How I beat ten years of severe cystitis

By Gaynor rated 9.1 out of 10, viewed 3209 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.
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This recovery story is in categories: Acne, Cystitis, Depression