How I beat ten years of severe cystitis

By Gaynor rated 8.9 out of 10, viewed 124136 times
In categories: Acne; Cystitis; Depression;
I suffered from chronic cystitis for over ten years. I first started to get it severely from the age of nineteen. Almost every week I would have an attack, which would last for 4 hours, and then the rest of the day or night to recover. Sometimes an attack would last for three days.

My symptoms were shaking, sweating. The extreme discomfort in my bladder took over my whole body. It felt like I was passing shards of glass when I went for a wee. Sometimes there was blood.

Sex made my cystitis worse, as did late nights and drinking. But it would happen even without these. I didn’t know what to do for years. I didn’t eat well, didn’t drink much water, partied a lot. I was sad in my personal life, also an angry, hot headed person.

Years later I still had it. I was at my wits end. I was getting cystitis nearly every day, and it was making me severely depressed. I became housebound for weeks on end. Doctors would take urine samples and prescribed yet more antibiotics. I drank cranberry juice, and took sachets for cystitis relief. Sometimes it would go for a few days, but would always return as bad as ever.

I decided to lead a healthier lifestyle to see if this would help. I drank pots and pots of green tea, ate raw vegetables, soups. I went swimming three times a week. My cystitis remained, and if anything it got worse. I also started getting acne, patches of boil-like spots centred on my cheeks and neck around my glands.

I did research on the internet about cystitis, and discovered there are two types. Possibly I had lack of L-Arginine, an amino acid deficiency. I started taking a daily supplement, which definitely helped. My cystitis subsided a bit and wasn’t such a constant problem. I also realised that I never had smelly urine, or discharge connected with bladder infections, which can be a cause of so called “honeymoon cystitis”.

I went away for two weeks for work. I was extremely busy, and my daily routine went out the window. Strangely I was feeling much better, my cystitis completely went. On my return home, within a few days my cystitis and acne were back.

I distinctly remember when the penny dropped. I woke up in the middle of night, with the certainty that it was tea. Plain old tea. I was allergic to it, and it was causing my cystitis and acne, (and possibly) the amino acid deficiency I had. Everything made sense, and I woke my partner up to tell him. I had always drunk up to 6 large mugs of black tea, or green tea, each day. I did more research and although I am convinced that I have a food intolerance, I also discovered that the tannin in tea can coat the lining of your gut and interfere with absorption of vitamins and minerals.

I no longer drink tea, other than the occasional cup. Two years later, I am almost completely free of cystitis, and my skin is perfect. I stopped taking the L-Arginine supplement, and I might get the odd, rare attack, but no more than many other women. I am a different person, happier, outgoing and more relaxed than I ever was.


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Comments
By Harriet, 22-Apr-2010 12:59
I am constantly getting cystisis and i have tried to pinpoint what it is, i have had antibiotics which does get rid of it but the soon comes back, its horrendous and i would do anything to never have it again. I am desperate to find out what triggers it, any advice?
By Gaynor, 04-May-2010 15:48
Hi Harriet, hope this you get this reply. Antibiotics didn't work with me either because the cystitis I had wasn't a germ. Anyway, I found the amino acid food supplement L-Arginine helped (from any health food shop), 1 or 2 a day, night time was better as that's when it's worst for me. I believe that I have an amino acid deficiency and that this helps (though I haven't taken it since becoming pregnant and breastfeeding). Also I take cantharis, a homeopathic remedy. Have you thought about any foods or drinks you may be allergic / intolerant to? Some people are also sensitive to condoms which can aggravate. I had my urethra checked to see if the hole was too small (though this wasn't a problem for me). As I said in my story, sensitivity to tea caused a big part of my problems, so maybe try a food diary.
By chloe, 14-Jul-2010 07:19
i hav had cystitus
By Chloe, 22-Aug-2010 11:53
Totally agree! Couldnt agree more black tea is the trigger of cytitus most definatly. Goodluck everyone
By trin, 01-Feb-2011 08:19
i dont usually drink coffee or black tea (only when there's nothing else to drink). i drink hot chocolate and recently(about half a year ago) my bf discovered peppermint tea for me because i was contantly sick at that time....and not only it removed my sickness, but i also noticed it really helps me to clean up me bladder and i just feel great!
By Tig, 14-Mar-2011 14:36
I have chronic cystitis and I don't drink anything except water, and occasionally fizzy or alcohol (but in the past year I've cut down to barely a glass of wine a week in hopes it'll calm my problem down). I've tried altering my diet, and antibiotics often don't work more than a few days. I also noticed in between relationships I still had it at the same intensity which led me to believe sex wasn't an issue. It's affecting my work life, my friendships and my overall mood. I feel like I can't commit to anything in case I get to it and I simply can't do it, and I don't want to let my friends or partner down.
By Kiwikchat, 02-Jul-2011 00:06
I had cystitis on and off for years, it was complicated by the fact that I worked on boats so access to antibiotics was a times limited and I had to keep my own records to show to doctors as I was constantly travelling. Antibiotics stopped working for me. What helped me: - no sugar diet, including sugar in processed foods. (I have now reintroduced it but I was off it for at least 6 months) - 2-3 cranberry tablets a day for 6 months (I now take only two a day. - lots of water, at least 8 glasses/day, no alcohol or tea or coffee for 6 months (I now have the occasional coffee but still no alcohol or tea) - ovestin (oestriol 1mg/g) topical cream, tiny amount applied to the perineum (skin between vagina and anus) about twice a week. I still use this today, if I forget I get a UTI, I think although I am only 26 that I have low estrogen (also indicated by quite a dry vagina, TMI , I know) and it just tips me over into the okay amount of estrogen. My doc said that she usually prescribed it to menopausal women who suffered from UTI's. Hope that this info is helpful to someone. Good luck in getting rid of the UTI's! :) Good luck.
By anon, 05-Sep-2011 20:24
i have it right now and googled it for advice. never felt anything more painful. have had it a few times before an it never doesnt shock me its not the kind of pain you can get used to. usually it goes within a few hours, i drink a LOT of water, green tea an cranberry juice to 'flush it out' and take sachets and paracetamol too. does smoking make it worse? i had a cigarette earlier and i swear it triggered it again
By christine, 21-Oct-2011 11:04
Smoking can trigger an attack and also tomatoes, I don't smoke but I ate excessive amounts of tomatoes, I've cut down and my attacks have been minimal compared to what they were, I'm also going to cut down on my coffee intake now.
By Racheal, 26-Oct-2011 15:30
I also have it right now and googles for advise.. I have always had cystitis but this year iv had it pretty much everyday! I find as soon as I get the slightest feeling of cystitis I have to down atleast 3 huge glasses of water and it can go straight away, as if I don't it gets worse and worse untill no amount of liquid or painkillers will help. It really is so stressful and I keep thinking this has got to have some effect on my bladders etc in the long run. Doctors haven't helped so far, just keep prescribing antibiotics which don't even touch the sides. This has definitely effected my relationship and sex life and I just wish it would piss off!! Lol. Recently my discarge has also thickened and has a bitter scent which i think is to do with the cystitis. Basically I'm going to invent something to save u all!
By Kim, 10-Dec-2011 14:57
Does anyone else feel that it makes them feel very down?
By Kim, 10-Dec-2011 15:31
Does anyone else feel that it makes them feel very down?
By Faye, 04-Jan-2012 03:37
Gaynor i have the same as you. all started when i was 19 i am 23 now and still get it. i have had operation to resolve but it came back!.. went the doctors last week and he sending meto another specialist. i am keeping a diary of what i eat, drink and do for when i go see him. i wish it would go away! x
By Pam, 14-Mar-2012 04:28
Check out salicylate foods. They seem to make me more prone to cystitis.
By Claire B, 09-Apr-2012 04:45
I have cystitis all the time. Recently I have discovered the magic of cranberry tablets, I take one a day. Thing is if I don't take them the cystitis is there but as soon as I take one it seems to go. I suffer from depression also but stopped taking any medication for that due to side effects. I have only just recently, after YEARS of testing, discovered that I may have COELIAC (wheat and gluten intolerance) so I am hoping that treating this and changing my diet may help the cystitis. I hope so as I eventually would love to have a normal sex life as having cystitis has put me off sex. I feel for anyone who has cystitis I really do. Only cranberry tablets have helped so far. Doctor recommended Lemonade also for the sodium in it - no benefit for me. Oh I am a big tea drinker, this may have to change. Great article.
