Please help - IC/PBS advice wanted...

Thank you for your reply! I wouldn't wish this on anyone but it is nice to know I'm not alone...sometimes it feels like it...

I will definitely mention the meds to my consultant - maybe I could try amiltryptiline instead of pregabalin.

I'm glad that you're getting on ok with the installations - it gives me some hope.

I've started to look into diets and will continue to do so.

Thank you so much x

ps That should have said `for you` not `or you`, Best Wishes.

Thank you for your response. Again, I'm glad to know I'm not alone. I'm definitely going to see if I can swap to amiltryptiline.

I've heard of cob but not looked into it. I feel slightly better already just through talking on here so I may join their forum too!

I've not bought any supplements. I've heard the sodium bicarbonate can be good?? Do you have any experience of this?

Thank you x

l think bicarb is more commonly used for bacterial cystitus, supposed to make urine less acid, so not aggrevate inflammation so much, but with bacterial your usually on anti bs that are killing  off bacteria thats aggrevating it, with ic its often constant inflammation, and bicar for many is limited, but worth trying a pinch in juice see if it helps, l do at times. 

when l joined they called cob a wee ray of hope, started by Annette who had ic very badly and ended up after years having urostomy, she and her husband started group to raise awareness, sometimes wonder when l see gps still not referring people, but they tried and checked out research abroad, none done in uk, so usa, germany,for new meds, we apparently make too  many mast cells producing too much histamine, what cimetidine is supposed to reduce, some think it auto immune others allergy, they used to call it hunners ulcer, after doc who discovered it, some still get hunners ulcer, cant imagine how bad that must be, bad enough without that. Some with ic get other related immune conditions, fibromyalgia, sjorgens, m e, no justice, but seems once you get one immune or allergy prob you can be prone to others, my ic is fairly settled but getting other symptoms now which could be myalgia or m e, which are just about as bad to get diagnosed as ic. A good pal said to me `well your just greedy arent you`, just joking, but l  must have been in a good mood as had to laugh, At times grumpy with it. but grateful l,m not back before diagnoses, improvement,  bad

memories.  Scuse ramble, its worth checking out c o b site, lot of info and specialist knowledge. If a member they send monthly mag with new research and letters experiences, phone no.s.  l hope things improve for you soon, as l and Winifred and anyone whoa had severe ic knows  its a very sensative area to get inflammation pain with. take care. 

Hi Lynne, l was told to try bicarbornate of soda by the uroligist nurse she said a "lot" of her ladies swore by it , but l tried it and it didn,t work just made me burp ! Then they discovered l had PBS so it seems it helps uti,s but not PBS . I had an awful pain in my side for on and off for years , l told my GP but never got anywhere with it . Its since finding out the real cause and treating that , that things have got better . I am co

nvinced that the right diet is crucial as there is a long list of foods that trigger episodes l seriously believe this and before this l use to think of these diets as fads , no more ha !! .

Hi, again, l got mixed up on my phone and have had to start again !

I was interested about what you said about the immune system , l have an underactive thyroid, which wad the start of all this for me , then l devoloped lichen scilirousis another ( they think ? ) immune disease ,l am on the forum for LS and a lot of those women have PBS and UTI,s so it lopks like a pattern ? A lot of research meeds to be done to try and find something that could give our immune systems a massive boost, but there does not seem to be much going on . It as also beem said om that forum that we should be careful of voming into contact with toxic substances eg. Hair dye . I have stopped dying my hair which l have done for years ,it was not easy going from long blonde hair to short brown /grey but l would rather that if it goes just a small way to helping beat PBS. The problem is nobody will talk about this in public and certainly the media dont want to know so getting research done is hard to acheive and as somebody on the LS group said the drug companies are making a fortune out of us so are not interested in finding a cure. Take care x

