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  • needing advice

    Hi my name is Bre I'm 32 and and have one little boy. My story began last year when I started having severe UTI's. Very painful ones and ones that wouldn't go away. Or if they did go away they went away it was for a week or 2. Around June of last year I got one so severe that I my doctors tried 4 different antibiotics and it stayed, so after a month and half my gyno sent me to a urologist. By then I was in such severe pain that I compared it too giving birth except at least with birth doctors are nice enough to give you medication. I was told to take Motrin (although I was already taking way over the maxium amt. of Ibuprofen) and to come back in 3 days for a cystoscopy b/c they expected IC. The next I called the office crying and screaming in pain and was brought in 2 days earlier. I was given a CT without contrast which showed nothing, then my cysto was done. Lining of my bladder was perfect, no polyps or tumors were seen. The urologist decided at the time though to put me on Emilron even though there was no diagnosis. He said to stay out for 4 mths and let my bladder re-set itself. The medication got to be too expensive and wasn't helping b/c I continued to have UTI's so I quit using it after about 2 months. Fast forward to this year I've done pretty well I've only had about 3 UTI's. Last Monday I woke up b/c I urinated all in my bed (so embarrassing) and after going to the bathroom and peeing more and cleaning myself up and changing sheets I was in extreme pain. This time it started in my left kidney. My husband begged for me to let him take him to the er but I wouldn't. I ended up going to work for only 3 hrs. b/c I was in such severe pain that I ended up going to the er....I was diagnosed with a uti and sent home with Cipro. Continued with extreme pain and went to see my gyno on Wednesday who said I had a full blown kidney infection and thought I had a stone. Was sent for CT but again was done without contrast so of course nothing was seen (the radiologist then fussed at the dr for not doing it with contrast). Called my gyno Thursday am to explain I was in extreme pain and vomiting. She then said to control my pain and vomiting she wanted to put me in the hospital. But wanted me to see my PCP first. So off I go too him. He then states she had spoke to my urologist (who by the way after the way he treated me especially brushing off my pain I hate and will never go back) says that my symptoms aren't urology related. My PCP does a urinalysis tons of blood in my urine and nitrates off the chart. Sign of full blown kidney infection he also suspects stone. So he sends me for ultrasound. I haven't heard back from it yet though. My gyno calls me back Friday and says my urine culture was negative and it's a flare up of my IC (this is where I get confused) and called in a refill for my Emilron b/c he wants me to start taking it again. I don't understand if I don't have IC according to the urologist why am I being told I do? Why am I being told to take that medication? Wouldn't I have constant flare-ups without being on the medicine or diet restriction? I need help. I am considering a 2nd opinion. I'm so depressed and frustrated. I am tired of getting UTI's and being in so much pain that I can't work. I do have constant lower back pain which I've read that can be a symptom of IC. Does anyone have some advice for someone that is beyond ready to give up?

  • #2
    I have to agree that a second opinion is a good idea. And just so you know, Elmiron can take up to six months or longer to become effective so it's not surprising it didn't help you. I hope you get some answers soon. I know that not knowing is horrible. While you're waiting for appointments and testing, I suggest you give the IC diet a try. You'll find a link to the latest food list in my signature below.

    Sending gentle hugs,
    Stay safe

    Elmiron Eye Disease Information Center -
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    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool


    • #3
      I agree with Donna, get a second or third opinion ... until you get the answers you need! My mom had kidney problems and the kept telling her it was stones, or the runaround. It took a few years for her to be diagnosed with a type of kidney disease. After being treated sucessfully my mom is feeling normal again. i don't know how many doctors she saw until they diagnosed it!
      -Pammylynn Rose
      Wishing everyone a pain free bladder day!

      Painful symptoms start in May 2011
      Diagnosed with IC in Aug 2011

      Axert (only for rare migraines)
      Strict IC diet
      Gluten/dairy/egg free diet


      • #4
        hi thanks for the responses. I did try the diet for months. Wow what a hard diet to follow but I did well and saw no relief really as well. Was back and forth with pain and infections yet again. I still limit myself to what I eat still just in case. I don't full fledge do the diet now but I've eliminated a lot of things. Thanks again you guys.