By Amy L , 26-Apr-2012 02:24
I've had cystitis since I was 8 and now I've been getting kidney infections and swollen kidneys since last year. I'm nearly 22 and I'm getting to the point now where I really cant deal with the constant attacks of pain that I'm getting. I thought it was sex, but it happens no matter what. My doctors said it was honeymoon sex, I tried and tested, and it wasn't that. I used the sachets, they numb it to a certain extent... but still, they commenced. My recent attack has lasted almost a month and I've been to the doctors twice, have been given 2 antibiotic types, and the Doctors just aren't listening. I've been going to the same doctors for years and years and years. And they are'nt listening to me. And I'm starting to lose my mind with it. I don't have the money to be able to get a new set of antibiotics, that aren't going to work, they are costing me nearly £8 a week, for them to just numb it, and then as soon as I come off them, I'm back to the burning, the aching, aching kidneys and lower back, the fevers, the sickness, the tiredness. I drink cranberry juice, water, fruit juices, cordials, so I don't get attacks from fizzy drinks, I barely drink. I've tried all sorts, cranberry tablets, cranberry lozenges etc, but they've not done anything. I'm getting so depressed by the whole thing, I just cant deal with another 14 years of this, I seriously can't. It's taking over my life; my friends ask me out, I can't go because I'd spend the whole time hovering around the loo's. If these new antibiotics, don't work and I go to the doctors and they say 'Oh, we'll try out a new course and type of antibiotics' then... all hell will break loose. I can't handle not being listened to anymore.
By Ella, 14-May-2012 22:01
A health practitioner I greatly respect recommended D- Mannose. I have ordered it online but not received it yet. When doing reserach on it I discovered a website with lots of info - and it said that cranberry can for some people initially help, but can then make UTI a lot worse! Happened to me - but I did not know to blame it on the cranberry. Check out http://sweet-cures.com/cystitis-treatment-method.htm.
By roxy, 16-May-2012 11:40
Hi, I have had chronic cystitis symptoms for 12 months now started May 2011. I went to the Dr she did a urine dipstick test and urine sent off, nothing found. Was given Nitrofurantoin 3 days, did nothing.. pain was still unbearable weeks later so I saw a different Dr he sent my urine off, nothing found and gave me Nitrofurantoin for 5 days, did nothing. The pain continued, bladder pressure/pain, urgency, feels like your bladder vaginal walls are being pulled down, uncomfortable sex like stabbing pains etc. My husband had enough and while at the Dr's himself got angry with our Dr and demanded they do something has I'd lost 10 pound in weight at that point and up to now have lost 19 pounds since being ill. So I had a blood test a scan and vaginal internal twice - all normal. It took months to get an appointment at the hospital which have'nt been no help, just saying 'It's what women get and I don't know whats causing the burning etc!' (sex when we can do it, can make the symptoms worse, aching burning vagina etc) January this year back at the Dr's and was given 3 months of Trimethoprim - take one at night. In April, 2 days after sex I suddenly got intense excruciating symptoms, for 2 days the pain continued but because I'm so used to it, I carried on has normal. 4 days later my body started to ache and I began shaking and cold sweats, headache/dizzy and it felt like I had flu. Back at the Dr's she did a dipstick and it turned purple, she gave me Amoxicillin then phoned me 3 days later to say I needed Amoxicillin/clavulanic acid instead for the bacterial infection. I still get bladder pressure/pain, bloating/constipation and still don't feel 100% ok. I have started to take D-Mannose once a day and Echinacea once a day after getting cold sores with being 'run down'. I drink water, pee/wash after sex and just pray this torture goes away, it ruins your social life and just about everything and makes me depressed! I have sympathy for a
By Roxy, 16-May-2012 11:42
..I have sympathy for anyone going through this - I don't think Dr's have any answer... or just don't listen.
By not alone, 13-Jun-2012 14:32
Quercitin is the new L Arginine. It is anti inflammatory and very good for many diseases. It can be used in conjunction with L Arginine. 1 capsule 1000mg. Make sure it's not super Q as that has Vitamin C and citric can be a trigger for IC. Also, soy products are BIG triggers as well. I am realizing now that everything I eat is made with soybean, soy lecithin or soy oil. I have had IC for 10 years after coming down with the flu. First I cut out all artificial sweeteners, another huge trigger, most caffeine, chocolate, citric and now soy. Look into the food guide on the net for ok and not ok foods for IC..Hope that helps.
By Nets65, 14-Jul-2012 11:56
I have suffered from cystitis and acne for years. Nothing worked including antibiotics. I found when I drank tea it would make the symptoms worse so cut it out completely. Not only have I not had an attack of cystitis in six months but my acne has cleared completely! I had 2 cups of tea few days ago (just to make sure) and I have got 2 painful spots on my face. I also take Vitabiotics Cranberry capsules. Anyone feeling desperate, I highly recommend removing tea from your diet.
By Char, 28-Jul-2012 03:51
When I was fifteen I ended up in hospital during a school trip in South Africa with a fever, severe dehydration and kidney infections. For the first year after I never suffered from anything and then from the age of sixteen onwards it's never stopped. I'm twenty now and the cystitis is occurring atleast once a week. The attacks are bad and I spend my time waiting for my next one. It's made me seriously irritable, particularly to the people I care about and causing my depression to worsen. The doctors seem useless, I constantly ask why I get it so frequently and they reply with 'you're unlucky, a lot of women do' (classic quote). I've been put on all sorts of antibiotics and can now only take nitrofurantoin as arganine(?) made it worse and trimopherapin had no effect. I literally don't know what I can do anymore, it's ruining my relationships. Concerning sex, I'm certain that was the trigger to begin with but now it can be completely random. It's come to a point now where I struggle to enjoy sex, if I want it at all due to the fear of the pain after (if I do get any obviously). It's taking a huge tole on my boyfriend and I. Does anyone know of any long term courses of medication to cure it? And I was also wondering about food diet books (although I'm already vegetarian)?
By Guest, 10-Aug-2012 15:00
Please try d-mannose guys. It's relatively cheap and very easy to use. I used to get uti's a lot and it has dramatically helped my condition. Now when I start to feel that old feeling of a uti coming on, I take a heaping teaspoon of it every couple of hours for 2 to 3 days and it is gone. Even after the first dose or two it helps to subside most of the symptoms and I have renewed energy. Please give it a try and good luck to everyone!
By not alone, 27-Aug-2012 16:51
As far as making you feel down, that is totally normal. Who wants to feel like they have to pee every second of the day..Eating is a huge event, especially if your not aware of your triggers. So many products are inflammatory to the bladder. When my cyctitis flared at its peak, my skin broke out just as bad..Now I am finally realizing that foods play a real role in causing the inflammation process. I stopped eating soy , caffeine, only drink decaf now. No refined sugar, only coconut palm sugar. Artificial sweeteners and flavors are a huge upset to the bladded..My skin has cleared up w/ some topicals (epiduo) and erythromycin benzylperoxide combo. Read your labels ladies. Soy is for sure what caused me alot of issues as well as artifcial sweeteners/ flavorings. It may take some time to figure it out, but peeing less than 10 times a day is way better than 10 plus times any day...
By not alone, 29-Aug-2012 06:36
http://www.ic-network.com/diet/2012icnfoodlist.pdf here is a food guide chart char..if you are a vegetarian, you might want to re-think all soy products..it's a huge trigger for cystitis..everything has soy in it or soybean or soy lecithin.. g luck
By I'm glad you liked it. I also love the Survival Gu, 15-Oct-2012 17:00
I'm glad you liked it. I also love the Survival Guide but haven't read it in a while. Probably should do a re-read and put that up on there too. I'd love to read your blog too. My email is . By any chnace are you a FB friend and did I send you my inbox message going around to spread awareness for IC via FB posts much like has been done in the past for breast cancer? If not, I can send it to you. I also am having a contest a week to win an ic shirt with whomever of my FB friends shares my IC info and gets the most likes will win. One each week through November! Let me know what you think. I greatly value any feedback you have to give! Hoping for a pain free, symptom free day!
By Emma, 05-Nov-2012 13:50
im 19 years old and ive had cystitis from the age of 16, ive been to the doctors many of times, and give me antibiotics that never work, also the doctors dont seem to care as one said to me 'if we can't find anything we cant do anything' and i thought that was horrid becasue it seems to be invisible but i have all the symptoms and just recently have seen spot of blood in my urine and a little blood clot today. i just want to be pain free!
