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  • mild or moderate?

    hello from the uk!

    i am 20 and was diagnosed in jan and am still getting used to everything really, though i am very pleased to put a name to it. however my consultant, after identifying 3 areas of damage in my bladder, is rubbish said he would see me agian in three months....!! didnt offer any treatment or ways to cope with the pain of changing my diet...i have had to find all this out myself. do i need to talk to my local GP about this? and what treatment do you think i should look in to? because i feel as though ive been left in the dark.

    My symptoms are a mixture of what have been catagorised as 'mild' and 'moderate'.I get alot of pain in my urethra after ive urinated which can last hours. Also there have been many times when i have bled,sometimes not liquid blood either, actual tissue.Not as often do i have the urgency to urinate,but when i need to go i need to go! typically though i feel asthough i need to go again even though my bladder is empty..

    any advice would be most welcomed!
    tigerlily xxx

  • #2
    Hello there -

    What part of the UK are you from? I am originally from England. Born and raised in North London. My whole family live in Luton. I got married and came to the US, I have been here for 15 years.
    I am sorry to hear about your problems. You should look in to getting into a pain managment that can help with the pain. Soaking in the bath with epsom salts can help with the pain on the uretha and the heating pads are a godsend! Really try to do the IC diet that really makes a difference.

    I am not sure what medications you get in the UK. I was diagnosed last year August. I am taking Elmiron 3 x a day, Elavil, 5mg Elavil, neurontin and vicodin. I feel much better with my combo of meds. Its so different with the doctors in the UK. Your GP has to refer you to a consultant and I know it can take a while.

    Take care



    • #3
      You've found a good place for info, but I wish you didn't need it!
      At anyrate, it's mind blowing you're having symptoms like that and didn't get anything from your consultant. You may have some luck with your GP, I was pleased to find out the other day that my regular doctor actually has experience treating this and knew what all I was talking about when I relayed my info from the urologist to him.
      Do you have Prelief and/or Tums (or something similar) in the UK? Those might be able to help with your symptoms to a degree. You can also, if you can stand the taste, add a quarter of a teaspoon of baking soda to a glass of water and chug it. That helps me out a lot.
      My case seems much milder than what you described, but I'm prescribed to Elmiron twice a day. I also take the supplement glucosamine with msm and a blend of herbs for kidneys that includes cornsilk and urva ursi. That stuff is touchy, though, because some people cannot tolerate those. Also, be wary of your vitamins. Many people with IC have problems taking them.
      Check out the diet. It's not a pretty one, but after you're on it for a bit you can find out what you can have and what you can't. There's supposed to be no cheating on it...but I suck at that.
      Scour this site and you will learn a lot to help yourself.


      • #4
        Hi Tigerlilly 77. I am in the Uk too and I think these boards are great. I have just been diagnosed with ic and I am lucky as I have just started Elmiron. Have you got IC? How are you treating yourself if you haven't been pescribed meds? I am also doing the ic diet approximately as I was on the candida diet anyway. How did your consultant decide not to give you meds - what was his rationale? Is he hoping you will improve with time?


        • #5
          thanks guys,
          i have no idea what to think really... i too am suprised that i have just been left to get on with it, also a little upset. I have got ic as he told me i had yet that is all he told me and just said he'd see me in 3 months.the nhs system in britain is shocking. do you think i should go to my gp for medication ponytail???

          everybody seems to e taking elmiron? what exactly does it do?

          im not really treating myself apart from have started a diet and avoiding alot of foods that could be problematic.slightly worried how i am going to get vitimins though?

          i just deal with the pain whan it comes and take both paracetamol and ibprofen when it gets really bad. Unfortunately i am a student at the moment and being ill away form home and in crappy halls is not helping....!!


          • #6
            You have found a good site here as these guys really seem to know a lot about the illness. Elmiron is not licenced in the uk, but the consultant can sign to agree his responsibility for prescribing it to you. Your GP may not have heard about it. It may be up to your consultant. You could go to your gp though for amytriptiline, an antidepressant that in small doses seems to suppress pain signals I think. It is prescibed a lot in 10mg to 20 mg for this purpose. The diet is very, very important. Vegetable stir frys are cheap and try tums or other similar things to before a meal to help alkalinise before food. However, your consultantshould be helping you and I don't understand why he isn't. You should talk to your GP to maybe contat him to get another appointmen for medication or to send you to a pain clinic.


            • #7
              I understand your frustration. When I had the Cysto & Hydro done, the doc gave my husband the name & author of a book for me to read & that was IT! Needless to say I got online & researched my eyes out!!! I also joined Yahoo support groups & started talking to others, that is how I got to where I'm @ today

              I was diagnosed with mild IC, no pain thank god but just the constant urge to pee.
              [FONT="Comic Sans MS"]
              Medically diagnosed Post Menopause 9-13, unsure for how long! Have: IC, IBS-C, arthritis, carpal tunnel, hypoglycemia, RLS, seasonal sinusitis, depression, anxiety, infertility, hormone imbalance.

              Please read Screaming to be heard by Dr. Elizabeth Vliet. I do deep cleansing breathing & relaxation morning & night along with doing Yoga everynight now, it's been a huge blessing for my body! Born & raised in Michigan, relocated to Oklahoma in 9/09. Please Don't stop anti depressants or mood stabilizers "cold turkey"!


              Jen Meier Cascaddan on Facebook

              Married for 21 years, have 2 cats that are my "boys"


              • #8
                mild to moderate?

                I'm not sure about what is considered what, but I was diagnosed in Nov. 06 and that was only after I switched drs for another's POV. My 1st dr just didn't act like the pain I was having was serious or he just didn't care, anyway they started doing the treatments on me where they put that med in you. It worked for awhile and then it seemed like I was in more pain the following days (which come to find out now was because I am allergic to latex). I was referred to a urologist who then did a biopsy and now they rxed Elmiron. I haven't started it yet but I'm hopeful. I saw my pics of my bladder and it is completely red w/ thousands of spots, he said it was one of the worst cases he had seen and I'm only 24, it is upsetting but I have found this site to be very informative and helpful of my questions.
                Mrs. Ridings

                I was on...
                Loestrin 24(to prevent period induced flares)
                Elmiron since Feb.'07 for a year and half
                Atenolol for Migraines(caused by elmiron) since June '07(Had to have the amount doubled)
                Tried Prevacid didn't work.
                Tried Axert for migraines didn't work.
                Tried Frova for migraines made worse.
                Atarax Feb.'07-Feb'08
                Used to take IBS meds of all kinds, now I use Yerba Mate guayaki drinks, eating lots of fiber and flax seed, and taking probiotics and added magnesium. My probiotics help w/ flares too.

                Now for the occasional flare related to stress, I take probiotic eleven and marshmallow root and it will make it stop and Im fine again. Otherwise I dont have many problems w/ my severe IC like I used to.Thank God!

                Find the good in all things and then
                anticipate the good so that you may enjoy it.

                (KJV)Psalms 37:
                3 Trust in the LORD, and do good; so shalt thou dwell in the land, and verily thou shalt be fed.
                4 Delight thyself also in the LORD: and he shall give thee the desires of thine heart.
                5 Commit thy way unto the LORD; trust also in him; and he shall bring it to pass.