Nightmare few years

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After suffering since I was about 16 years old with what we thought were UTI's (only one-two showed growth at the lab) I am finally being treated with weekly bladder instillations, having the diagnosis on my hospital file changed from recurring UTI's to IC. Its been very hard over the last 3 years with constant bladder pain/ pelvic pain and a lot of doctors visits and hospital referrals only to be told they have found no answers to my problem. I have had the flexible camera, ultra sound scans and CT scans theyve showed nothing.

My problem is that I feel like after coming back with no answers the specialist has written to my doctor saying that theres nothing more he can advise or do other than give me the instillations which I feel is not good enough. At my last consultation with him he discussed that he would like me to be seen by the renal department and also wondered if there was more to the reason I was experiencing IC. I have had a lot of infections in my toes and its taken 6 rounds of tablets to get rid of one infection.

Long story short I was passed onto renal by the urologist and they cancelled the appointment as they feel they dont need to see me. Im worried about autoimmune diseases as I just dont feel right and all my problems feel like theyre rolling  into one and they are not getting better. I have good days and bad days and struggle to keep it together most days. Last year I suffered bad with red rashes sometimes looking like hives and sometimes changing to long scratches or lots of red and white itchy spots. I was treated with antihistamines and they blamed stress. It disappeared after while but hasnt come back with me being massively stressed right now which I find very strange. I also struggle with IBS like symptoms, tirdness, headaches and all the IC symptoms. I occasionally dip test my urine at home and have the doctor do it and this almost always shows white blood cells, sometimes protein and occasional micro blood.

I am looking for some advice on maybe getting help from the right specialists or anyone that has similar symptoms or story. Any help would be great as its hard to get people to understand how it is having this invisible illness. Sometimes I feel like people think I just make up how hard it is.

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5 Replies

  • Posted

    I hear ya! But have no help.  It always amazes me at how uninterested our urologists seem! Prayers your way!

     

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  • Posted

    I have Cystistat instillations every 4-6 weeks for IC.  I also take Prelief tablets with every meal and AZO when I get a flare.  That keeps the pain reasonably at bay but doesn’t remove it completely.  Have shared the use of Prelief & AZO with GP and urology nurse and didn’t get told not to use them.

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  • Posted

    I was just diagnosed a few weeks ago, I hate my dr now for making me suffer five months would not let me even make an appointment.   The receptionist with attitude says just do you intalations dmso or what ever.  Even pain management hard to come   by
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    • Posted

      That sounds awful!! Surely they can’t do that and receptionist are not allowed to advise on medical issues! I’d be placing a complaint Pam... :o
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    • Posted

      Hello LDCR,

      I'm new to this discussion but I am on another one dealing with anxiety. But I also have IC. I was diagnosed 1-17. I too was in tremendous pain. My urologist suggested Elmiron, But my health insurance only pays so much of it, I would end up paying $320. a month, can't afford that. But I did some research and found out that some people out ice on pelvis area where the bladder is. I tried it and it does relieve some of the pain. Don't overdo it , maybe 10-15 minutes. But you should always ask your doctor first. Also follow the IC diet, Never wear tight clothes, and don't lift heavy objects. Another article mentioned the tens machine, But this should only be done after talking to your doctor. Some physical therapist can also help you. I hope this helped alittle. Stay strong.

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