By Jackie, 12-Nov-2012 03:09
I am just out of the doctors and I have been given another antibiotic something needs to work I can't cope any more, lack of sleep depressed, skin break outs and my sex life is ruined plus its starting to effect my relationship and how I feel about myself. I do everything right my diet, wear lose comfortable clothes, pee before and after sex everything. Tried cranberry tablets plus other ones. Can't go swimming or wear a swimming suit or thong. So I feel for everyone of you writting ok this page
By Miss_G, 19-Nov-2012 13:39
I sympathise with all the ladies on here..came across this while googling cystitis for the millionth time looking for a miracle cure! Same with me i am given antibiotics (although they are reluctant to give me them now) and i feel i get it every week almost now. I mainly get it from alcohol and intercourse. I can give up the alcohol if i need to but the other i dont want to effect my relationship. I tried D-mannose before and didnt notice much difference think i may get it again though as will try anything. Nice to know we arent alone in this awful problem - people who have never had it really dont have a clue!
By M C, 09-Dec-2012 07:32
Searching for an answer in desperation. Depressed,cystitis and nausea. Seems to never go away.Seeing doctors more and more and going bancrupt in the process. Thanks to everybody mentioning tea.I am a tea addict and I am definetely cutting it out from NOW.
By Miri, 13-Dec-2012 07:27
Hi - I have been getting cystits attacks for 7 years. My known triggers are alcohol, sex, citric fruits. My suspected triggers are tea (after reading these messages) coffee, tight clothing, spicy foods (maybe) anything fizzy in general. I have been given 12 antibiotics in the past 6 months. It completly wipes me out - the pain ranges from intense (with a strong attack when blood in urine) and when the attack is not so intense it leaves me with no energy and overall feeling of being under the weather and leaves me depressed and extremely tired. Crannberry suppliments help as do large amounts of water. When I keep my lifestyle calm and relaxed I dont get so many but when I over do it work/partying it always comes back. That tea is a trigger came as a big surprize to me. .....Thankfully chocolate seems to be safe! :)
By Dani, 19-Dec-2012 15:33
Try hiprex and dmannose before sex and again the morning after. I used to get UTI's after sex every time, but not anymore.
By jayjay, 01-Jan-2013 15:18
hi ladies, I too am constantly googling for a cure, somebody needs to invent one! mine started last year, I went through a stage of constant UTI's. after lots of antibiotics and a strictly regimented sex regime (gotta pee and wash afterwards!) I managed to stop the UTI's... but the symptoms never went away!! literally I haven't had a UTI for a year now but every day since my urethra stings constantly, and it always feels like im on the verge. exercise really triggers it badly for some reason, so I've put on 2 stone in a year, my jobs on the line cos I call in sick so much, I never go out with friends cos I'm scared of alcohol, and sex... well you all know the score!! its ruining my life and all I get from doctors is 'well you're young' ... ummm I don't think its normal for 24 year olds to be in pain all the time!! gonna try cutting sugar out and report back! good like girls and you're not alone!
By claire, 30-Jan-2013 09:23
Hi everyone, i've been suffering from severe cystitis from the age of 15 (now 23) i am convinced not enough research has been done about it. My main trigger is sex and the symptoms usually take 24-48hours afterwards to appear, cystitis then takes 5-10days to disappear. It doesnt always have to be sex though, some weeks i have a constant twinge. Its ruining my life, i write this from the toilet as i am currently suffering. Sitting on the toilet seems to be the only slight relief from the feeling, sometimes i have to sleep here (putting cushions on a chair infront of me). Cranberry tablets do help but do not cure, i saw a specialist who also advised to smear probiotic yoghurt on the vagina (which i am yet to try). More research needs to be done. I am also always googling operations that will cure it but there is nothing. We shouldnt have to live our lives like this. If i ever find a miracle cure i will let you all know!
By Jade, 03-Feb-2013 07:09
Hi everyone. I suffered from cycstitis from 8years old now nearly 18. I am a young mum and ever since having my son I have suffered with cycstitis I have been put on antibiotics for the rest of my life as some UTI's send me into hospital. I drink a lot of coke eat loads of crisps and chocolate and unhealthy foods I'm at a good weight hardly put any on but its feels impossible to give up the way I eat as its like an addiction I smoke occasionally but usually only when my sons in bed. Its ruining my social life and my relationship with my other half. I also suffer with depression due to a lot of stresses in my past and suffering with this makes me feel more worse :(
By Jessica, 18-Mar-2013 14:31
Ladies, I am so sorry to hear you are all suffering :( I too have been having a bad year for UTIs and am glad to read all the advice on here!! I feel like peeing has totally taken over my life ... I have to drink water all the time. I'm pretty sure I pee three or four times more than the average person. Even if I don't have a UTI I still sometimes have discomfort when peeing or even pain afterwards. It's like I'm always aware of it. I does make you depressed and sad ... it's good to have someone who understands. Only one of my friends suffers like I do. I've recently decided to cut out everything I drink but water ... and reading on here it seems like a good idea. I hope you are all finding things that help you!! I just wanted to write and say I'm glad to have found people that understand how hard life is with reoccuring UTIs!!!
By Lw, 11-Apr-2013 12:47
I have had cystitis since aged 8.It has been much worse the past 8 years.I was found to have a tight bladder neck (as did my mum and her twin sister) but having ut stretched onky oartly worked.am now on fantastic drug- imported from USA by my urologist as not licensed here.It recoats the bladder for those with interstitial cystitis and is called Pentosan Polysulphate Sodium and its a bloody miracle drug!no more sachets.no pain when have to hold wee in on long car journeys.can even drink coffee!a word of advice- menopause started recentky and HrT patches were fine when just oestrogen administered but the mixed progesterone/oestrogen (recommended to stop endometrial cancer ) massively flared the cystitis.
By maria, 06-Jun-2013 14:30
DIET, DIET, DIET. I suffered from cystitis in my college years and it even caused me a rheumatoid condition when my infection went to the kidneys and my immune system over reacted. When I change my diet because of my gastritis/colitis to a naturist diet and did some researched later on discovered that 80% of your immune system is in the digestive system, so if you take care of your diet your life can turn fully around and it did. All inflammation starts at the cellular level and your diet either provokes it or helps you against it. And all anti-inflammatory diets or foods help all inflammation conditions. That's why if you do a good diet you will see the benefits not only in area but in an other. My research and experience prove to me that a variation on the paleo diet is the best to minimize any inflammatory condition (cystitis, bronchitis, asthma, colitis, gastritis, dermatitis, etc): protein (fish, better deep cold water fish, poultry) no grains starch (mainly as it is the most inflammatory), wheat, corn, no dairy, no processed, canned foods, no condiments, no legumes, no sugar, no high sugar or citric fruits, no inflammatory vegetables (broccolli, cabbage, any peppers, and any other vegetable that you feel inflammates your stomach). With water between meals, 2 glasses of luke warm watter half and our before breakfast (major anti-inflammatory), an a strict meal schedule (7.30, 12, 5, late snack, no more that 4 hours of no food), no sleeping after 10.30 pm (the immune system best regenerates along with all bodies systems between 10pm and 2 am). Learning to manage stress of any type is very important because as it debilitates the immune system. Walking, jogging, swimming, inclined statoniary bycicle is great to send circulation into the digestive and urinary track. No manage stress we have to work in watching and controlling ones emotions, ideas, thoughts, actions, and what we drink and put into our mouths. This diet helps as it does not irritate the urinary t
By J burgoyne, 23-Aug-2013 00:30
I have never had cystitis before,then I started drinking a glass of soya milk before bed,because with ordinary milk I get a lot of catarrh.tha soya really help my condition but I started with cystitis,I`ve put it down to the soya,that is the only thing I have changed in my diet.I feel sorry for you ladies who get it all the time
By Anne, 27-Aug-2013 19:14
Try D Mannose Two tabs ( or 3/4 teaspoon) three times a day while you have symptoms, then twice a day. It is a sugar that is not absorbed by the GI tract and is excreted by the kidneys. it pulls the extra bacteria out of the bladder. This, plus cranberry supplement twice a day and drinking at least 10 glasses of water a day has changed my life. good luck to all.
