Newly diagnosed with IC

as in my previous message,i found that Lyrica 75mg really helped with the pain and discomfort INTERSTITIAL CYSTITUS,this medication takes a while to get into your system,but it does work above all others that i have been given.....However,i am still having to got up 7 times at night,sometimes more,and i take Vesicare for the OVERACTIVE BLADDER,which seems to help somewhat during the day,but not at night,which is a puzzle to the medicene men/women ,so i just have to live with it.....I have had 2 minor opps to stretch the bladder,and stitch back the prolapse,which apparently causes these type of conditions if you have had several children,so i was told.....I used to and still do on occasions get the awful painful urge to go to the loo when traveling in a car,so i have to know where public toilets are,before starting out,even to the shops.....it is a miserable condition to be sure,,and i hope some finds a cure for it .....I do not know how mine started,except i did use an expensive  PELVIC FLOOR EXERCIZER,before this condition started,and i dont think i used it properly as afterwards i got extreme pain and soreness,so stopped using it,and the £65 piece of equipment was never used again,i did have the signs of prolapse which is why i bought the thing,trying to help myself but it made things worse,so i think thats how my IC started,and this was over 5 yrs ago.......hope you soon get some relief,and helpful ideas......j

Hi there, I'm really sorry to hear of the pain and discomfort you are having to deal with.  I have always suffered with UTI's and a couple of years ago I started to suffer with Interstital Cystitis (self diagnosed as I have all the symptoms).  My doctors were no help at the time and I did a lot of research online.  I am now in a position where I am "managing" the situation and what has helped me is making a lot of very small but quite significant changes without having to take any drugs.  1.  I cut out caffeine completely - including green tea -   I now only drink fruit herbal teas 2. I drink filtered water as tap water made my bladder a little sensitive 3. I went vegetarian.  The reason for this is acid.  If your system is acidic - your urine is more likely to be acidic.  If your urine is acidic - your bladder is irritated.  I did alot of research on the acid/alkaline diet which was really helpful. Meat is very acidic.  4.  I cut out sugar & bread.  Candida (thrush) thrives on sugar and yeast and candida makes IC a whole lot worse. 6.  Drink Marshmallow Root Tea.  It coats the bladder and helps it to heal.  The best type is in loose leaf form.  I drink it 3 times a day.  It's brilliant and tastes good - like a weak vegetarian gravy. 7. I use Bicarbonate of Soda when I can feel my bladder "twingeing" which is usually because it's overly acidic (sometimes for no good reason)...its cheap and gives immediate relief.  All of these things together have helped me no end.  Obviously what works for one person might not work for another but I hope you might find relief from one of these ideas :-)

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l started with a bacterial cystitus following csection, took them a few days to treat it, the typical symptoms of that cleared but thereafter had what l would later find out were ic symptoms, took a lot of years of frequent pain and soreness heat stinging in  pubic urethra lower back  frequency, poor heatlh, l,d bouts of aneami, thrush,  which blood test urine samples xrays showed no reason for, it wasnt that unusual way back for it to take years for diagnoses. Urologist and scope easily diangosed it, l was prescribed amitriptylene, which calms nerve endings in the bladder which is inflamed, it also reduced output and does have sedative affect, but for ic patients only needs a small dose, 5-10mg per night, l tend to take it when l feel a need, re niggly urethra or 2 to 3 nights with little sleep, also given cimetidine histamine receptor, due to ic patients producing too many mast cells and histamine. l,m also trying d mannose a supplament that reccomended, thre are many prescribed meds and supplaments adviced to help with symptoms. Urologists will also do intillations into the bladder, cystiat, and bladder stretches, depends if the bladder has shrunk and what capacity it can hold. Its still not known if its auto immune or allergic reaction, quite rare. Its affects can be far worse and wide ranging than many people think, some gps included, why l and many in past had it for years before gps took seriously, just usual womans problems phycalogical, and it does affect you phycalogically due to severe symptoms, plus nervous system does run through the bladder. l couldnt even begin to explain the affect of me physically and phycalogically in the years before diagnoses treatment, bad memories, due to symptoms but also affect of lifestyle, restricting, partners, intercourse can trigger attacks, trying to stay active for your kids. Treatment has reduced about 90percent of symptoms for me, and most l think.Many also go on acid free food diet, l also use l,arginine, those with ic try all manner of things, some use acapuncture, trial and error of what suits and settles it for you.  Some urologists now prescribe a daily anti biotic, as research showed this helped many with ic from flare ups, l was prescribed kefalexin daily and it did help, but after several years on l developed nausea and scope show inflammation, so stopped it, but can take the odd one if l feel niggles starting.  l tried to get inapacity dla benafit but was turned down, as they like most underestimate how badly it can affect.  But it can be controlled with right meds, so most can live a normalish life with it.  It might take you a while to deal with physical and phycalogical affect, but you can get there.  When l was diagnosed the urologist gave me literature about support group, `wee ray of hope`, started by Annette who had it severely, to raise awarenss and support, they now taken over by c.o.b cysitus and overactive bladder foundation who are on web and do have forum with lots of specialist advice info, you can take membership and they send you new advice and research findings for new treatments, aslo provide keys which give priority for wc,s if needed when out and about, it wasnt even researched in uk for long enough, at all, theyd to rely on usa germany for new findings. lve rambled on long enough about ic, such was its affect on me, but it can be improved a lot to make life better, bestwishes.