Newly diagnosed with IC

Posted , 4 users are following.

Hi everyone,

I am new to this site as I have only recently been diagnosed with IC.

After a number of years of infrequent UTIs, some worse than others, I started to have bouts of acute abdominal pain, problems passing urine, frequency and discomfort when passing urine. I visited my GP thinking that I had another UTI only to discover that my urine sample was clear. The first bout occured about 15 months ago and lasted for about a month. My GP had no answers but sent me for an ultrasound on my kidneys and a vaginal camera both of which were clear.

As the problem had subsided by this time I did not prusue it but found that on occasion I would wake in the morning with very mild symptoms which would subside if I drank plenty of water. I did begin to notice that the symtoms were often most likely if I had been drinking alcohol the night before. All was okay until last Christmas when the problem kicked off again thus causing anther miserable month.

My GP referred me to the Urodynamics department. I am 53 and post menopausal so I guess it was assumed that the frequent need to urinate arose from my age. All tests were clear and I was told that there was nothing to treat but it was suggested that I could have an over sensitive bladder and cutting out alcohol, which I had already done, caffine, fizzy drinks and cytrus fruits and juices could help. Wanting to help myself I did as suggested and all was fine until the end of May when I contracted another UTI.

The UTI was treated and I wasat last referred to Urology. I have since had a miserable few months with constant bouts of the usual symptoms with no obvious UTI. The bouts and pain seem to be getting worse and as I no longer drink alcohol have no obvious triggers.

Last week I attended Urology twice, once for a kidney Ultrasound which was again clear and a flow rate test which proved to be poor and once for a cystoscopy. The forst consultant suggested that I had Urethral stenosis, the second and over sensitve bladder\ Interstial cystis,. I was prescribed Betmiga and told to go back in a couple of months. I had a miserable weekend, in much pain and was evntually given diazepam to calm me down and enable me to sleep.

I am improving but the Betmiga is causing insomnia so am not sure that I can continue. I have also bern given buscopam to relax the bladder. Trying to come to terms with it all and am genuinely worried about the impact that this is going to have on the rest of my life.

Has anyone any advice or ideas?

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  • Posted

    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
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    • Posted

      Hi,

      Thanks for your reply. At the moment I àm struggling to come to terms with everything that is going on and, apart from the support of friends and family, am feeling a bit isolated. One of the doctes I saw recently suggested using patient forums so I thought I would give one or two a go.

      I have read your post and do see some similarities although my tests at the Urodymanics department and the vaginal cramera proved that I have no prolapse and that there is nothing wrong with my pelvic floor. Judging by your comments I suspect that you are a similar age to myself.

      I have viewed a few forums so far and read a number of personal stories. Many bear many similarities both to one another and to my own story. Many suggestions regarding both possible treatments and life style changes have been made although I think that you are the first person to state that the taking of Lyrica has been a help.

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    • Posted

      yes, i have been impressed with this medication,which is similar to Amitrypt,but it did take a while for it to work,,eg i was on 1 ,tds,but now i have reduced to just one a day for the last 12months,and i dont get side affects that i got when on Amytrip.,however it has done nothing for the frequency i suffer from,for which i am on Vesicare,...I think Lyrica is for the pain associated with IC......Hope you get some better help soon,why dont you ask your GP for different medication,such as I am taking,I think its a bit more expensive so they may be reluctant to give it out.you can but try,dont give up as there is help with this very nasty condition....take care .j
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    • Posted

      Thanks for your reply. Sodium bicarbonate had been suggested by others. Do you take it in tablet form, if so can you get it over the internet? My GP has agreed that it is a possibility but has advised trying too many things at once. I have been taking the Betmiga which is for the frequency for the las six days so am hopeful that it will help with this aspect at least. I seem to be able to tolerate it far better than the oxybutinn which I was given last year causing horrible palpitations! The buscopam I started on Monday so it is probably early days yet for that too. Once I can get an appointment with my GP I intend asking about either amittip or the lyrica. Did not know that they work in the same way. There is a generic form of Lyrica now as it is no longer on patent so price may not be quite such an issue.
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  • Posted

    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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    • Posted

      When l was diagnosed the urologists adviced to cut red meat, re the protein l guess, l never ate much anyway so no big loss. l also seem to have a natural aversion to many acid foods, fruit particulary, can eat melon,banana,s, pears non acid, candida can be a problem that irritates, l  Also use a pinch of bicarb in spring or filtered water, not tried marshmallow tea, tried chamomile, Will look for marshmallow to try. 

      Most with ic will try different supplaments and diets to see what helps them. All advice helps

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    • Posted

      Hi,

      I have taken your advice and ordered s9me marshmellow tea from the internet. How often do you drink it. Just once a day or do you drink a number of cups. It is fairly expensive, unless it can be bought from elsewhere that I am not aware of, so would rather not replace all herbal tea with the marshmellow tea. Thanks for any advice you can give me.