By kate, 18-Oct-2013 12:29
I agree DMannose is amazing but I also find a glass of berrocca every morning is great and flax seed capsules too keep your bladder healthy. I used to have around 5/6 attacks a year but haven't had one for at least a year
By Sylvia, 18-Dec-2013 04:35
I'm 53 yrs. happily married for 27 yrs. with 2 sons & have suffered from cystitis a few times a year requiring antibiotics since my honeymoon in 1986. My triggers I've discovered over the past 25 yrs. are stress, coffee, sex, black tea, alcohol, citrus juice [only drink green tea or herbal tea - peppermint & camomile] acidic foods, dry vagina during menopause and drinking less than 10 glasses water a day - My self helps are homemade barley water [cook up half a cup of pearl barley in a large saucepan of water till a soup consistency and drink a small glass full every 30 minutes during an attack this puts a soothing coating inside your bladder], take paracetamol at start of attack & every 4 hours to calm bladder nerve endings. I eliminate acidic foods [esp. tomatoes, citrus] & eat an alkaline diet [cranberry tablets made me super acidic so no good], take a teaspoon of alkalizing barley greens in water morning & night before meals & an acidophilus capsule each morning, since menopause use Ovestin vaginal cream twice a week and Replens vaginal moisturiser before sex & KY jelly. Discovered in recent years the "cystitis bible" written by Angela Kilmartin www.angela.kilmartin.dial.pipex.com who has a world famous cystitis clinic in London - she suffered with cystitis herself for 10 yrs. since her honeymoon in 1966 so everyone please buy her book The Patient's Encyclopaedia of Urinary Tract Infection, Sexual Cystitis and Interstitial Cystitis The international Bible on self-help and prevention from the world's #1 expert Angela gives step by step instructions what to do from the time you have first symptom and has a special chapter on washing the perineum [area between the legs] - washing straight after every bowel motion - this is one thing that has helped me so much I discovered the distance between my anus & vagina is very close so easy to spread bacteria from anus if just use toilet paper. I also stopped wearing jeans, shorts, only wear skirts and loose underwear so no
By Sylvia, 18-Dec-2013 05:16
I'm 53 yrs. happily married for 27 yrs. with 2 sons & have suffered from cystitis a few times a year requiring antibiotics since my honeymoon in 1986. My triggers I've discovered over the past 25 yrs. are stress, coffee, sex, black tea, alcohol, citrus juice [green tea or herbal tea - peppermint & camomile is good] acidic foods, dry vagina during menopause & drinking less than 10 glasses water a day - My self helps are homemade barley water [slowly cook half a cup of pearl barley in a large saucepan of water till a soup & drink during an attack this puts a soothing coating inside your bladder], take paracetamol every 4 hours to calm bladder nerve endings. I eliminate acidic foods [esp. tomatoes, citrus] & eat an alkaline diet [cranberry tablets made me super acidic no good], take teaspoon alkalizing barley greens in water morning & night & acidophilus capsule each morning, since menopause use Ovestin vaginal cream 2x a week & Replens vaginal moisturiser before sex & KY jelly. Discovered in recent years "cystitis bible" by Angela Kilmartin www.angela.kilmartin.dial.pipex.com who has a world famous cystitis clinic in London - she suffered with cystitis herself for 10 yrs. since her honeymoon in 1966 so please read her book The Patient's Encyclopaedia of Urinary Tract Infection, Sexual Cystitis and Interstitial Cystitis The international Bible on self-help and prevention from the world's #1 expert Angela gives step by step instructions what to do from the first symptom, prevention measures & has a section on washing the perineum [area between the legs] - washing straight after every bowel motion - this has helped me so much, I discovered the distance between my anus & vagina is very close so easy to spread bacteria from anus with toilet paper. I also stopped wearing jeans, shorts, only wear skirts & loose underwear so no pressure on perineum. Angela has wisdom & empathy; she is the cystitis sufferers angel, discusses bacteria that causes cystitis, antibiotics, urine s
By Danielle, 23-Feb-2014 06:19
I have suffered from interstitial cystitis for about 2 years now I am 23 and have seen at least four different doctors over the years. Finally after researching for hours on the internet for answer to try and take matters into my own hands I discovered I had IC . My doctor finally confirmed it and that's when my life changed. She prescribed me medications to help the pain and so on, but decided I wanted to help or cure it the natural way. Diet is a key factor for IC and living with it is very painful, so I decided that I had to change my life style in order to feel normal again! It has definitely played a role is my sex life although I try not to think about it. I told my Mom as soon as I found out and she recommended I drink raw organic apple cidar vinager "with the mother" I prefer braggs! I thought to myself that is crazy because it's very acidic and high acidic foods and drinks cause the flare ups. But my mother seems to always be right so I started drinking two tablespoons with water and honey twice a day morning and before dinner and within a week my constant trips to the bathroom at night completely stopped! I also had to stop eating tomatoes, can foods, no msg, no processes foods, no artificial flavors or colors and had to stop drinking tea and coffee. My diet was horrible and now I realized what was causing it. However, I still drink the apple cider and drink 2-3 shots of wheat grass weekly and my IC is practically gone!! I promise these combinations will help you! I went to my doctor for a 2 month checkup to see how I was doing with the IC and the medication and I told her I never started the medication and what I did to cure myself. She is a huge believer in curing things the natural way so she wrote done everything I did. If you continue to stay on a good diet and drink the apple cider and wheat grass I promise you, you will see results!! Hope this will help IC is the worst pain to live with and no one around you will ever understand the pain IC c
By Toni (Mom), 23-Feb-2014 10:03
Thanks for the credit honey! Organic apple cider vinegar is good for so many things...when I drink it I have to hold my breath and take a couple of swallows before I breathe. But it is well worth it!!! Thank goodness it's a small glass.
By Tony, 24-Feb-2014 18:01
Just tink positive do some exercise ,trying to resolve when problems coming to u ,trying to found a real friend can help u with positive minds allways be positive ,u can star zero anytime
By Suzie, 28-Feb-2014 20:42
I different alot from UTI. I've also noticed that tea and bitter chocolate are triggers for it. The second I feel an attack coming on. I mix the juice from half a lemon and 1 teaspoon of baking soda, add water to it once th
By Suzie, 28-Feb-2014 20:53
I also suffer alot from UTI. The second I feel an attack coming on. I mix the juice from half a lemon and 1 teaspoon of baking soda in a glass, than fill the glass with water...you will get relief in about 20 minutes or so. It's very fast. Just to be clear that is baking soda without aluminum, that crap needs to come off the shelf, but that's for a different post... I hope that helps, PS. I do this drink every hour or so until I feel normal again...I also have noticed eating a high alkaline diet definitely keeps UTIs at bay, but I'm not perfect, I loveeee coffee and meat can't get anymore acidic than that...but that has been my observation...I hope this helps someone out there
By Roberta , 02-May-2014 00:13
Hi I have had a bladder problem for 8 years now and been under 4 different specialists. I've had 3 cystoscope in my bladder and they have found nothing. I have to live my life everyday trying to keep my condition under control by drinking water constantly. If I don't have a drink of water for an hour I can feel my bladder start. If I then go to the toilet the amount of pain I get in unbearable. I get this pain every single day. Mostly mornings until I start drinking water and my bladder gets in to the flow of going to the toilet normal. It feels like a raw pain that nothing can help I just have a hot water bottle at all times. I've had scans urodynamics and they have found nothing except that I have a very large bladder capacity of about 800ml when full. Itis a relief to go to the toilet but then the pains starts after. Please has anybody got anything similar or can help me. I am also 15 weeks pregnant but nothing has changed. Thanks for reading. X
By Lin, 08-May-2014 04:54
I have had several bouts of cystitis over the years, but went through a stage where I was regular bouts. A colleague at work gave me advise which helped a lot. If you have taken antibiotics you will get candida/thrush overgrowth. This when eaten with sugar foods causes a reaction (yeast and sugar makes alcohol). You must therefore break the chain. Go to your Doctor and ask for an internal course of medicine to kill of yeast overgrowth. It is a course that lasts a few days. Not only should you take it but it is important that you partner takes it also, if not the whole miserable cycle starts again. Also take Cranberry powder, not juice as it is useless. You can get it online, Natures best website do one. You need to cut out orange juice plus anything else that is highly acidic. Try to limit alcohol but if you must always take cranberry when you come home and gulp down a good couple of large glasses if water before bed. Don't hang on when going to the loo, always go, especially at night. This is not a complete cure but taken together helps a lot. Good luck everyone!
By Angela Kilmartin, 08-May-2014 13:29
The germs which cause cystitis are real, they do not go away with any kind of diet so forget that. My book as mentioned above, 'The Patient's Encyclopaedia of Urinary Tract infection, Sexual Cystitis and Interstitial Cystitis' is frequently called 'the bible' because its packed with information put out in a very patient-friendly way. It is in various translations and also in hard copy or e-book. The booklets are excellent too. And the matching DVD just backs it all up. I am not on the dial pipex e-mail as mentioned above somewhere but you will find me at www.angelakilmartin.com and my e-mail is on that. Get the proper facts and get well, its a simple enough thing to understand and conquer when you have been given the skills. Angela Kilmartin
By Angela Kilmartin, 08-May-2014 13:29
The germs which cause cystitis are real, they do not go away with any kind of diet so forget that. My book as mentioned above, 'The Patient's Encyclopaedia of Urinary Tract infection, Sexual Cystitis and Interstitial Cystitis' is frequently called 'the bible' because its packed with information put out in a very patient-friendly way. It is in various translations and also in hard copy or e-book. The booklets are excellent too. And the matching DVD just backs it all up. I am not on the dial pipex e-mail as mentioned above somewhere but you will find me at www.angelakilmartin.com and my e-mail is on that. Get the proper facts and get well, its a simple enough thing to understand and conquer when you have been given the skills. Angela Kilmartin
By Val , 27-Jun-2014 04:00
Hi I get cystitis so bad mine started up last year and I start to shake all over and I feel sick I go off my food . Doctor was going to get me in hospital ' but after lots of different antibioctics , and about 4 months later she got me better . . But I did get an attact last week and I was soon down the hospital once again ? But feeling ok once again . But now it's really scared me incase I get anther attact ??
