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

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Hi i got diagnosed with IC in 2014 but my pain and symptoms started in 2012 took them 2 years to find it as they said its hard to diagnose. I am 25 yrs old now and still really struggling with this illness i get so much pelvic pain and kidney pain and lower back pian but the pelvic pain is the worst its hurts so much sad. This illness has messed my life up in so many ways i cnt do the stuff i loved to and i have two boys that i cnt play with the same way i was able to before i feel ill. i am in pain 5 times out of a week in agnoy cnt hardly move my partner has to do alot of things for me and my boys he takes care of me when  i am at my worst. My boys are 7 and 3 my partner is kinda like a carer for me 5 times out of a week as i am in alot of pain and cnt move around that good. I appliyed for ESA but they said i didnt get eough points and they say i am fit for work but me and my family all know and see i am not so they stpped all my money ii have had so much stress over last 2 years the docs just seem to not care and blow me off i am at my wits end and tryng to do what i can as a mother to bring money in my house to support my family but not getting the help i really need. I also cant hold my bladder do to this illness and have to change alot of times through out the day. Please i am asking for some information on what i can do as i really dont know any more i am getting depressed ovr it all and i have no doctors that want to help or listen to me Please any body if you know of any think i can do please message back to me and info big or small will really help thank you so much

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    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.  
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  • Posted

    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 sad. 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 sad. 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 sad. 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 sad. But thank you so much for the info really helped me and best wishes to you also and take care x


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    • Posted

      Hi Boo

      Dejavu about much of what you say, l can recall going into gps and feeling worse on coming out, tears at times, frustration and anger, at being more or less just left to put up with it, and l did, like a fool, for years. As l said lve had all manner of ops,chemo, but nothing was as bad as ic attacks.

      l think, just my thoughts not confirmed, but when its severe, intense, its due to deep seated infection, after one bad bout the doc gave me pessaries to use each night for 2wk, and l anti b a week for few weeks.

      The pessaries had iodine, and said anti bacterial, anti protozoa, anti candida, so lm thinking omg whats inside me, after a few days l,d masses of stuff come away, like crystalised yellow sugar, followed by masses of thrush, couldnt believe it, obviously a mess inside, and the chemist, not the doc, told me the meds were for deep seated infection

      l,d never heard of it. After two weeks l felt good, near to how l felt before it started, l found l could run, jump, feel more alive, it was just fantastic, what you,d taken for granted and had taken away from you, then to get it back. Sadly it didnt last very long, couple of weeks, either menustration or the rare event of intercourse and it was back as bad.

      Went on a few more years till cystascope and meds, which have helped, have you been offered amitrip, cimetidine, fairly usual meds for it.  Some with it get so much scar tissue from pin point hemorages there bladder shrinks, so they can only hold a small amount and need to go every 20-30min, aggrevating it, my bladder hasnt and still holds a reasonable amount, so unless aggrevated l can go 1-2hrs, but dont have the same level of pain, thank God, just get niggles of soreness with nagging pelvic lower hip back pain, but it can settle within a day or two

      My penpal with severe pain also didnt respond to treatment, she opted for urostomy, but had to battle to get it done, think she started by seeing a top urologist for private consultation, then battled on till he agreed, and that was ten years ago, probably far worse now, it is very radical, but she felt her life was that bad and treatments didnt help, she,d gone on 20yrs with it,she also demented with it, think it affects all who have it severely like that.  As you mentioned before its tighter for you financially being unable to work and being turned down for ib. Sometimes it can help to see a private consultant, l paid for one, but typical picked wrong type, thinking it was a gyny problem, and thats another tale, at that time it was about 70pound, think 3 or 4 times that now.  The b and b foundation helped, but at that time it was called wee ray of hope`, started by Annette.....who had it very bad, which prompted her to start support group and raise awareness, it did a bit, but as you know many, even gps, still dont understand how badly it affects.   Anyway hope you can get more info and advice on how to get more help, think there are other threads for info and support, good luck with it.

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    • Posted

      aww thank you so much hun for all the help. Was at docs again today he gave me diff meds that are alot stronger then what i had i am sitting here feeling all the diff side effects from all the pills i am on yet still in agony i guess i will just have to wait and see and stay on them for a few months see if they help give em time to work if not and still n alot of pain i will be asking for morphin strips as i cnt handle this pain i am normally good with pain but this IC is horrid the pain is unreal i would rather give birth 1000 times then have this illness but there we go cnt do nothin about it i guess bt keep trying diff meds and see what ones work best for me. Well again thank you for all the help you have provided for me and i hope you have a pain free and happy life tc xx
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