Hi Winifred, Agree that many of us have poor immune systems and get more than one immune condition, l started with allergic rhinitus and penicillin allergies 35yr since, then some detergents toiletries mainly diesel fumes, when l lived on valley top l was okish, moving into bottom of valley by busy A road, really bad allergy. the ic started, though immiedately after csection, then ibs, skin probs, and some are worse than me with multiple conditions,  sounds like your getting more than your fair share. In the many years of symptoms of ic before diagnoses l was reading and writing to experts, desperate for cause, l knew l,d a big prob with thrush, and went down candida regime, no yeast, what a pain, reading labels. l,d read about immune  tcells  Bcells, t from mothers in pregnancy, b we make lifelong, then it was down to mum, but cant be helped, my youngest son is allergic. l,d also thought about immune boosting, but l dont think medical profession take immune diseases seriously, more so if like ic, myalgia, sjorgens, me, hypo thyroid often go together, others, not heard of lichen till on here, but  not classed terminal, not much research or funding, there was no research on ic, classed as orphan disease, yet at worst disabling, Annette who started wee ray of hope group to raise awareness, had it bad, her sister worse and took her own  life  years ago when little knowledge or support, prompted Annette to starting the  group.  It has improved with knowledge treatments thank goodness. When l got ic diagnoses, it was like it was nothing to gp,s, meds, made light of,as if women thing.  l was glad of support group, but benafits difficult to get despite ic debility,many  public dont know or particularly care, as if its phycalogical,  as with m.e.and the rest. l got cancer many years ago and was lucky responded to chemo radiot, but with diagnoses l was flooded with mass help support, they all came to me, gp  meds, nurses, benafits people, l was grateful, but maybe l was lucky in the pain ill health treatment for me wasnt that bad and lasted 6-9month, honestly the suffering with ic far far worse, for me at least, and it goes on years. Huge relief diagnosis and l,d a good urologist, thank God its improved 90percent. l was thinking maybe a immune cell transplant, an athletes would be good, or one of these you see at 90 and fit as a fiddle. Good job l dont live in bejing, but l am quite fussy over food now, no processed, plain fresh but  weakness chocolate.toblerone, oh well, lve give up g and t, l,ll read up on l.s, anyway take carex  .

  

     

Hi Lynne, was glad to find your reply and Winifred's on here today. I've been suffering for a good few years with recurrent bladder problems most times no infection but the frequency urgency and pain in pelvis. Been diagnosed recently as having pelvic neuropathy after a mismanaged pregnancy 43 years ago, also I fell across a railing as a child and was never X rayed, so have damage from that. I too have M.E. I've had it for over 30 years they think, so I heartily sympathise...it does seem endless once our bodies become sensitised doesn't it? Was at theGPs yesterday having terrible pelvic pain and urgency, burning and pricking of uretha all really bad, I can't get much sleep with it. The GP sent off sample yesterday now got to await results before can decide whether to get referral to Urologist, but am really struggling. Had to have my appendice out 8 weeks ago,a surprise as we been thinking it was IBS! I'm 66, so that operation a complete surprise.GP thinks my body reacting to the op' so all down pelvic area going haywire.i wouldn't be surprised seems to be par for the course! I find these forums offer some real assistance sometimes it just helps chatting to someone who really understands how painful and difficult it all can be. Thanks so much for writing, I shall go find that c.o.b. Site.

If you want to chat about M.E.....no problem.

Yvonne

Hi Winifred, just found your reply to Lynne on here, and notice you said you have LS, I have that too, also M.E. And IBS and pelvic neuropathy. I've thought there is a connection with all these illnesses for years now. It would be interesting to know just how many of us suffer with them. Am presently struggling with a recurring bout of cystitis no infection in rotton pain, taking amytriptiline and those Cysteme sachets and pain killers, but not much helps does it? I seriously don't think anybody understands just HOW painful it is unless you have it. This I would say is much more painful than the appendicitis I had 8 weeks ago! Dr thinks the operation aggravated everything....I'll say! 😧 

Have you had any trouble getting the Dermavate OINTMENT we are prescribed for LS. I tried to get my prescription filled yesterday and the chemist didn't have it?