By JJ, 28-Aug-2014 17:16
I posted my story last week on how I started to fight UTI without antibiotic.... It has been a tough week in battling without antibiotic. There were days I felt the pain every time I urinated and it was driving me crazy and insane. I cried and prayed and felt angry in the meantime. I touched the bottle of the antibiotic my doctor gave me and wondered if I was crazy not to take it, even just a day or a couple of hours to make me feel better....still I didn't take the antibiotic. I searched on line for any tips I could find for remedy. I have been taken L-Arginine; Cranberry juice and pills; D-Mannose; probiotic for women. and I have been drinking so much water and cranberry juice every day. I am not sure what I did right as I am getting better every day. Finally two days ago there was no pain when I urinated, but I can still feel it is burning there. The best thing is that my energy started to come back since yesterday. Before this I was completely drained, exhausted and had back pain. My doctor was not happy to hear that I didn't take the antibiotic. I understand him as I was wondering if I risked my life too. But I want to have sex as much as I want without suffering and I am going to give a try even this is risky. My doctor asked me to do another test a week later to see if I am clear. I hope that one more week doing what I am doing I will be fine.
By By JJ, 15-Sep-2014 16:52
Guess what? My test results came in last week and I was fine. I beat it without taking the antibiotic. I had sex last night and will see if I am still ok this week.
By English Rose, 06-Oct-2014 15:49
Having had long bouts of severe cystitis for years, when I tried just about everything, had to eventually have an antibiotic but these rob the body of so much. Always ill on them too, so determined to find something else natural to help. It was Cornsilk, so I recommend it. It is natural and is alkaline so you get some relief even after drinking a glass or two. Obtainable from all good health shops and it is cheap. It is infused in boiling water and left overnight, if possible, to drink in the morning, but it also can give some relief even after half an hour or so. Try it. It works.
By winetrigger, 07-Oct-2014 09:36
I'm a 41 yr old male who's 'cured'. I hope my story may help. I used to drink a glass or two of red wine after work with no side effects. Then when I was 29 I started to develop an extreme sensation of having to urinate after sex (classic cystitis, UTI symptoms) even though I did not have to. I immediately thought STD so went and had all of the tests, which all came back negative. The STD Dr asked if I drank red wine, I said 'yes' and he said try and not drink it and see what happens. It worked, I am still fine to drink spirits and beer (some beers do trigger it but I try and stick to Italian and Japanese beers as I have found them the safest). I believe it's the preservative in the wine (and therefore some beers). What's weird is its the combination of wine followed by sex that triggers it for me, within say fifteen minutes of sex I'm feeling the tingle. I doubt antibiotics or cranberry juice would help, but abstinence from wine does (BTW I don't drink tea or coffee so can't comment on those as triggers as others have mentioned). Best of luck finding your trigger. Cheers
By Costs lady, 24-Oct-2014 06:21
It is so reassuring to read that other people are experiencing the same difficulties that I am with recurrent cystitis/bladder infections. It is horrible how isolating this problem can feel. I went through a stage of getting a uti once a month and was constantly on antibiotics for 1-2 years. Thereafter I for whatever reason had a 'break' from cystitis for about 12 months, I have no idea why, I didn't change my diet and admittedly don't take a great deal of precautions to prevent them happening. However this week cystitis has returned and I am really struggling with it physically and psychologically. I don't know why but I feel so depressed when I get cystitis. I have just finished a course of trimethoprim which didn't work and now I've been prescribed nitrofurantoin and really hope that it does the trick. I have been very busy recently and I am feeling quite run down and wonder whether this has somehow contributed to developing cystitis? I am generally fit and healthy, drink plenty of water and do regular exercise. Any idea what could have caused this sudden bout? Thanks all
By Sophie, 01-Dec-2014 18:40
Hi. I'm 19 years old and have been suffering from cystitis/UTIs since I was 16. I've had many trips to the doctor and the hospital including scans, cystoscopes, antibiotics and many other medications to try to prevent recurring infections and symptoms. Nothing has worked. I have periods of time where in which I feel ok and I feel I am finally on the mend for good and then out of nowhere I will have a bout of symptoms. This has made it difficult for me to relax and it has changed my life completely. I feel my triggers, when mixed, determine the level of pain. My triggers are: energy drinks, anything fizzy or sugary, alcohol and sometimes sex (which is also affecting my relationship. Other than drinks and my sex life, I haven't really experimented with which foods but I am going to start to keep a food diary. I also feel that in times of pressure and anxiety (as I am a uni student I feel that deadlines get to me) my symptoms increase and worsen. Also, when I am run down with mouth ulcers and a lack of sleep! Cystitis relief drinks help temporarily but I've completely given up with antibiotics as none of them work and are not good for our bodies. I also taken cranberry and vitamin C supplements 3 times a day which does help. Drinking water is my only saviour. I drink up to 8 bottles a day and can really notice the difference if I am dehydrated. I also feel it affects my social life and my studies as I'm constantly worried as to when the next attack will come about!! It terrifies me. My sysmtoms include sickness and blood in my urine as well as fevers and shivers. I just wish it would go away and I feel for every single one of you!! It feels nice to get this off my chest as I don't know any other sufferers personally, so nobody understands the stress, worry and pain!!! Great website.
By Sophie, 02-Dec-2014 06:31
Hi. I'm 19 years old and have been suffering from cystitis/UTIs since I was 16. I've had many trips to the doctor and the hospital including scans, cystoscopes, antibiotics and many other medications to try to prevent recurring infections and symptoms. Nothing has worked. I have periods of time where in which I feel ok and I feel I am finally on the mend for good and then out of nowhere I will have a bout of symptoms. This has made it difficult for me to relax and it has changed my life completely. I feel my triggers, when mixed, determine the level of pain. My triggers are: energy drinks, anything fizzy or sugary, alcohol and sometimes sex (which is also affecting my relationship. Other than drinks and my sex life, I haven't really experimented with which foods but I am going to start to keep a food diary. I also feel that in times of pressure and anxiety (as I am a uni student I feel that deadlines get to me) my symptoms increase and worsen. Also, when I am run down with mouth ulcers and a lack of sleep! Cystitis relief drinks help temporarily but I've completely given up with antibiotics as none of them work and are not good for our bodies. I also taken cranberry and vitamin C supplements 3 times a day which does help. Drinking water is my only saviour. I drink up to 8 bottles a day and can really notice the difference if I am dehydrated. I also feel it affects my social life and my studies as I'm constantly worried as to when the next attack will come about!! It terrifies me. My sysmtoms include sickness and blood in my urine as well as fevers and shivers. I just wish it would go away and I feel for every single one of you!! It feels nice to get this off my chest as I don't know any other sufferers personally, so nobody understands the stress, worry and pain!!! Great website.
By Sanja, 04-Dec-2014 02:27
Hi Sophie! I see you are fresh on this site, well I've just made registration to share my own experience about Uti. As well as you, my recurrent uti became night mare for me. Around 10 years I have constant uti problems, I drink cranberry tea daily but even with that I got infection. I'm totally crazy and I don't know what to try. Also I drink lemonade and it's some kind diuretic for me and helps in that point. My main culprit is cold wheather. (cold feet),but sometimes it happens when it's warm. I think I don't have food culprits. I drink a lot of water. Also I've heard about marchmallow root and I drink this tea too. It has soothing effect on bladder wall. I can't tell is it helping right now. Did you try D mannose powder/tablets? I didn't but I'm thinking about it. Also, I've read that aminoacid l-arginine is good for bladder, for bladder lining. I think my bladder lining is affected by bacteria and it's much easier to get uti. I was on antibittics and uroantiseptics but this is not long term solution. Also, I've heard turmeric is good too. It has anti-inflammatory properties and it raises camp levels (human antibiotic) and prevent infections. I didn't try. So , ladies, share your succeess stories. Let's help someone who is reading this posts. I'm sure there is a lot of girls suffering out there. Hugs to all uti sufferers!
