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Interstitial Cystitis (IC) Message Board
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Old 12-07-2012, 10:47 AM   #1
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JSS2012 HB User
Please HELP, I am so desperate for relief...

Hello, I hope you can stand my long story, because I really need some advice here and I am getting very desperate.

Last November, I came down with an incredibly painful UTI. I am prone to them, but this one was the most agony I have ever felt in my life. I did not feel relief until I took a pyridium tablet my husband brought to me from the pharmacy. I was prescribed Cipro, but the symptoms came right back, although less severe. I went to planned parenthood and they said I did not show any infection, (they also tested me for possible STDS which I knew I didn't have, all negative) but they gave me bactrum just in case it was a UTI. I had a horrible reaction to the bactrum and was doubled over in horrible pain, so much so that my husband brought me to the emergency room. There, they did another urine test and said I did in fact have a UTI, that planned parenthood was wrong and they found it. They prescribed me Macrobid and within a few days, I felt completely better.

In January this year, only two months later, I got symptoms of a UTI again, this time, I went straight to the walk in clinic and requested Macrobid to avoid the nightmare month-long UTI I had last time. I got better almost immediately.

In June this year, again, symptoms of a UTI and it took a month to give me an antibiotic that worked to make the symptoms go away. They could not find an infection, even at the walk in this time, but I assumed it was a fluke like last time and believed it was a UTI. I have always been prone to UTIs, but if I got one once a year or so that was about it, this was my third time dealing with this in about 6 months!! About this time, I also started using Nuvaring as birth control. Planned Parenthood (who I now consider complete idiots!) told me I could keep the ring in 4 weeks instead of three to avoid my normally heavy and painful periods, so I did start doing this. I am now not sure if the nuvaring cause me an infection and this was what I was experiencing and not a UTI.

Now to November of this year, I took out my nuvaring and we decided to use condoms for a while, because nurvaing had killed my sex drive. I also noticed I had a kinda bad odor and wondered if it was from the ring being up there. The first week of the month, I had a cold, and the doctor prescribed me azythromacin. The 5th day in, my husband and I had sex, and immediately afterwards, I felt soreness inside. This has NEVER happened to me before, but I figured I could have just been dry or something. The next morning I woke up to what I thought were UTI symptoms, a tiny trickle of pee, I could tell this was clearly not normal and told my husband I was heading back to the walk in clinic yet again for a UTI. He felt so bad. The doctor there knows me at this point and just gave my macrobid. They did a urine test, but I had taken pyridium because it was a long wait on a Saturday in the walk in and I was barely able to stand the irritation without jumping out of my skin, so because of the orange pee from the pill, they couldn't analyze it. I was given macrobid for a week, I felt relief for only a few days and on the 5th day, the pain, frequency and pressure returned. I remembered once having a yeast infection (the only one I've ever had) which was brought on after many antibiotics and had similar symptoms to a UTI, so in the middle of the night, while I was in horrible burning pain, my husband went to walmart and got a screening kit for yeast infections and some monistat. The screening test came back in the yeast infection to normal color, so I treated with 3 day monistat, for an entire 24 hours I felt like my insides were on fire from the monistat, but my symptoms improved by the time it was finished. I waited a few more days and still felt ok, so my husband and I had sex again. No problems during or afterwards, so I thought we were fine. The next night, we had sex again and this time, immediately afterwards, sore again. Next morning, trickle of pee again, not normal. Soon enough, horrible burning pain, again. I called my doctor, thinking maybe the monistat just hadn't worked, and he gave me diflucan pill for yeast. Again, felt better for a day or two, then pain, frequency, burning and pressure, again. I then, stupidly, because I have no health insurance, made another appointment with planned parenthood. They did a urine test, no infection (but they've said that before and been wrong), they did a pelvic exam and once again tested me for STDs. They informed me I had Bacterial Vaginosis (BV), All STDs once again negative...The BV explained the odor and possibly my symptoms in my mind, but the NP at planned parenthood told me that BV could cause burning, but should not really cause frequency with little output and because I had no sign of infection, I should consider IC and see a urologist. I was put on Flagyl, an oral antibiotic for BV, but the symptoms only lessened and I was also sick as a dog from it, wanting to puke, dizzy, etc. It got to a point where I just would cry myself to sleep, I am completely fatigued all the time, I could sleep all day every day, I have no energy, it's lessened, but every few days, I have continued burning, pain and pressure, I can't have sex with my husband, I have frequency and let out little urine, sometimes it comes in stages where I will be going constantly with hardly anything coming out for two hours, but feel like if I don't go back, I'm going to explode down there, then it subsides. I called my doc and made an appointment and he seemed rather rude and as if I were wasting his time, he put me on metrogel and told me to see someone for a proper diagnosis, but I explained to him I was already referred to a urologist and they can't get me in yet, I am still waiting for an appointment!! The other places I have called have told me they have nothing open until March!!!! He only gave me the metrogel in case it is the BV and not IC causing my symptoms, I am still having frequency today with little output and the metrogel is burning my insides. I just feel like I can't take much more!! I want to know what is wrong with me, why nothing is working and nobody can give me an answer as to what to do to help this. I just want to live a normal life again. I am in graduate school and I have a final tomorrow, a presentation in front of the class and I can barely get out of bed to even work on it, I am becoming so depressed...

