Interstitial Cystitis

Hi. I have been suffering from intense pelvis pain and have an urgency to pee which when the bladder is full it can be painful to pass the urine and after having passed urine the painful pressure is slightly relived. I also needed to get up 2/3 times a night. I have gone under many test with my GP as I also have a metal plate at L5/S1 and a implanted neuro stimulator. My urine has been tested many times and shows I have no infection, no stinging. Or blood in my urine. At last the gave found that I have Inerstital Cystitis which cause damage to the bladder wall. I am now under going treatment to help clear up my bladder inflammation which can't be treated with antibiotics. My treatment is a 8 week course. Have any of you other have the same problem as me as I would like to hear from you. Cheers Pauline

5 Replies

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  • Desert harvest aloe helps the bladder. Look up pudendal hope.org

  • I was diagnosed with interstitial cystitis. I did not believe it wasn't an infection so I researched and researched. I found info on biofilm infections and an NHS specialist in London who treats it. Unfortunately at the moment he's not allowed to take on NHS patients, but he can see patients privately.

    PM me if you want details.

    You just reminded me of that awful pain I used to have when my bladder was full. I forgot as I haven't had it for ages since treatment!

    Standard NHS urine tests can't pick up biofilm or embedded infections. My treatment was antibiotics.

  • Hi. I have a private consultant who 2 weeks ago stretched my bladder which has given me some relief. I see him next Friday and will probably have to go onto the next part of the treatment as I still have problems in siting and driving with the lower belt across my pelvic region. I my urine seems to be green. As I have been on my medication for 16 years so it can't be then and my diet has not changed. So I will be looking for more answers from my consultant.

  • Hi. I have judged under gone treatment in hospital where the private consultant has stretched my bladder I am due to see him next week and I have to tell him that I have had some relief as I do not need to go to the toilet quite so often, but I am still having pain in my pelvic region so I guess I will have to go on the 8 week treatment. I also gave green coloured urine which I forgot to tell him about. I don't think he will be too pleased with me for not telling him.

    Like you a have plates in my lower back and I neuro stimulator in my back but it does not help with pelvic pain.

    Will update you after I have seen my consultant

    Cheers Pauline

  • This might be muscle related! I know many with IC-diagnosis actually "only" have hypertonicity in the pelvic floor. Please check out: 

    pelvicpainhelp.com/

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