By Janine, 23-Dec-2014 03:16
I suffered with this problem but I also have been cured of the pain. I spoke to a family member about the bladder pain. They immediately asked me if I drank cola products. I drank diet cola at least 1 can per day. They went on to explain that they had the same problem and their Dr. Told them it was the cola . The family member is completely cured now. I was told it is the color ingredient in the cola. I quit drinking cola and within a week I was completely cured.
By Cheryl, 30-Dec-2014 19:30
In 2009, I started having severe burning when I'd urinate and pain during sex. When I'd urinate it felt like I was urinating out pieces of glass. It would hurt so bad that at times it would make me start crying. I went to a total of 13 doctors from 2009 to 2011 (including two OB/GYN, Urologists, regular MDs, a specialist in diseases etc.) trying to get help and trying to find out what was causing all this painful urination. After 2 years of pain and doctor visits with no success, one of the OB/GYN's that I'd been seeing for this undiagnosed problem asked me if I had ever heard of Interstitial Cystitis? I told her that I'd never heard of it. She said that she really thought that maybe this was my problem, even though I never experienced the pain in my stomach/bladder area. She told me to google IC and read about it and make changes in what I was eating and drinking to see if it helped since nothing they had prescribed had helped at all. I did the research and one of the first things I did was stop drinking diet sodas, cut way down on orange juice and citrus fruits. Within a couple of days I could definitely tell a big difference. I'm not sure if it's the artificial sweetener in the diet drinks, but they were definitely my main issue. I find that I can drink regular soda with little problem. I love orange juice, but find if I drink some with breakfast that I must also drink some water right after it to help dilute the OJ. Tomato based products like spaghetti sauce, pizza sauce etc. also bother me if I have too much of it. My doctor had put me on a medicine called Elmiron, which when I started taking it I was taking 3 a day. I cut down to 2 a day then 1 a day since I was watching my trigger foods and drinks. I finally decided to quit taking Elmiron several months ago and if I really watch what I eat and drink, I rarely have the burning issue. If I find that I'm starting to burn I drink more water and stay away from my triggers. The pain during sex I still experience,
By Pauline Roberts, 10-Jan-2015 12:17
I have been on and off they 10 now with Cystitis and am drinking a lot have some Fruits what can i do to get rid of this for good
By Alexis, 27-Jan-2015 14:32
Help! I have been dating a guy for about 11 months now and would get UTIs from sex quite a bit. We are both 24 btw. But ever since about 2 months ago, every time i have sex i get a UTI! My DR prescribed me Nitrofurantoin with 45 pills to take after intercourse but it gives me a yeast infection every time. It drives me crazy! I recently got a UTI and just lost my mind. I did some research on here and some other sites and got D-Mannose with Cranberry Extract but I also took the antibiotic. This was Sunday. I was taking one D-Mannose a day and felt great! Even had sex with no UTI on Sunday night. Today is Tuesday and I have a HORRIBLE UTI. I am peeing blood for the first time ever and I can't keep calm. I really don't know what to do I made an appt with a DR tomorrow but I really don't have any hope for finding a solution. I'm bringing my boyfriend because I want him to get checked out too. Any help is greatly appreciated. Thanks.
By confused, 11-Mar-2015 05:41
Hi guys I'm a 24 year old female and I have been suffering from utis from the age of 19 and I don't know what to do. Last year I've treated my uti with utin400 and it came back in december. I dnt know if sex is the main cause as I have become sexually active frequently lastyear in july and I think that is the cause.on the 28 of februaruy I had consumed clover orange juice and vodka and the next day I had a urinery tract infection. Its two weeks now that I'm suffering went to a doctor thou he gave me ciprofloxin and nw I'm left with a IC.the burning urine is gone but my bladder is so sore, Even during sexual intercourse I can feel that pain hitting onto my bladder? Any sugestions what should I do?
By Emma, 22-Mar-2015 02:36
Another long time sufferer here. Cystitis is the most awful, depressing thing, especially when doctors don't seem to be able to help. Have any of you checked out the contraception you are using? For years I had the implanon implant in my arm. I would get cystitis *every* time I had sex. I tried everything - diet, supplements, antibiotics, washing/peeing before/after, lubricant, and a thousand other things. Nothing worked. Then I started to notice a correlation with when I had the implanon replaced. New implant = the worst trouble. It would be terrible for the first year, bad for the second, not so bad for the third, sometimes I'd be a couple of months cystitis free before it needed replacing. Then new implant and it would begin over again. The doctors didn't think it could be that, but I changed to the Mirena IUS anyway, and overnight it stopped. Now I get a bout every few years like many women, but I'm no longer in fear of my sex life! Whatever contraception you are using, or not, it may be worth changing to see if it makes a difference....
By Sarah, 31-Mar-2015 02:16
Hi Girls, currently on my 4th UTI since Christmas, had them on and off for years (mainly post sex) but never this frequently and this intense, never used to have blood visible in my urine, but last 4 times I have. I've been taking D-Mannose since my last attack, abstained from alcohol and had no problems, until I had beer and didn't drink enough water over the following 48 hours. I think now beer is my trigger and not drinking enough water post flare up. Doctor has referred me for an ultrasound on my bladder as they suspect diverticula of the bladder that can be easily treated by minor surgery and results are supposed to be good. I actually hope they find something so they can fix it! Also having vaginal swabs to see if the coil I have is harbouring any nasties that are transferring to my bladder. I never really drink tea so I don't believe thats a trigger for me, but I am cutting back on coffee and avoiding beer like the plague. Ask your doctors for an ultrasound, swabs and culture to rule out any other sources of infection, good luck and i feel your pain x
By Sarah, 31-Mar-2015 02:47
Also, make sure you go to the loo STRAIGHT after sex and ensure you empty your whole bladder, it wasn't until I truly concentrated on emptying my whole bladder that I realised how much pee I wasn't expelling, I sit up straight and strain as much as possible and then lean in all directions then relax and pee again, this helps a lot when preventing post sex UTI's, also using fem wipes or moist toilet wipes help rather than toilet paper. I also make sure that my partner washes his bits first before bed regardless of intention for sex or not as to make sure there are no germs lurking and causing issues later!
By Pam Fraser, 01-Jun-2015 13:15
Hi, I've been suffering from age 10. Mostly just pain and frequency without infection and always gets worse around period. I started taking calcium citrate tablets and making sure I drank plenty of water and it's really helped. It helps keep the urine from being too acidic which was then triggering a flare up
By Ann 02/06/15, 01-Jun-2015 16:16
I'm so confused. Cranberry is Acidic, but helps keeps UTI at bay?? Diets that are Alkalising helps??? Lemon juice helps keep body Alkaline?? Apple Cider Vinegar helps keeps body Alkaline?? I'm told the Urine needs to be Acidic to keep UTI at bay?? Help!!!!!!
By Ann 02/06/15, 01-Jun-2015 16:18
I'm so confused. Cranberry is Acidic, but helps keeps UTI at bay?? Diets that are Alkalising helps??? Lemon juice helps keep body Alkaline?? Apple Cider Vinegar helps keeps body Alkaline?? I'm told the Urine needs to be Acidic to keep UTI at bay?? Help!!!!!!
By Babs., 17-Jun-2015 14:29
After being put on Elmiron for my Interstitial Cystitis, I found there was a significant decrease in the frequency but the side effects of hair loss etc. was not something I wanted to live with. I found some information on Desert Harvest Aloe Vera Capsules especially for people with I.C. I have to get it from America and I take 3 capsules morning and night. I have been taking them for just over 3 months and it not only stops the frequency but also the burning urethra that I have always had even when taking Elmiron. I use a Tens. Machine for the pain when it gets really bad. I have pain every day and suffer very badly whenever I travel in a car or plane. I take an antihistamine before I travel and that seems to help a lot. The pain of I.C. is unbelievable!
By Tanya, 04-Aug-2015 03:19
I have suffered from on and off cystitis attacks for years. Just want to let you all know that since I have been taking Urell the last few months my syptoms have been relieved a lot. It is a cranberry supplement from France. Other cranberry supplements didnt work for me but it has been medically approved in France for maintaining a healthy urinary systom. Its made life a lot easier for me so please do look into this if you suffer from burning of urethra and frequent utis!!
By Imelda, 07-Aug-2015 10:01
I think that medical research to find a vaccine for cystitis or the e coli bug should be a priority as it is such a horrible condition and millions of women suffer. please can someone speak up for us.medical research in other areas are going so fast nowadays so please please help find a cure for us. thank you
By Emz, 15-Aug-2015 14:07
Feel all of your pain, had cystitis for a few years, this last year had not been two bad since taking cranberry capsules, and d-mannose powder is the best, take 2 cranberry capsules in morning, and two at bed time, also have hot water and lemon every morning too. I drink nothing much but water, I need quite a lot of water in a day or sometime I do feel the twinge on the odd occasion start. It's a nightmare and does get you down, sever seas cranberry capsules I have found the best, hope this helps !!!!