Does this sound like IC? What should I do to find out? When I do finally get into a urologists, what questions should I ask? Any treatments I should ask for that seem to work well? What tests should I ask for? What can I do to help with the symptoms if it is IC? Is IC constant or does it get to a point where you can live a normal life again?

Thank you if you got through all this!!!
J.S.

 
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Old 12-28-2012, 06:51 AM   #2
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Join Date: Jun 2012
Location: Europe
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Garda11 HB User
Re: Please HELP, I am so desperate for relief...

JS2012, Thanks for writing my story!!!! Its the exact same for me.... Only Mine started in February and I was fine till July, ans then September, and now I am getting it every few days. 22nd 23rd of December, then again 27th, 28th, which is like my 5th bout of it this December. My appointment to see a urologist is early Jan, but I know what he is going to say, and his first appt is 200euro.
But I suppose I have to go and rule out anything else, but I hope there is something else causing it because As far as I can see there is no relief for I.C.

I am delighted that there is a group set up for IC because I made about 3posts on the urology board not seeing this board till now, so hopefully sometime, someone might find something that works for them,,,, or some mircale might happen.

I am just so fed up and down about this. I have suffered with chronic back pain and had discs fused, 6 screws and 3 rods and a cage inserted into my spine, so I sure know pain. Just as I was starting to get my life back and control the pain this starts. I just dont want anymore pain ....

garda11

 
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Old 01-27-2013, 05:22 PM   #3
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Join Date: Jan 2013
Location: SC
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New Creature HB User
Re: Please HELP, I am so desperate for relief...

This definitely sounds like what I went through before my diagnosis. Don't let any physician tell you that the symptoms are in your head. You know your body better than anyone. I went to many doctors before finding some relief. My doctor, Dr. Evans in NC, put me on Elmiron, Gabapentin and Hydroxyzine. He said it is imperative to take all three meds together to get relief. He also gave me a list for the "IC diet". Haven't mastered that yet. The things on his list are very different from what you find on the ICN Diet list. :/ Just know that there is HOPE! Praying for you!

 
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Old 04-09-2013, 10:57 AM   #4
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Join Date: Apr 2013
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Phogan26 HB User
Re: Please HELP, I am so desperate for relief...

I came across your post and wanted to help you a little as I have had IC for 3 years now. It is not in your head I will tell you that and also UTI's is not the cause nor a symptom of IC. IC can only be diagnosed by undergoing a surgery in which the urologist must scope and look at your bladder wall and see how much bleeding your bladder is doing and to also see if there is inflammation. Many people jump right to UTI's as a cause or OMG I have IC because I get a lot of UTI's. This is not true, you also have to have pain/pressure/peeing anywhere from 30-over 100 times a day/ getting up all night to use the bathroom/ Lower abdominal pain and there is many more but UTI's if that is your biggest prob that is not IC. I am not trying to down size what you are telling everyone I am just trying to help you understand what IC is and if you have it what to do. There will be hope for you if you go to a urologist and have them check you and let you know and don't let them tell you that it is IC without doing the test and don't let them say it is in your head. I know a lot about IC because of being a RN and my medical background and understanding this complex diseases that I have struggled with and has made my life hell.

 
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