Kindregards to you Winifred,

Yvonne

Hey Yvonne,

I'm so sorry to hear you're suffering at present...in response to your query - I've been diagnosed with urethral pain syndrome, pelvic neuropathy and I suffer from a 'sensitive tummy' never officially diagnosed as IBS.

I'm hyper mobile and a pain specialist I've been seeing in London states there is definitely a link between that and pelvic pain - not sure what the link is.

My endocrinologist queried if I had chronic fatigue syndrome or me aswell. I think that there is definitely an, as of yet, unproven link between the conditions...most of them related to your immune system not liking your body!!

I really hope things improve for you. I find pregabalin, codeine and tramadol all help my pain but sadly nothing takes it away fully. I spend a lot of time in the bath. Fortunately I have a very understanding husband!

Xx

Hi EF, ha ha I too fortunately have a very understanding husband....SO lucky! My bath is a Godsend! Thanks very much for your fast reply, it does help to have that contact. I wish I could take Pregabalin...but am allergic (no surprises I'm allergic to tons of things) to Gabapentin and GP not happy to prescribe Pregabaline as closely related. I took Gabapentine for 8 weeks before I had a reaction,and it did help, but then the allergy was a severe reaction so had to stop immediately. We're convinced that there are links (unproven because of course there's no funding for research, ) between M.E. fibromyalgia, thyroid problems, pelvic neuropathy, urethral pain syndrome, Lichen sclerosis, Lichen planus, IBS, Cystitis, to name a few.

I take co-coda mol and it helps maybe a tiny bit, sometimes it's hard to tell isn't it? And it's the relentlessness of the pain we get that is so hard to cope with.  Thanks once again for making me laugh! I don't get out much at all these days so miss having a laugh with the girls.

Take care EF, I found that site C.O.B. it looks like it could be very helpful, just got to work out what to do without next in order to be able to afford to join. I'm already a member of 25% ME Group, they're very small and underfunded so I feel only right to support them whilst I can. Hope the rest of your week goes well!

xx

Hi Yvonne , sorry to hear your having a tough time at the moment . Regarding the dermervate l have had trouble getting it in the past , dont let the chemist try to fob you off with the cream , it just isn,t the same you must have the ointment l just went round the chemists till l found one that had it in stock . This seems to be a problem with a fee drugs l took cimeitine ( l think thats the wrong spelling ) and they suddenly stopped making it , so now l take Ranitidine 300mg and Amitriptyline for the IC .

I do think all these problems are linked to the immune system , l have LS , IC , and a underactive thyroid . My bladder problems are l think also caused by all the drugs l take , l have a heart condition and will always have to take drugs for that . But l have found that since they finally , after 10 + years found out the cause of the problem and gave me the right medication + the diet l put myself on , that " touch wood " things are lots better. Diet helps both the bladder and the LS , basically no wheat , sugar , alcohol , no fruit except blue berries , pears and pink lady apples, l do cheat with tea l have 1 cup a day , l have had the odd coffee when l have been out but l try not too drink coffee at all . Its not an easy diet butl think , for me anyway the results are worth it . The pain we get is the worst and its impossible for it not to impact on our lives , l feel that everything l can think of to do that hopefully will help needs to be tried. Docters often fob women off l find so its up to us sometimes to check out the internet there is loads of helpful imfo especially regarding drugs , docters dont mind if you tell them what you think after all g p ,s are not specalists and after years with this sometimes we know more than they do .Sorry for banging on , l just have strong feelings on this subject. I hope you track down the dermovate , drink loads of water and l jope you feel better soon . X