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    • Posted

      Hi there, I usually drink the tea 3 times a day with each meal.  When I'm feeling good I can take it down to once or twice a day. It is pretty expensive but I've found a supplier that keeps giving me a 10% discount and free postage if you spend over a certain amount.  Unfortunately due to the forum rules I can't say who it is though!  I also use a product that strips acid from your food which is handy when you want to be naughty.   It's in pill form and you take them just before you eat.  Again I can't say what it is because of the forum rules.  I'd put it in a previous comment but it was removed. I really hope the Marshmallow Tea works for you biggrin
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    • Posted

      Thanks again for the advice. I have seen a product that you sprinkle on food, as you say when you want to be naughty, mentioned on other sites so I suspect thàt I have an idea what the product to which you are referring is. I will start with the tea and see how I go then maybe consider the second product. I am into my third day of taking sodium bicarbonate. Not sure yet if it is helping as I am so up and down at the moment.
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    • Posted

      You're welcome.  I found that making a lot of small changes gave a little bit of relief everytime I changed something.  It's taken me 2 years to get to the point now where I feel that I'm in control of it.  My diet is pretty restrictive and I've got used to drinking only water and Marshmallow Tea.  It's boring but I'd rather that than the constant discomfort.  I figure that if I'm good 80% of the time I can afford to be naughty once in a while and have some meat and a pint of cider! (although bizarrely I'm ok on cider...can't drink wine though, especially red). And those acid stripping tablets help with naughty times.  Try to eat lots of green vegetables, advacados and almonds.  I also cut out dairy and swapped milk for almond milk which is really alkalising.  The more alkaline you can make your pee, the less irritated your bladder will be.  Bicarb should definitely help though - how much are you taking and when?
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    • Posted

      I am dissolving one teaspoonful in water each morning at the moment. I have seen tablets advertised on the internet but once again they are quite expensive so trying to keep the price down a bit.
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    • Posted

      If you can try and take a teaspoon full in a small glass of water before you go to bed aswell.  Overnight we tend to get dehydrated and that concentrates our pee making it acidic in the morning.  Taking bicarb before you go to bed can help quite a bit with this.  Ordinary Bicarb Of Soda that you get in supermarkets in the cake baking aisle is the best - it's only about £1.50 so is cheap as chips :-)
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    • Posted

      That is what I have been using. Had noticed fairly early on that I was worse overnight and first thing in the morning. Had assumed it was the do with dehydration so have been taking a glass of water to bed with me and drinking through the night. Will certainly take your advice and take the bicarb before bed too.
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  • Posted

    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. 

     

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    • Posted

      Thank you for your advice. I have viewed the site that you have mantioned and am considering regeristering. My husband suggested thàt I try some of the slf funded groups first as I think that he is a little dubious as to how much I will use them. I think that heis hopeful that this is all going to go away Nd that wé can carry on ournormal lives again. Unfôrtunately we were dueto travel to Spain on Sunday coming for our two week annual break but due to the rapid deterioration in my condition over thelast week have had to cancel. I suspect that our relationship is going to have a fair bit to go through. Although we havebeen happily married for over thirty yeàrs something as life changing as this couldbe is still going to take time to come to terms with. As loving and supportive as he is it is only natural that he is going to think about what he is going to miss out on due to my condition and I am going to struggle with guilt. I feel that I am beginning to ruin his life. Hopefully we can talk about issues as we go along and learn to adapt. At the moment I think my poor husband is struggling to see beyond the loss of his muçh needed and looked forward to holiday!
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    • Posted

      Hi, l,m sorry how its affecting you, l remember it all too well, pre diagnoses over many years, l think it depends how bad it is, were  not all the same, some its mainly frequency, others pain is worse, and sounds like your struggling getting it stable and settled, l was married 22yrs, but only a few when symptoms started, although we were close and he supportive it does affect, be it sex life, holiday, socialising,  l did feel guilty, though at times when the pain was intense could be furious with everyone, partner if he didnt follow house as l would when l couldnt due to flare up, ,if he let myseedlings die etc, , unfair on him,  but how  it affected, also with drs for not referring me sooner to urologist,and misdiagnosing or making light of it, just frustration at symptoms and restrictions, l did thankfully manage to keep much from my young children, 2 sons, as l knew how it affected me and didnt want them affected, but couldnt hide it totally, l couldnt be as active with them as l wanted to be, prior to it l,d walked miles, ran, climbed, country girl,  then couldnt, even running aggrevated, but think with me much was also to do with years of neglect as it got worse, l,d even had hystterectomy based on symptoms, and l,m not unique, others had also, but it made little difference, just removed one of flare up  triggers, menustration. Difficult to plan hols or social in advance, we ended up getting a camper van so could go on speck, if reasonably settled away we went.  But this was before diagnoses, once l got one and treatment it slowly settled, took a while, but 90percent improved.

      Annette who founded support group was very badly affected, and in fact resorted to urostomy, a last resort she went for, most dont and do get improvement with meds, diet. supplaments.  For you its early and its finding right regime of meds, supplaments, and coming to terms with it, hopefully you will improve in a while, but no one can help what happens to their health, so hope you dont beat yourself up over it.  Also helps if youve a good urologist, mine is very good, l,d a cystascope a few week ago, lst in 8yrs to check up, and l can talk and even write to him, he,s very understanding,and does write back and tells me to get in touch if it gets bad,  more supportive than gp, many people dont really understand either, so hope you get support, Best wishes. 

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