        • #5
          I have had a uti almost every month for a year and no antibiotic takes it away. I finally tried D Mannose powder and it seems to be working. I would get a uti everytime i had intercourse and it has been about a month and a half and no uti. I took it every three hours 1 tsp. until my symptoms subsided. Now i just take it once in the am and once at night. I also recently added Marshmallow root pills, and Slippery elm pills. I am feeling better than i can remember. Wishing you all the best.


          • #6
            hi mommyof5....yes they always send them for culture. These last ones have been negative (surprisingly) usually they do grow bacteria. I am pretty sure they send them out everytime. Usually they come back negative at the dr. so they send them out where they come back positive.


            • #7
              so I called and made a 2nd opinion appt. to another urologist. I go Sept. 8th. Even though I'm not diagnosed with IC he specializes in it so hopefully I'll get some answers. I still have yet to hear from my dr. about my ultrasound even though I did have to call them today to tell them I will need my records.


              • #8
                I have also had times where when they do the test in the dr's office it is negative then send a culture out and it turns out positive. I think our bladders are more sensitive because of ic or other issues so even a little bit of bacteria in our urine bothers us. Hope your new doctor can help.


                • #9


                  • #10
                    I really do hope you feel better. What a horrible ordeal! Did the doctors actually treat you for a kidney infection? Blood in the urine as you described sounds serious. What did they say about that?

                    I'd definitely get a second opinion (or more if you have to)!

                    Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

                    Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

                    Other conditions: Migraines, allergies, mild IBS.

                    "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)


                    • #11
                      I go for a 2nd opinion on the 8th. As much pain as I'm in it feels like months away.


                      • #12
                        Finding doctors is frustrating

                        I went to a research hospital and I was told that most urologists don't like to treat IC. (can you believe that)!! I can certainly understand why, but I think that if more IC sufferers were women, there would be treatments, pain meds, everything under the sun available for help. Men wouldn't stand the pain. I think they would literally tear up the hospitals and hold hostages if they received the poor quality of treatment that I received. Try to give referrals from IC patients in your area. Do, above all, seek as much professional advice as you can. It does take time for virtually all treatments. If you can find a doctor that will give you short term pain meds and sedatives, use them. I am terrified of narcotics. There are so many accidental overdoses, especially when mixed with other drugs. I am in remission, and haven't taken more than a couple of weeks worth of pain meds since I was diagnosed over about 6 years ago. I couldn't take Elmiron, orally. That was the beginning of instills. I finally found the root cause. I think. If you read all the treatments that are available, and discuss them with a good urologist, it will give you hope. That is what you need now. And the support of family and friends....


                        • #13
                          severtt, why could you not take Emilron? And yeah I think having little to no support is depressing me at this point. My husband is being very supportive and I have one dear friend who is and who checks on me everyday and if I'm not working wants to take me out or come over but other than it's lacking. Yesterday my dad even said "oh just don't worry about it and it will go away" I wish people would read about the disease before they judge so harshly.


                          • #14
                            I had a massive flare-up starting with chronic UTIs in November through now. I'm on constant low-dose anti-biotics everyday. If you're next urologist doesn't work out then try looking at the doctors we have up on this site. That's how I found mine, but since you said yours specializes in IC then it should go well. General urologists just aren't that great for IC from my experience.

                            There's also no solid diagnoses method for IC. It won't always show up on the scopes or any of the other tests. These days they're supposed to base it off of ruling everything else out and on symptoms while only using scopes for complicated cases.

                            Hope you feel better soon.
                            • 27 year old student
                            • Had symptoms since I was 5
                            • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
                            • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
                            • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
                            • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..

                            Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

                            What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

                            What didn't work: Elavil, vistaril (12/22)


                            • #15
                              ((((hugs)))) thank you!