Hi Yvonne, So many simularities, although l do have typical ic symptoms, and they did start immediately following csection, 2nd one and planned, but woke with catheter full of blood and severe pain, unlike lst csection, and not typical for after cs, they did neglect what was proved to be baterial cystitus, dismissing my complaints about it being cystitus, for 2-3days, a mentalilty rife from some medics, l,d get many times over the years,finally test shwoed bacteria and anti bs given, which did clear it but then left with ic.symptoms, undiagnosed years, l,d already started with allergic rhinitus and allergy a couple of years before. l think there was some sort of pelvic damagee with cs, and def adesions before. The severe bouts, of intense pelvic pain and ill health thereafter, lower back terrible, couldnt stand in same position more than 5min without feelling l,d pass out. menustration aggrevated badly. l,d actually been told by chemist new meds l got from gp following severe bout that affected kidney,s, ld also get puss discharge when pain at most intense, or at least that actually led to easing of symptoms of pain, strange, the pill led to mass discharges, chemist told me pills were for deep seated infection, l,d nver heard of that.l did actually feel well for lst time in years following the intense course of anti bs and pessaries, but it only last a couple of weeks, triggerd by a rare bout of passion, due to feeling well, and away it went again, and l also started with gallbladder pain out of blue, along with severe heartburn indagestion out of blue, it turned out to be choicylitus, inflammation again, no stones, a very easy keyhole surgery rremoved gall bladder an its symptoms, again learn later that the gall bladder often goes along with problems in other areas, l think it and probably appendix are reacting to symptoms infections from other areas, they dont explain  at length what is happening inside your body and why, l think my pelvic area a total mess with deep infection nerve damage adesions, but this isnt expert knowledge just snippets of info, a puzzle lve not been able to really put together, l did have allergies before op, so maybe vunerable or mistake in surgery on top of that. Diagnoses of ic by scope, but l think the urologist did do something whilst scoping to improve damage before meds given, my gp at time, denied they can remove infection with surgery, but lve seen prgs showing them doing just that, its what they resort to when anti bs dont work. After that along with meds, amitrip, cimetidine it did improve, slowly, but l couldnt get those years back, and mum died within weeks of my diagnoses, she,d always been sceptical due to gps not diagnosing, the follwoing year my husband died suddenly, aneurism, so my improved health couldnt be shared, and the symptoms had affected mentally, which affected our partnership to some extent, put a strain on it, and no sex life, or little, but more importantly other affects after 22yrs together. l could never forgive my gp of those years for what l went through and affect of my partner kids, be it l tried to hide and spare my kids affects, by making best of reasonable times, outings treats etc. With age, simular to yours the ic is reasonably settled more niggly and achy pelvis than intense pain as it used to be, but over last couple of years more so 6months increasing fatigue aches and pains, l,d had the odd bouts of simular, weird days of  drugged like fatigue sleepiness, so now speculation if cfs fibromyalgia all along but got much  worse with age, as things do generally, waiting to see rheumy. l wake daily feeling .... a biug struggle of will to stand up after bed and function do essentials, Sorry for long monologue, most of time l try to push  it away, the bad memories, but so relate to what you state, recall it well, the burning almost as if its coming out of you, l recall once resorting to putting natural bio yogurt on me, lol, fanning, trying to cool as much as poss from outside, omg, and l also recall the pricking sensation, not many mention it, but its there, a dragging feeling with  it all, it does make sleep very difficult, jsut to go off, amitriptylen do help, as they are sedative and also reduce frequency, l was given them quite high dose as urgency, spent a week in hospital due to pain and nausea swelling a mess had tests scope laprascope vaginal scope, as , wilth wrong specialist and ward re gyny, so all clear and came home in worse state, theyd just aggrevateded it, so near mental on being home, constant pain heat, frequency no sleep dr out, amitrip given, they do help a bit, but not till cystascope near a year later l got decent improvement. The urologist in nice and helpful now reccomending dilation or urethra, which l might need if gets worse, but resist any procedures now as long as l can, but l think as decent and nice as he is, he always replies to letters from me with offer to help, but still l think he didnt tell me all he found, hinted at it, there is lying and witholding info,maybe to help gp out who was def negligent over years, now retilred. good job. We can get bacterial cytitus on top of i.c, but youll see what sample result is, but for me even after referral, l,d months to wait for scan, then months for scope, maybe they do it different now in straight for scope, judging by posts lve seen, but still months waiting, l,d def in a position to do it,pay to see urologist privately, it will speed up scope, l paid to see wrong specialist being led by gp to think it gyny, so achieved nothing of worth, lapracope aggrevated, ended up having a hysterectomy, again to do wth ic sym[ptoms and stalled seeing urologist over a year.  l,m glad at least your appendics op went well, bet that hopsital visit an anxious one, on  toop of op,  as i.c affects and need for nearby w.c. After my long tail of woe, l really hope you get a diagnoses soon, and if you are able l,d def pay for ury consultation, unless gp can mark it urgent for you. After reading replies, lve also sensative tum bit og scoped gastritus, omproaxle for that, helps quite a bit, but still there, l also used to have chronic thrush, again immune and damage reponse, When l joined cob it was called wee rayof hope, founded by annette who had svere ic as did her sister, who took her life in part due to ic and other things l gues, but led annette to start group for awareness and support, monthly mag, tv progs, gp awareness, posters up, meet up in regional areas, this l5yr ago, she herself opted for urostomy, and tht did help her a lot, but a few#year later got andrachnoonditus? another rare inflammatory condtion, causes spider like marks on spine, disabling. andyet there was no research in uk, they travelled to Germany and usa conferences for info, treatments, which has improved a lot and helped a lot. Her marriage ended, and she disabled to took over by c.o.b. WEll L Better  brign it to an end, l darent look how long post is, l really hope you get help soon and improve. best wishes, to all.

