Interstitial Cystitis / Painful Bladder Syndrome - Possible Solution - please read!

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Hello Everyone who is suffering from IC/Painful Bladder Syndrome. I wanted to write to you all urgently as I have just found a solution that works for me so I'm guessing it may work for many others.  I have had 3 years of suffering IC and have had my bladder stretched and instilations. I tried every diet with no success.  I bought Desert Harvest tablets which had no effect.  My symptoms were a cycle of either wanting constantly to pee or else suffering chronic, severe pain in my bladder and pelvic area. After trying amitriptyline and every antibiotic going I was still getting no relief.  Anyway to cut a long story short as a last resort a doctor prescribed me Gabapentin 300mg which I took 1 per day for 3 days, then 2 for 3 days and then 3 tablets.  After only half an hour of taking the first tablet I felt an improvement and by the time I took 3 per day my pain and urgency had completely disappeared for the first time in 3 years.  This drug is usually for epilepsy but is also used to treat neuropathic pain (long lasting pain caused by damage to the nerves.) For me the symptoms of IC were, I suppose, due to damage to the nerves rather than any of the other possible causes.  Please try this drug as there are bound to be some of you who are suffering these debilitating symptoms for the same reason.  This drug has been life changing for me and I feel I now have my life back. I hope this helps.   

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  • Posted

    Hi Jacqui, I’m really really pleased that gabapentin is working for you.  I cannot take it (even though I know it can help) as it can cause weight gain (I gained 4 stone on pregabalin which is a very similar drug) and also because there is a slightly increased risk of pancreatic cancer with this drug and I have a family history of that.  So I continue to suffer! I guess everyone had to weight up the benefits and risks for themselves, but I envy you being able to take it! 
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  • Posted

    Have you tried marshmallow root? I have suffered for many years with IC, only recently being diagnosed. Until then I was treated for UTIs and was on constant antibiotics and cranberry tablets, both of which were of no use. I prefer to use herbs wherever possible and have started drinking  Pukka relax tea which contains marshmallow root. I have several cups a day and one at bedtime as I think that would stay in your bladder longer. I have found a massive improvement. I do still get occasional flare ups, ususally if I've allowed myself to get dehydrated or maybe drank something acidic but I no longer have the daily pain I was getting. Maybe worth a try?

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    • Posted

      Thank you for this information Kaz52 I am going to give this ago.  I am desperate.  I have had IC for a few years never knowing if it is a urinary infection or IC.  This last one is knocking me for six.  Nearly 3 months and the pain is awful.  Pelvic area so sore and can't stand my clothes pressing against it.  Doctor is sending me to have my colon checked but I am postive it is the IC.  4 HOUR journey to Cornwall coming up and I am dreading it.    Any advice would be really appreciated.  Thank you 
      
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    • Posted

      Sue, I'm sorry to hear you are suffering so badly. It certainly sounds like IC. I suffered very badly pre menopause and did see a very good doctor who prescribed me a hormone cream which really helped. I no longer use this as I was concerned about cancer risk. I still drink the pukka relax tea every night and I swear by it. You can get marshmallow root tablets but I found they made me feel a bit queasy but I think thats just me, I often react to tablets this way. May be worth a try? Also keep yourself hydrated as that really helps by diluting the urine so it doesnt hurt so much.

      I wish you luck and hope you get some relief soon.

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    • Posted

      Thank you Kaz I have ordered the Puka Tea. Like you I don't like taking meds and so many of the painkillers given out are so strong with such bad side effects. Take care.

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  • Posted

    After my previous diagnosis I did another urine test (the laboratory did not want to do it! why???). I went to the doctor with the results - the bacterial presence is negative (less than 1000). When I mentioned ic the doctor laughed saying that no one can make a ic diagnose without a specific examination. he said me that bacteria are hidden (????????). I do not understand what it means and has not proposed anything except antibiotic (4 months with 1 Monuril a week). Today I think to contact a urologist to make an appointment and in the meantime I do not know whether or not to do this therapy. Currently I do not have more burning but I always want to urinate (two drops). I have the impression that the bladder empties well and I can sleep at least 6 hours per night without peeing. Suggestions? Tips? Do you know urologists in London?

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  • Posted

    Jacqui - I was diagnosed with IC in 1995. I am always searching for anything that can help. Are still getting relief from Gabapentin?

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  • Posted

    Hi, yes, I've had to up the dose of Gabapentin but it's still working brilliantly, unless I forget to take a pill or take one too late. But it's still amazing how it works and I'm so thankful to have found it. I hope it helps you too or that you find something else to help you.

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  • Posted

    Very interesting. Have you posted this on the Interstial Cystitis Network? I'm sure they would love to read about your experience.

    Thanks very much!!

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