Hi All

**Laura0911** · 12-07-2009, 06:55 AM

I have not been diagnosed with IC by a doctor, but I have every single symptom listed for this disease and I have suffered with this for the past 11 years.
I come from a small town with only one urologist and he basically told me I was nuts. Ever DO and MD I have tried put me on antibotics even though there is no sign of infection in my urine, and when I tell them the antibotics don't help they keep giving them to me anyway. So I have taken to diagnosing myself.
I have tried the i.c. diet, and exercise, cystoprotek, D-mannose all to no avail and have figured it out to be my birth control pills. I recently stopped my pills (2 months ago) and had a horrible flare that has lasted for almost the entire second month. I was able to go back on the pill and like magic my flare is tolerable, to the point it's almost completely gone.
My husband and I went back all the years and every time I was pregnant or changing pills I would have a flare. I still have flares when I'm on the pill, but they only last a day or two and then the go away for months at a time. So I am totally convinced that mine is hormonal. Does anyone else have this issue with IC?
I have an appointment with a uroligist who specializes in IC and I hope this time someone will believe me and not tell me it's in my head.
I feel trapped though like I will have to be on the pill the rest of my life and what happens when I go through menapause? I'm scared to find out.

***SharonA*** · 12-07-2009, 08:12 AM

to the IC Network...

I hope you are able to get some answers from the Urologist. It is so difficult to deal when you don't know just what you are dealing with. I know my brain ran away with all kinds of thoughts and "what ifs" before I knew just what was causing my symptoms.

Sending you supportive (((hugs)))...

**VickiB** · 12-07-2009, 08:46 AM

Boy, can I ever relate to your first paragraph! I, too, spent years getting pushed out the door with antibiotics despite no sign of infection and basically told to see a shrink. Why is it so hard to get some doctors to take you seriously? Finally I did start making headway, found a uro familiar with IC, began treatment, and now my IC rarely affects my life.

Hopefully your upcoming visit with the urologist will bring you a diagnosis and put you on the road to getting better. There are treatments and most of us do find one (or combination of) that brings us relief.

So I am totally convinced that mine is hormonal. Does anyone else have this issue with IC?

Yes. My IC used to flare like clockwork mid cycle. The only answer I have for that is hormones. The closer I get to menopause the less this seems to happen now. Who knows?

Let us know how your appointment turns out!
Vicki

**nottoc4** · 12-07-2009, 08:52 AM

Have you talked to your GYN? I go to a GYN and he specializes in Uro problems too. He is very compasssionent and has me feeling very good.

**Laura0911** · 12-07-2009, 03:10 PM

No I don't have a GYN and I was unaware that there were GYN's who specialized in Uro problems. I will for sure check into that. Thanks

**Laura0911** · 12-08-2009, 06:03 AM

I was feeling much better after starting back on my bc pills but today I feel like I'm at a 3 or 5 on a pain scale to 10. I'm really tired of this constant pain. I will be glad to see the uro doc on the 17th. I noticed some of you take ladacane topical cream (sp) for utethera pain. That sounds heavenly....

**KarenAnne** · 12-08-2009, 11:50 AM

And best of luck at your upcoming dr.'s appt. There is a great older post on here by "Briza" about questions to ask your urologist when you are a new pt. I am pretty sure it is by her. You can do a search on the older posts.

**Cassaundra** · 12-08-2009, 02:27 PM

Good luck with your doctor appointment. Let us know how it goes!

**Laura0911** · 12-21-2009, 07:38 AM

I went to the urologist doc on Thursday and she gave me a pill that turns my pee green and it really helps with the pain and she also gave me 4mg of Toviaz. Which doesn't seem to be doing much yet. I have a follow up in January for a pelvic sonogram and a cystoscopy. I'm not looking forward to the cystoscopy - I'm actually freaking out about it. I think it will be horriblly painful. How horrible is it? What does it look for?

She also said I had a slight UTI and ordered an antibiotic. This is the first time I have shown signs of a UTI when my urine is tested. I usually just hurt and they send me away with antibiotics that don't help. At least this doc was willing to listen to me, and she actully believed me when I told her I was in a lot of pain. She thinks from what I have told here that I have IC, but I will know more after the cystoscopy and the sonogram.

Is there a such thing as having reoccuring UTI's like 5-6 a year? That's how many times I feel like I am going to die from my lower parts being on fire. I wonder are those with IC more likely to get UTI's. I was thinking maybe this started out as a flare up and then turned into a UTI.

**Lizzy L** · 12-21-2009, 08:23 AM

Laura, the cysto should not be painful. They will numb the bladder -- you may feel some mild discomfort. You can ask your doc to prescribe low-dose Valium or Xanax, if you can tolerate them, for your anxiety.

Good luck; hope everything goes well.

Have you tried drinking a lot of water to diminish the acidity of urine? It helps some people.

**statesboro** · 12-21-2009, 11:20 AM

I just found your thread a few minutes ago. Ok. I have read every word of every posts; therefore, I should know you have gotten some good ones by now. I do think you have found a decent doctor, the urologist, that will get to the bottom of it. Of course, we don't enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! I would not say IC'ers are more likely to be getting a UTI, but many of us have.(none before IC)(some since) Oh! I would figure it is possible to have 5 in a year, but I don't know how likely it would be. (more than 1 in 2009 for me) Freaking out is not gonna help any. I don't think the procdure is worth freaking out over to begin with. That will be all now.

**nottoc4** · 12-22-2009, 01:45 AM

Laura,In 2007 I had 5 UTI's(all of them cultured).I was being treated by a Urologist and he diagnosed me with Over Active Bladder and assured me at my age this is not uncommon.(I'm 67 now and thought that was a bunch of BS)In 2008 I had 2 more UTI's. and quit seeing him and went to the UroGyn that is treating me now. After a few tests he diagnosed me with IC. My main symptoms were pressure in the pelvic area,a urethra that pinched and spasmed, frequent and sometimes urgent need to pee and many sleepless night from getting up to pee. I also felt sore inside like you might be sore after having intercourse all night long.(and I wasn't)I had an in office cysto and it wasnt too unpleasant. I've had one UTI since being treated for IC and it was a doozy. Since then I have been on 100mg Microbid and haven't had anymore.

**VickiB** · 12-22-2009, 08:56 AM

Originally Posted by Laura0911

Is there a such thing as having reoccuring UTI's like 5-6 a year? That's how many times I feel like I am going to die from my lower parts being on fire. I wonder are those with IC more likely to get UTI's. I was thinking maybe this started out as a flare up and then turned into a UTI.

I'm not a doctor but I think it is quite possible to have UTI's 5-6 times a year. Before my IC diagnosis that's what they kept treating me for so I asked them that very question. They told me some women just get UTIs that often. (Looking back, I don't believe I was having infections, rather it was IC flares, but that's another story) I've never read or heard a medical opinion as to whether having IC makes one more prone to infection or not.

I was really worried,..maybe closer to terrified

,.. about having a cystoscopy too! It turned out to be no where near as awful as I was imagining. The only uncomfortable part was during the insertion, and I wonder if that wasn't partly my own doing. I didn't know it helps to make a concentrated effort to relax. I fought that thing the whole way in! I'm not sure what all they're looking for in there. My doc said "other abnormalites that might explain having these symptoms." I think cancer was one of them. -A long shot, but something he needed to rule out.

It sounds like you have a good doctor who is covering the bases one by one. Hang in there and hopefully you'll know what's going on soon!

Vicki