By Chloe , 28-Aug-2015 14:14
Hello, I am in absolutle agony with cystitis! I am only 16 and have had it for years, I wake up EVERY morning without fail with it. Its making me depressed! I don't have any energy, I'm starting college next week and doing uniformed public services which includes a lot of exercise, I'm so scared that it is going to affect that. I have been to the doctors 9 times now and they have given me antibiotics twice, cream twice and other times they have just told me to take the sachets. They all work while I'm using/taking them but as soon as I finish the course it is back again. I do drink tea 2/3 times a day, do you recon it could be that? That is the only think I drink/eat daily. Please help.
By Chloe , 28-Aug-2015 14:45
Hello, I am in absolutle agony with cystitis! I am only 16 and have had it for years, I wake up EVERY morning without fail with it. Its making me depressed! I don't have any energy, I'm starting college next week and doing uniformed public services which includes a lot of exercise, I'm so scared that it is going to affect that. I have been to the doctors 9 times now and they have given me antibiotics twice, cream twice and other times they have just told me to take the sachets. They all work while I'm using/taking them but as soon as I finish the course it is back again. I do drink tea 2/3 times a day, do you recon it could be that? That is the only think I drink/eat daily. Please help.
By Loretta, 22-Sep-2015 14:24
Hi everyone. I have had Interstitial Cystitis for several years now. What helps me most of all is a product called Prelief. I take 2 at the start of each meal and you can also take some before a snack. I also take 2 cranberry tabs per day.
By Rene, 15-Oct-2015 15:38
When I have an IC attack (I call it attack because it sneaks up and attacks me out of nowhere, I feel very down to the point of tears. I just want to curl up in a ball somewhere. But I can't. I have a full time job. I cut out dairy and that was a miraculous cure for me. But last weekend I had a piece of key lime pie. I am sure it had dairy, because I have been so sick ever since. After 4 days, I went to the doctor thinking it was a uti, but she said no bacteria was present. So now I will try cutting out gluten and sugar and mayo. Boohoohoohoo. My staples, lol.
By you skin looks amazing! ive never heard of the oil, 17-Oct-2015 14:38
you skin looks amazing! ive never heard of the oil trtaement but im going to try that tomrrow night! im excited to feel the little pebbles you described from black heads,? black heads and just little bumps all over are my biggest issue nothing gets rid of them :/ just bought grease lightening today, went to see reviews and came across yours it also seems like you lost a lot weight! when i used to work out my skin was pretty much completely clear, i think that makes a HUGE difference, thank u!!
By idk if this is just me, but the grease lnnthiigg w, 19-Oct-2015 18:23
idk if this is just me, but the grease lnnthiigg was TERRIBLE for my skin. my skin had actually stopped breaking out? when i got it, but as soon as i used it the next day, i started breaking out. i was also in like a different climate and stuff when i started using it, because i dont have a lush shop near me and while i was on vacation i found one, but its caused me to breakout so much.
By Trying to be strong..., 08-Nov-2015 20:26
I suffer from chronic interstitial cystitis every day. I take prelief which helps take the acid out of the foods we eat. This has ruined my life, I'm depressed, flu like symptoms and the pain/burning is excruciating. I've been in a 12 week flare even with getting bladder instillations once a week, my urologist was on vacation so I went to my primary care physician, he sent me to the ER because the pain is so bad. I drink a gallon of water a day, but was told I was dehydrated, how is this possible I said to myself. The ER hooked me up to a bag of fluids via IV and the burning and pain went away within 2 hrs. Ive been fine for 3 days. So I wonder are these really flares or are us IC sufferers just dehydrated because we can't eat like normal people. Praying for all of you suffering. No one will understand the pain unless they experience it themselves, I would never wish this on anyone.
By Miki, 03-Dec-2015 16:58
Hi guys. I have suffered from chronic cystitis for 6 months which started with a bad UTI that cleared up with one course of trimethoprin and has left residual inflammation. The pain is daily and worse when I haven't drank tonnes of water. I usually wake up with a burning urethra and a tender feeling in the bladder. It's giving me enormous grief and baffles me that there is so little medical knowledge on this awful, debilitating disease. I want to recommend to you all the following regime which since starting has cleared my symptoms up enormously: 3 x calcium + magnesium tablets a day (after meals); 3 x potassium citrate doses (2 tsp diluted in water) a day. Please do try this.... though I do still suffer sometimes it is nowhere near as frequently and the relief has been amazing. Good luck to you all!
By SHARON BAKER, 14-Dec-2015 12:06
I SUFFER FROM INTERSTITIAL CYSTITIS FOR 12 YEAR NOW THIS NOV,2015 HAS BEEN THE WORSE I HAVE EVER WENT THRU, I TOTAL CHANGE MY DIET,I TAKE PRELIEVE AND THEY SEEM TO WORK,I AM TRIED OF WATER, I HAVE TRIED A ORGANIC JUICE CALLED BLACK MULBERRY, IT IS REALLY GOOD, AND VERY LIGHT I CAN DRINK THAT ALL DAY, I WISH THIS ON NO ONE, THE BURNING, THE STABBING PAIN, THE BEING TIRED ALL THE TIME, AND GOT TO WATCH EVERYTHING YOU EAT, I PRAY FOR ALL OUR HEALING IN DEALING WITH THIS MONSTER.
By T, 21-Dec-2015 08:17
Miki, you are describing exactly what has happened to me. I had a UTI, was given trimethoprin but the symptoms never really went away and for three months now I have been suffering. I have just today been prescribed Nitrofurantoin but I have a feeling it isn't working. It has been getting steadily worse, as in the past month I have started to get painful spasms and an awful, crippling pain in the middle of my abdomen which is worse when I go to the loo. It's runing my life. I haven't had sex in a month and have no idea how much longer this is going to go on for.Reading about it, and seeing how people have it for their whole lives is so scary. I've ordered D-Mannose and have started to take cranberry capsules, I'm drinking loads of water, I've cut out sex, caffeine and alcohol. I feel miserable, like I'm about to cry all the time. My social life is in tatters. Why are there no answers?? I feel like because this is a condition which affects mostly women, there has not been enough research into it. If men suffered the same way, I bet there would be a cure by now. This is absolutely debilitating.
By Shedeb, 05-Jan-2016 20:54
I am a 58 year old married woman who started have UTI's when I was 16. Sex is the trigger for me. It has gotten worse with menopause. I got tired of the antibiotics and have gone to cranberry capsules and it works well for me. I take one every hour or two with water for at least 5 days and it knocks it out with very little pain. No one has mentioned Decaf coffee. It is processed with some VERY bad chemicals and will almost instantly light my bladder on fire. My sister had the same problem with burning and lack of control and when she cut out the decaf, the problem went away. Some of you suffer so much it makes my heart ache! Don't give up till you find your answers.
By Tracey Moore, 21-Jan-2016 12:10
I have discovered after years of pain if i go down on my man and then have sex i always get cystitus. Now i know that i my saliva is the cause
By Sunny, 29-Feb-2016 02:17
Hi same. I have it as we speak have had it for the past three weeks. Im ready to kill myself its that bad. I wish it would go away im a huge tea lover.milky tea can that have an effect on it. Help. X i cant do anything.
By Kathryn , 08-May-2016 11:53
Just in bed at 8pm, can hear everyone having a bbq... Want to live a normal life again. I've suffered from cystitis ( or whatever!) for 12 months now. All the doctors want to do is give antibiotics! Fed up totally ??
By Marilyn , 14-May-2016 02:55
It could be interstitial cystitis in your bladder wall, because that's Wat I got after years of thinking is was cystitis. It drives me mad, but I m getting treatment now. Worth looking into. Good luck
By Marilyn , 14-May-2016 02:55
It could be interstitial cystitis in your bladder wall, because that's Wat I got after years of thinking is was cystitis. It drives me mad, but I m getting treatment now. Worth looking into. Good luck
By Marilyn lawrence , 14-May-2016 02:56
It could be interstitial cystitis in your bladder wall, because that's Wat I got after years of thinking is was cystitis. It drives me mad, but I m getting treatment now. Worth looking into. Good luck
By Julie, 14-May-2016 12:36
My main trigger for an attack seems to be soya. 'Cup a soup' is another thing to avoid and fruit juices made from concentrates. Once I know I'm starting another bout, I immediately take lots of water with lemon juice and follow up with a vitamin C tablet. It usually alleviates the symptoms within half an hour or so and after about three hours I'm okay. I keep slices of lemon in the freezer just in case! I know it's hard to be away from the loo for more than ten minutes but exercise also helps even if it's walking up and down stairs. I hope this may help another sufferer.
