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  • #1

    Oh my god, it's happening again...

    I'm absolutely terrified. Last fall and spring I went through a series of what I thought were UTIs. After the third one, the symptoms just didn't go away. Granted, at the time I was bombing my bladder with cranberry juice and taking a perscription from the doctor that acidifies urine. No wonder I was in such pain.

    My GP mentined IC and sent me to a urologist. After a perscription for detrol, etc....the uro blew me off and said, come back in three months. As did the second and third urologist. (all male) They all looked in my bladder with the scope but everything looked normal and my bladder size was huge. Basically, the last urologist said there was nothing he could do for me. I had read a lot about IC and they all said, its NOT IC. In fact, the third one yelled at me for being obsessed with IC. Of course, I was still feeling miserable and horrible at the time.

    Fast forward...after about five months of following the IC diet, the symptoms went away and I was feeling great. I could eat anything I wanted, drink some coffee, etc. Since they had been so adamant about it not being IC, I figured that it must have just been irritation fromt a chronic low-count infection. I had to find some rationalization. This "remission" per say lasted about six months. I even got my sex life back! It was heaven.

    Well, last week, I forgot to take my antibiotic after sex. STUPID! A day later I was feeling the UTI symptoms. The other stupid thing I did was assume it was a UTI and didn't get a culture. After a day of antibiotics, I was feeling much better and taking care of my bladder by resting, drinking almond milk, eating tums, etc. After a few days on them, I was back to feeling the awful burning sensation. Felt like a yeast infection, so off to the drug store.

    Now, all of the old symptoms (pressure, frequency, burning) have returned and I'm absolutely terrified that they are going to stay! I've been taking pyridium, ibuprophen, and xanax (because the stress is almost worse than the symptoms!) to get me through the day. And to be quite honest, they're helping quite a bit. Resting when I can, and taking care of my bladder. Following the old IC diet.

    I'm just hoping and praying that since I caught this flare early I can get myself back out of it.

    Thanks for letting me vent.
    Tags: None
  • #2
    I hope you feel better very soon. If you don't, it does sound like you need to see yet another urologist.

    Sending warm healing thoughts,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    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.

    Patient Help: http://www.ic-network.com/patientlinks.html

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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.     [3MG]

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

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    • #3
      I hope you get over this feeling soon.
      One thing, if a uro yells at you for standing up for your own medical welfare, you need to get up and leave. He definately isn't a good one for the long haul.
      I hope you have a better week with less stress too! (Easier said than done, huh?)
      Hugs! grouphug
      Tons of support,
      Jaime

      IC angel helping families in need for the holidays. [email protected]

      Comment

      • #4
        Hi... I hope you are feeling better!! grouphug

        I definitely agree with the previous post by jaime15... if a uro yells at you and/or tells you you are obsessed with your (potential) condition, it is a sign that it is time to look elsewhere for medical help.

        I just switched urologists because my previous one, while usually pleasant, cancelled way too many appointments with me and also requested tests that I suspected weren't really necessary. My new uro (who my hero husband found for me) confirmed this suspicion, and indicated that he had heard similar stories from other patients about this particular doctor. In today's appointment with the new guy, I feel we got more accomplished than the last 5 with the old doc, and I am very glad I made the switch.



        Good luck in your search... remember it is not all in your head, and you have a right to quality medical care (including pain relief).

        grouphug grouphug

        Jen
        ****
        Jen

        *Diagnosed with severe IC in 2004
        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

        **I am not a medical authority nor do I offer definitive medical advice. 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.

        Comment

        • #5
          Hi frustrated,
          It sounds like another uro might be a good plan. I thought that IC didn't always show up on hydro/cysto, and that if you are responding so well to the diet, well thats kinda telling.
          Hope your flare settles down quickly, I use heat and it helps alot.
          Cath
          One day at a time

          Comment

          • #6
            I hope you feel better soon and i agree with donna find another uro. hugs prayers sent to you. grouphug
            Medicine taken daily or as needed:
            1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
            2. MS.Cotin 100mg 3x daily
            3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
            4. Fentanyl 100 mg Change every 48hrs.
            5. Gentamicin 80mg install after each rescue treatment
            5 Leviquin 500mg self start as needed.
            6. Klonopin 1 or 2 daily as needed.
            7. Prosed/DS as 1 every 6hrs as needed.





            I have IC, but IC doesn't have me anymore!

            Comment

            • #7
              Dear Frustrated:

              Stress is the number 1 cause of IC Flare-ups; so try to relax both physically and mentally. Follow the IC diet, which has worked for you before.