Hello Winifred sorry to be so long replying...been non too good past few days so away from computer.  Thank you so much for you advice too. I so agree with you that Doctors try to fob us women off...I mean diagnosing something as a 'complex illness' too darn right, if I had a pound for everytime I've been told that one!!

Hope you have a great weekend anyway, looks like rain again where we are...ah well.

xx

Crikey Lynn you've been 'through the mill'!  Thank you so much for sharing your story. I intend to join COB for definite and have also passed on that info' to my daughter who has a little girl who alas is only 11 and has never been able to hold on to her urine since being weaned.  She's now going in for the cytoscopy etc in July, phew...what can you do eh? Does make us wonder if there is also something genetic going on as well.

Once again many thanks for your support and help I really appreciate you contacting me, and sorry to be so long in replying as not been good all round the past few days so away from the computer.

Hope you have a peaceful weekend.

xx

l guess l have been through it, but history now and not something l rake up from recess,s of my brains, bad memories cant be dwelled on, negative, enough with the present ones isnt there. Plus reading these mbs it seems many with immune inflammatory conditions have multiple probs, and some worse than mine and so young to be experiencing bad health, at least l got a healthy childhood, teens twenties, mid thirties but had some decent years in between, but starting when very young l hope the llyhr old gets help and improves poor kid. l dont know how much is g genetic or envoiramental, bit of both l guess. For all they tell us about getting healthier and lviing longer, well l guess ssome are, l see them or know some in their 80s fit and active, but a lot are not, mostly chronic rather than acute probs.  l wonder, pity they cant prescribe 3 mon ths is a island paradise with clean air land relaxed lifestyle, see if that helped.  lve had fatlgue quite bad this week, today the best all week, okish with some energy, so extra clean up maybe short trip out, but wheather poor, grey and damp her, where i s the long hot summer they forecast, maybe starts in july , live in hope, my  hedge and shrubs growing like mad with rain  and humidity, theyll have to keep growing a bit longer. l also agree about the fobbing off, been there many times.   l know when l and others dont come on computer at all, means problems worse. and bad.  Hope you improve and also have a decent weekend. take carex