By Hari thandi, 18-Jun-2016 02:35
Hi Emy sorry to know that you have been suffering from cystitis for so long. you must have read patiens stories and replies from helpers. Some of the comments are quite useful. If you still have the problem I advise to take 5 minutes cold shower on your bladder. I believe this wii work. good luck!
By Kristal, 06-Jul-2016 09:35
Found a Cure! I had all same symptoms and attacks everyone here is describing. I've tried everything listed and not much changed. Last summer I started taking magnesium to have more regular bowel movements and at the same time drank about 3 glasses a day of baking soda and lime for a couple of months. Very thankfully for the first time in 10 years I got my old body back. No more flares and I can actually drink alcohol and caffeine with no affects, but if I do it in moderation so I do not end up in the same boat. I also continue to drink the baking soda and lime over ice after any acidic type of foods I might indulge in. This has worked/healed me and I have not had symptoms for 2 years now. I think the baking soda helps keep your system alkaline enough to finally let your bladder heal. Use aluminium free baking soda. If you mix just enough lime and baking soda you will get a bit of a fizzy drink which as you begin to notice the relief you get from it you will start to crave them. Happy Healing! I know your pain!
By Spiegel, 23-Jul-2016 15:10
I'm not sure which cured me but I avoided all caffeine, took Nystatin a prescription liquid that kills yeast because I was told that it was a yeast infection in the bladder. Along with that I drank daily marshmallow root tea and MSM pills that I bought on Amazon and became normal again. I think it's an overgrowth of yeast in your digestive tract that moves into your bladder.
By Spiegel , 23-Jul-2016 15:12
This condition is called interstitial cystitis and although they say their is no cure, nystatin liquid, MSM and marshmallow root tea helped me.
By Spiegel, 23-Jul-2016 15:21
Never ever hold your pee it stretches your bladder into micro tears everywhere and they can't heal quickly because they have acid like pee on those tears. You need to shrink your bladder and keep the pee clear to heal the wounds. Slippery elm tea and marshmallow root tea is soothing to your bladder. Avoid all caffeine, acid foods, spicy food, and chocolate and alcohol if you want to heal. It takes time but you won't heal if you don't fix the underlying problem that probably started with too much carbs and sugar in your diet and then holding your pee causing tears and yeast digs right into your bladder deep. Starve out the yeast, take an anti fungal diet or prescription anti fungal liquid called nystatin and heal your bladder.
By Zena, 28-Jul-2016 13:36
Ladies, I've had interstitial cystitis for 5 years I'm 25 now. I am not fully cured yet but have improved at least 60 percent the past year and would like to share my discoveries. Mine started out with chronic utis the past 5 years, I am against antibiotics so I never would take all of them when I got an infection so I believe that's why I formed inflammation through continuous bacterial infections. I finally got a hold on the UTI with D mannose supplements, Raw apple cider Vinegar, and calcium. It's been about a year since I've had infection, and about 2 years when the interstitial cystitis formed. On top of that have had yeast/candida problem I've tried sooooooo so many things good Lord. I will list things that help and things that didn't help. Things that help now: Combination of- Querecetin with bromalain(anti-inflammatory) Glucosamine(helps rebuild GAG layer in bladder, given to cats for cystitis) Protein powder Probotics MSM Turmeric capsules(anti-inflammatory) Calcium(eases pain, keeps phone level and more based, bacteria thrives in acidic conditions) Healthy diet with cooling foods (no citrus an spices with exception of cayenne pepper, has numbing and anti-inflammatory properties) No sugar or processed foods Vitamin D/ the sun/ sweating Raw milk Progesterone and estrogen cream : I found out I have low levels in the menopausal stage. I recommend yal getting your levels checked for this has improved my condition and sex life immensely! Per before and after sex Stretched the pelvic area and inner thighs along with massage Squats strengthen pelvic floor and help bladder muscles Drink lots of water Things I've tried that do not help or irritate bladder: Alcohol and coffee ( I do take a shot of black coffee with calcium when feeling down helps perk me up, I believe we need all the feel good we can get, but some people might not be able to handle it) Citrus, definitely no tomatoes/pizza for me Spices that aren't cayenne ( don't rea
By Zena, 28-Jul-2016 14:01
My message got cut off. Spiegel, I am interested in knowing more about Nystatin, my Dr gave me diflucan tablets that seemed to help with bladder and yeast but I wanna try something different. * a naturopathic told me most her patient's with IC had bladder warms and to do a parasite cleanse. Many other uses including Dr OZ have confirmed that 98 percent of Americans have parasites. Humans have had then since beginning of time. Just another option to look at. On the cleanse now
By Zena, 29-Jul-2016 08:03
My message got cut off. Spiegel, I am interested in knowing more about Nystatin, my Dr gave me diflucan tablets that seemed to help with bladder and yeast but I wanna try something different. * a naturopathic told me most her patient's with IC had bladder warms and to do a parasite cleanse. Many other uses including Dr OZ have confirmed that 98 percent of Americans have parasites. Humans have had then since beginning of time. Just another option to look at. On the cleanse now
By Anna T, 17-Aug-2016 06:11
IC, urethral syndrome, painful bladder is all usually actually caused by bacteria. This is an emerging field of medicine - get a referral to Professor Malone Lee at the Whittington Hospital in London or to UCHL urgo-gynae (not urology). There is hope
By Helen, 21-Aug-2016 20:02
I recently diagnosed myself with IC after having a serious of UTI attacks by he antibiotics were not working anymore so I knew it wasn't UTI anymore. Plus 3 urine tests were negative for ecoli. I haven't yet been to a urologist to see whether I have a cyst or allergy yet. But I wanted to share a really good remedy for the pain. When I have an outburst I get an ice pack from the freezer and lye it on directly on my uretha. I keep it there until it numbs the area. It's a real relief from the agitation and pain. I also find that bicarbonate sachets help a lot. I do believe tho that a lot of the triggers are diet related as lot of people have mentioned in this thread. It's worth looking at cutting out certain food and drinks especially during an attack. Pretty sure mine has to do with coffee and tea. I don't eat breakfast in the mornings but I have 1 tea and then a coffee. Could be the culprit. So I'm going to cut it out and see how it goes. Will report back in a few weeks. :) I really feel for those of you who have this constantly. My heart goes out to you. Please try the ice !
By Helen, 21-Aug-2016 20:05
Ps. I know heat bass and hot baths have been mentioned here too but for me heat just agitated the inflammation. Ice may work better for some of you.
By Tracy, 01-Sep-2016 12:51
I always got really bad uti after sex but now take just 1 antibiotic either nitrofurantoin or cefalexin before or up to an hour after intercourse and this seems to work well for me.
By Pam, 05-Sep-2016 14:34
I have recently been diagnosed with IC. I hate it. I have been researching the different things I eat and the pain. Number one stress is a big contributing factor...our house burnt 2 years ago, that was bad enough but caused a tremendous amount of stress on our marriage... I have high cholesterol so I've been eating a lot of oatmeal with local honey...I found out that oats is a big problem for IC. I keep finding out different things as I go through this journey! I hope one day
By Pam, 05-Sep-2016 14:43
I hope one day a cure is found!!! What helps me the most is prescription medication Uribel generic Ustell and sometimes pain pill and/or muscle relaxer to relax.
By Jeannie, 13-Sep-2016 01:12
Hi all. I have just read all the above posts. Came across this site by accident while doing research for yet another uti. I'm into my second one this month and the pain is overwhelming. I don't need to explain the symptoms as it appears everyone has the same to a lesser or greater extent. My GP is good. He's sending me off for a bladder scan but only gives antibiotics and no advice. I've taken note of all the acidic foods to avoid. I'm eating and drinking them all and due to the time of year eating loads. I drink loads of cola, tea, soy milk, vodka, cider. I love spicy foods, tomatoes by the ton and mushrooms. These are all my favourites. I'm going to stop eating and drinking these and see what happens and re introduce slowly and see what my body can tolerate. Holland & Barratt will be having a visit as soon as I can spend time away from the toilet. Got through a loo roll since 6 this morning. I will keep information up to date and tell you how I get on. God I'm going to miss the vodka!!!!!!
By Kindhart1, 22-Sep-2016 16:35
Great article . Right on spot . It's tea intolerance . Even if it's few sips.
By Kindhart1, 22-Sep-2016 17:47
Spices any any any sort of caffeine and sour things , and absence of water will cause it to people who it ...please stop ! Best wishes ????
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This recovery story is in categories: Acne, Cystitis, Depression