              If you indeed have IC, you may want to try CystoProtek (www.algonot.com or call: 1-800-254-6668 and ask for an informational packag). CystoProtek is a dietary supplement that may help to rebuild the lining of your bladder, it also contains Quercetin which inhibits mast cells and other inflammatory cells. By rebuilding the bladder lining and reducing/stopping inflammation, it helps many patients with frequency, urgency, and pain.

              Please don't give up on the medical community, there are some very good urologists out there. If not, your primary care physician may be able to help you. Make sure that your doctor(s) rule out other possible conditions that may mimic IC.

              Moreover, 70% of IC patients develop Pelvic Floor Dysfunction - which can cause many of the same symptoms as IC and can increase the degree of symptoms that the IC sufferer may already have. Pelvic Floor Dysfunction (PFD) occurs when the muscles of your pelvic floor (the area surrounding your rectum, vagina/scrota, and urethra) do not contract and relax properly. To prevent it or stop it from advancing further, DO NOT STRAIN OR PUSH TO VOID OR TO HAVE A BOWEL MOVEMENT.

              For a PFD Fact Sheet, please send your request to [email protected].

              I suggest that you consult with your healthcare provider if you believe that the information above may be helpful; your healthcare provider will determine the appropriate treatment regimen for you.

              The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

              Best wishes,

              ICB
              Last edited by ICB; 07-06-2006, 05:55 PM.

              Comment

              • #8
                Thanks everyone. I've called my GP and scheduled an appointment for this afternoon. I will ask for yet another referral to a urologist. The good thing is that we live in a new state now and will hopefully have access to better doctors. Anyone know a good urologist in Massachussets?

                I couldn't believe the treatment I received from the last uros. It was amazing. The first two in Seattle said irritated trigone area. Take pyridium, detrol for three months and come see me. Ok... though all would be fine. A month later i was still in agony and went to see a urologist closer to home. He took me off detrol because of the retention and yelled at me for reading about IC on the internet! I couldn't believe it. I started to think I was going mad. Then I thought, well maybe he's right. Maybe I don't have it. But, then what do I have??? All the symptoms are the same? I'm miserable, I'm depressed, etc.

                Thankfully, I did start to get better bit by bit. Now I'm feeling horrible that I did something to trigger this latest episode. Like most of us, I'm a wife and a mom and I want to be healthy.

                Comment

                • #9
                  Hi,
                  Glad to see you are going to the Dr. and I would insist on a uro consult. I do believe there are some gals on here who are in the MA area. If you don't get any responses go to this link and see what you can find. Good Luck.

                  http://www.ic-network.com/md/doctorlistings.html
                  Jolene

                  "Life is what happens when you are making other plans" John Lennon

                  IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

                  Information for Patients can be found here.
                  http://www.ic-network.com/patientlinks.html


                  Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




                  Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

                  "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

                  Comment

                  • #10
                    My I.C. cycles just as you have described yours. I get worse now usually late winter early spring and then I go into "remission" where I can eat most things in moderation. I continue taking my meds during this time but I start to feel as though I don't have I.C. until late winter a huge flare hits that sends me spiraling down and prevents me from doing any of my normal activities.

                    I agree with the others I think it sounds like you need to search for a more compasionate Uro. I have been extremely fortunate to find a wonderful urogynocologist that really understands women's urology and is trained in gyno first to listen to a patients symptoms and history and then to start testing before any diagnosis is officially made. He told me in my first office visit that he suspected I.C. but he wanted to do further testing. He rulled out several things and then diagnosed me with the potassium test. He immiediately had his nurse go over diet, and meds with me extensively. In those early days and even now when I'm bad its not uncommon to get a call from his nurse and spend a half hour discussing my I.C. treatment, symptoms, and the pyschological toll that its taking. They are wonderful. While I know that there are many incompetent uros. I believe there are also some very good ones. You might try looking for a urogynocologist. I found out about mine from the office manager at my Primary care dr. who we are friends with. I had a suspician that it was I.C. but I also had pain that could be gyno in nature so I was glad to find one that would assess and treat the whole woman. I didn't tell him anything about my research and possible diagnosis of I.C. I wanted to see what he was going to say first. His first question for me was what do you think you have. He said he's frequently the last dr. in a long chain of other uros seen first so he's used to patients coming in with their own suspected diagnosis based on their research. He and his staff admire me for researching options and bringing new treatments to the table. They are not intimidated by patients like my previous uro.

                    I had to tell my first uro that I seemed to have all of the I.C. symptoms. He was a jerk and told me it was probably just clamydia or it might be Multiple sclerosis but he couldn't test me for either. He was intimidated by my knowledge, questions, and the fact that I brought a family member with me to some appt. to get another oppinion. Everyone agreed that he had to go!

