did a pelvic exam. He said sometimes people dont show bacteria but an infection is still there and they are not treated promptly or with enough ABs and it becomes harder to treat and gave me Macrobid for a month.. Two weeks into it I started feeling better then it got worse again and never got better again. He then did a cystoscopy but before he did a q-tip test and said that maybe I had vuvodynia but it wasn't IC because I don't have urgency and frequency. I maybe go to the bathroom 6 times a day if that. However, during the cysto there was irritation on my bladder neck.. He told me to keep taking the macrobid (my second course) and start taking elivil and it will settle down and go away with time.. Two weeks later I gave up and demanded a wider spectrum AB and saw another Uro and told her my story. She did no other tests and told me it was IC and started me on rescue instillations and told me the AB would not help. It's now been two weeks of this and Im feeling better.. However, when I began these I had just gotten the Levaquin and thought it was worth a shot. Now I'm not sure what's working.. The 5 instillations I've had, low diet (Which I been doing this whole time but got even more strict),or the levaquin? I also started PT and have been doing acupuncture and herbs for this for a month. I'm just confused because my symptoms don't seem 100% like IC or 100% like a UTI.. Can you have this without urgency and frequency? One Uro says yes and the IC expert Uro says no.. I've never been more confused in my life! I've also read about mycoplasma and ureaplasma UTIs.. I don't think I was testes for either of these. Also, my first uro says that if I was taking ABs when I got tested for STDs they would have negated the test. Are there anymore tests that should be done to rule out other things before telling me I have IC? I asked my new Uro about a PST and she said they aren't used anymore. I don't really want a hydro plus I doubt she'd do one and I doubt my other one would either cause he's pretty sure I don't have it. He can generally tell just by doing a pelvic exam. I hate doctors

icgennifer · 11-27-2009, 10:08 AM

Hi there,

I feel like I am in the same situation as you! I typically do not have urgency or frequency but I do feel like I am constantly fighting a UTI. Do you know how to get tested for the mycoplasma or ureaplasma bacterias?

I've been to a few urologists and an IC specialist in PA. The IC specialist does not think I have IC because I do not have the urgency and frequency, however 2 other urologists think I have IC because when I had my bladder biopsied it showed chronic mild inflammation.

Im happy you posted this - I thought I was all alone with these symptoms.

pompom · 11-27-2009, 06:22 PM

It can be tested by using a specific urine culture, swab tests, or blood tests. I've been looking into it a lot though and think even if I could get a dr to test me for it it wouldnt be accurate since I've been on ABs in the past two months and am still on them. I asked my uro that says I have IC about it and she said she didn't test for that kind of thing and was kind of like whatever you have PBS lets get this going so I can see my next patient. I'm going to ask my IC uro about it next week when I see him since he actually thinks standard urine tests are crap and a lot of the time they come back negative when thats not the case. He also believe that to tell some they have IC you better be damn sure they have it. It's weird because I know a lot of people have had the opposite problem where doctors don't believe in IC and they don't get diagnosed for years but now I also feel like it's the opposite as well. Some doctors are too quick to diagnose it without looking into all possibilities first. I'm currently in Mexico because my parents live here and am seeing a uro here as well. The doctors here spend way more time with their patients to figure out what's wrong instead of 10-15min like in the states. Since my mom was a CEO of a hospital in the states for years I trust her judgment.

I'm starting to feel better with everything that I'm doing. If this continues to happen I will let you know. Also, please let me know if you figure things out as well! I'm treating myself as if i'm fighting and infection and healing my bladder at the same time with doctors and alternative medicine .. I really do think IC is caused by some kind of infection... I never even knew anything like this existed until 3 months ago but I know one day I will figure this out and how to get myself healthy again. I'm 25 and have a lot of living left to do!

Diamic65 · 11-27-2009, 06:41 PM

I think you should have the HYDRO done. Its the only way to know if you have IC or not. I have had three and I was fine with it. I hope you will fine answers soon.

DIAMIC65

nottoc4 · 11-28-2009, 03:00 AM

I had the PST test done May of 2008.There is no doubt in my mind that I have IC.

***ICNDonna*** · 11-28-2009, 03:13 AM

With all the things you are taking, it would not be easy to make a diagnosis. If you've finished the antibiotics, my suggestion is to follow the IC diet closely, continue the instillations, and stop the over the counter and herbals for a few weeks to see how you do. And definitely keep a diary showing foods and drinks, as well as times you urinate and how much.

And IC patients can feel entirely different symptoms, which is one of the reasons it can be difficult to treat.

pompom · 11-28-2009, 03:31 AM

I have asked the Uro that says I have IC about a hydro or PST and she said those test were outdated and anyone that does them is outdated and going on old info. I am also fallowing the diet as well. I figure if I do all this stuff and it goes away and doesn't come back then I have my answer. If it does then maybe I can have further tests done since I wouldn't be taking ABs. It's frustrating to have multiple diagnoses and no prof for any of it. My IC uro can usually tell if someone has IC based on a pelvic exam and palpating the bladder. He said a normal person wont feel a thing, and person with an infection will feel like they have to pee, and a person with IC will be "through the roof". It makes me feel like I have to pee slightly.

pompom · 11-28-2009, 04:17 AM

One thing that I'm not sure if I mention yet is that when this happened is that I've had horrible drenching night sweats with this. This has gone away with acupuncture by removing heat from my body, but I've only had them with these symptoms, never without. This makes me think there is some sort of pathogen involved. Also, has anyone here ever gotten rescue instillations done? Would it start putting your IC into remission after 6 instillations? I know there is also sodium bicarbonate in the instillations which is baking soda and baking soda is a known natural remedy for UTIs. Also, when I do my PT exercises which are different types of kegel exercises I can feel the symptoms more which feel prickly during these and then after I'm done I feel somewhat better. Perhaps it is a PFD causing vulva pain. I'm not sure how that would explain the irritation of my bladder neck on the cysto though. However, it has been debated on which came first the IC or the PFD... Although my IC doctors says a chronic infection can also contribute to PFD, not just IC.

Diamic65 · 11-28-2009, 05:30 AM

I think your URO is wrong. I go to the best Urology Center in S. Indiana. They are not out DATED. They do HYDRO every day and I can't tell you how many they do in a week Its in the numbers.

DIAMIC65

pompom · 11-28-2009, 10:30 AM

I don't disagree with you and I would like some evidence that IC is what I have. However, she def would not do one. I doubt my other Uro would either since he doesn't think I have IC at all. My insurance would also make me pay like $1,000 in a deductible to have that done. Maybe he would be willing to do PST but idk. This is the most well I've felt in a while and I don't know if I'd really be willing to "put salt on the wound" so to speak.

pompom · 12-06-2009, 08:03 AM

The new uro I went to wasn't much help but he also didn't think I had I.C. Upon doing more research I am going to a lyme disease specialist. I had lyme as a kid and was treated with AB quickly but I wonder if it wasn't effective and it started bothering me years later. On top of the bladder problems now I've also have has raynaud's, ibs, dermatitis, fatigue, b12 deficiency, night sweats, back pain, irregular periods and anxiety/depression/irritability. Each and every one of these things can be contributed to lyme disease.