I have been diagnosed with ic it started in 2012 really struggling need some help or info

hi So sorry l have an idea how you feel, been there, horrendous when its severe as my ic was, and yours sounds to be.  Mine started with birth of 2nd son, 33yrs my lst son was 5yrs, l was ill following csection, sterilisation, lst bacterial cystitus untreated for days, then home ill, blood clots, mine also came in cycles, one week of severe intense pain, next moderate to severe, then more sore and achy, l ws  laid up when at its worst, nagging pain in lower back lower hips, soreness and heat  in urethra, vagina, frequency,  l couldnt even nurse my baby comfortably, used to love walking distances, it stopped that, found l couldnt run or jump same, even standing for more than 5min caused pressure pain and back locking up, at worst it tracked up to kidney area, also awful.  Mine triggered by menustration, which was heavy flooding, also intercourse made it worse  for days so that got less and less, struggled to do household jobs but  lucky l,d a partner who,d help,had the patience of a saint at times,  and like you it drove me mad also, bouts of anxiety, depression, fury, its part in response to symptoms and affects on your lifestyle, but also the nervous system runs through the bladder so that adds to it, l always tried to hide it  from my sons,bad enough my partner going through it with me, so we made the  best of the times when it was settled to tolerable, a week or two a month, to make them as good a times as we could for the kids sakes,  mine went on for years without diagnosis, and  its not that hard to diagnose once you see a urologist, mostly by them doing cystascope, they can see inflammation on bladder lining, and pin point hemmorages, or ulcers, but biopsy also confirms, it only takes a long time due to gps not referring soon enough, re usual womens problems attitude with some gps, but thought theyd become more enlightened, but not all it seems,my gp dismissive also and to me callous, if only they could experience it they wouldnt dismiss it so easily, mine was put down to post op,gyny,  hormonal, finally phycalogical, neurosis etc, by the time l finally got a diagnosis l was demented with it. and a lot of people make light of it, even some with moderate ic themselves, which doesnt help, we need it acknowledging, as all get it in varying degree,s of severity, depends on level of inflammation, if infected, ulcerated, all this was many years ago for me, since then lve had cancer, major ops and minor ones for other things, but all were easier  to cope with in comparison to severe ic.   l also got frequent thrush, aneamia at times, often nausea and off my food, fatigue, so unwell and unfit a lot of the times.  l hated the gp for being so casual or dismissive, l wouldnt put up with it now or in hinesight, l trusted the gp, and due to that had many years untreated, and l was also  turned down for i.b. just adds to the fristration hurt and anger. But with diagnosis l was put on amitriptylene which helps reduce frequency which aggrevates, also cimetidine a histamine receptor, as people with ic produce too many mast cells and  histamine which causes inflammation, urologist also put me in touch with support group, think its called bladder foundation now, it helped to contact other women, some still pen pals, they also give you masses of info, some use special diets to help, often low acid ones, l also use l,arginine, from barrett and h, shown to help on trials, and in recent years one anti b a day, kefalexin,  also trialled and proved to help, they dont even know why, but think possibly some infection deep in bladder wall, it was urologist who prescribed it for me. There are many other treatments,conventional ones used by urologists, and newer meds, also many with ic do use complimentry treatments. Many get improvement, l did, slowly over a couple of years, never as fit as before, but it reduced the pain by up to 90percent, and helped me to lead a more normal life.   You dont say if you were diagnosed by urologist or put on any meds, you should be, really outrageious if anyone,s left with no help medically or support.  One of my pen pals after 20yrs of severe ic opted for a urostomy and that is drastic, but she doesnt regret it, as she,s now pain free, and lives a normal life, but very rare few who need that, most do improve with bladder installations of meds, or meds taken orally, and complimentry treatments. If the gp cant or wont help ask him to refer you to urologist asap, dont endure it, no one should have to.  Think its either the cob or b and b foundation who can give you better info and support, theyre on site and have a mb, they can advice on good urologists in your area also.   So hang on in there,  it can be improved quite a lot with treatments, Best wishes.  

i am under the urology in chester hospital hun just dont seem to be getting any where good with the treatment and i dont know why i have woke up in agony again this morning was in tears to docs when rang them they giving me somethin better then ibphofen to help with the flame up as its getting wrs not better i told him i cnt deal with all this i am not getting the help i need its making me more ill and i have not long got over deep depression just feels like i will end up getting it again and i really dont want to . i cant eat like u also said as i feel sick every time i am in alot of pain but they said they cnt give me sickness pills as they clash with all the meds i am on so i hardly eat i cant sleep from the pain its driving me mad . they dont want to refure me for incontance even tho they know i have to change so many times through out the day its like they just dont undrstand also like you said unless they have it them selfs. My IC is sever they told me when they finally found it and they did say tretment might not be able to help it as my bladder wall has completly gone they said there is no way it will come back idk if thats true or not i just wish i had better answers and better help as its just making me mentaly ill also . But i really do appreciate you getting back to me i am just seeking other ppl with the same illness that can give me some input on it as i know i have to watch what i eat when i ca eat but i am not a big eater any ways i have 1 meal a day when i am not that bad when i am bad i cnt even eat a kids size meal maybe a few mouth fulls then i cnt eat from feeling sick its hard . But thank you so much for the info really helped me and best wishes to you also and take care x