                    I wish you luck in finding a new dr. that will help you. Don't stop until you really feel comfortable with one because you will be working together a lot. In the meantime it sounds like your doing the I.C. diet and taking it easy. Keep us posted!

                    Rachel

                    Comment

                    • #11
                      Oh dear!! I am SO sorry a uro yelled at you for researching IC on the Internet. That is unacceptable. I am glad you are not seeing that person anymore.

                      I think dr's get mad sometimes when they are really intimidated... many uros don't know that much about IC and would prefer to think it doesn't exist. So, rather than admit to a deficiency in their knowledge base, they get mad and yell at you.

                      I've had docs behave that way with me for various things... those kinds of docs HATE me, because I have a Ph.D. in molecular biology, and have a lot of the same (or in some cases, more!) scientific knowledge than they do. I ALWAYS do my own research if I don't feel good and I comment on what docs are doing and ask a lot of "why?" type questions.

                      For example, for this IC thing, I went on the Internet, but I work in a hospital--so I went to our library and also read the chapter on IC in Campbell's Urology (a urology textbook for doctors, the chapter is written by Phillip Hanno, who's quoted on the ICN) and also read the little blurb about it in Harrison's Principles of Internal Medicine (another text... and girls, in that book it still lists "psychosomatic" as a cause for IC )

                      Luckily, my new uro thought it was GREAT that I'd read the texts on IC and we actually had a scientific discussion about it. It was fun. I hate docs who treat patients like they are stupid... nobody deserves that!!

                      I think you should ALWAYS do your own research. And if you don't like what a doc is doing, you have every right to switch health care providers.

                      Good luck with this. Keep in touch!!

                      Jen
                      ****
                      Jen

                      *Diagnosed with severe IC in 2004
                      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                      **I am not a medical authority nor do I offer definitive medical advice. 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.

                      Comment

                      • #12
                        Thanks everyone. Because we moved, I now have an AMAZING GP. I went to him this afternoon and spilled my guts to him about everything. I'm so not used to being able to do that. In Washington we had five minutes tops with the doctor and they kept changing every other time you went to them.

                        We have two options...

                        One, there is a chance that this is really still an infection because I was on a preventative course of antibiotics (after sex) and that was what I was using to treat what I thought was an infection. Apparently, you are never supposed to use a "preventative" antibiotic to treat an infection because you've developed some level of resistance. So, he's given me a 10 day course of levaquin. I'm praying big time that the antibiotics work their magic.

                        Two...
                        If I don't feel better in a few days, he's sending me to a urologist here in my hometown who is very familiar with IC. In fact, when I asked my GP if he was familiar with it, he said he has at least a 1/2 dozen patients who have IC(amazing considering that we are in a very small town). He was amazed at my level of knowledge and commented about it. He also was quite upset about the fact that I was yelled at for doing my research. This is the same doctor who was mad at my GP for even mentioning IC and in his words, getting me "obsessed" with it.

                        You are all wonderful!

                        -Robin

                        Comment

                        • #13
                          Opps...that wasn't very clear. It was the mean old urologist who was mad at my GP for mentioning IC! Shame on him. Whatever the cause, my bladder was irritated and grumpy and I needed to hear the suggestions from the wonderful people on this board. If she hadn't mentioned IC, so that I could research it, I'm sure I'd have been committed by now.

                          Comment

                          • #14
                            My first Uro was a nice ol guy, a former marine not used to female plumbing..I believe. I got a hold of his notes....It said, "may have I/C...Ihope not."..Kept giving me pyridium and I think a weeks worth of vicodin. (I'm currently on Morphine 3 times a day, valium...andotherpain stuff) He had a tough time with prescribing pain meds. Finally he did a hydro w biopsy, found the numerous mast cells and the rest is history. He kindly referred me to his partner who is female and young, (mid 30's...so my age) and she has saved mylife! My own GP has also saved my life by keeping my pain meds undercontrol. I'm also seeing a pain doctor....Then I have a nerve block I need to do. Monday.

                            I sure hope you get an answer soon...Find a nice Uro

                            Tracey
                            I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                            Medications I CURRENTLY take:
                            90 mgs Ms contin (45 mgs Am/PM)
                            Percocet as needed
                            Topomax 100mg day
                            Ambien 10 mg bed
                            desipramine 25 mgs




                            If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                            Albert Einstein

                            Comment

                            • #15
                              Most uros will shrug their shoulders when you ask what causes IC, but be sure to find one who will work with you. The one I have now is glad that I get info over the internet. Having them believe you and working with you is a good start.

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