I've got cystitis AGAIN :(

I have recurrent cystitis, been struck down again today. I just cant cope with it Anyone else suffer from it? Its never mild, I'm always in agony and pee blood. Still not been referred to a urologist though
Just needed to say something because I'm home alone dealing with it.

Get hold of a copy of Angela Kilmartin's bible on cystitis - my friend had the same problem and following the advice in it stopped it completely.

In the meantime, get yourself some potassium citrate mixture, and drink loads of water and of course cranberry juice which helps prevent the bacteria sticking to wall of the kidneys.

Hope you feel better soon!

I`ve just had it myself for the first time in 20 years! My doc was pretty good, he found some blood given antibiotics starting to feel better.

Hope your doc can get you sorted soon. The previous time I took the water and cranberry juice advice. Trouble is, the infection went up instead of out. Ended up in hospital on a drip for nearly two weeks

Bicarb of soda in a pint of water helped me when I had it

Get yourself to the gp, you need antibiotics. I've only had it once, I was 19 and had no clue what it was and suffered for a week, by the time I went to the docs I was quite poorly indeed and was peeing blood.

There is a condition called interstitial (?sp) cystitis which is a chronic condition. Maybe google that and see if that sounds like what you are suffering with. If so tell your gp and get them to refer you to a urologist. Sometimes gps need a bit of pushing from the patient to get them to refer you.

I used to suffer terribly with cystitis so I know exactly what you're going through. *HUGS* I highly recommend the book mentioned above. I took the following steps and I haven't had an attack for years now.

1. As soon as I had blood in my pee I would go straight to the the doc and he'd give me antibiotics. Do you go to the doc? If not, make sure you do. My ex-hubby was in the RAF at the time and I'd turn up at the Med Centre at all hours of the day and night. I think they referred me to the urologist in the end to get rid of me! Anyway, dont put up with it, go and get some antibiotics asap.

2. Get that cranberry juice down you. I found that was the one thing that really helped, in conjunction with the antibiotics.

3. Do you wear tights? I took the advice in the book and started wearing tights with an open gusset. The ones I wore were made by Pretty Polly and were called Pretty Cool.

4. I don't know what your personal situation is, but if you're in a relationship, always pee straight after sex. Sorry if that's a bit TMI, but it's really important!

Hope this helps and that you feel better soon. Get to the doc!!!

Love, Trace xxx

I used to suffer badly when I was a child as I had a phobia of public toilets being unclean so I used to not drink anything at school and hold onto my pee until I got home. I'm still like that so I carry antibacterial wipes in my handbag if I'm out n about. Try to drink diluted cranberry juice with a some bicarbonate of soda and that should help clear things up and there is a particular anti-biotic which helps kill cystitis that your GP can prescribe to you. If it's recurring then you definitely need to see a urologist to make sure there's nothing more serious to worry about. Hope you feel better soon. Xx

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Thanks ladies, because I'm a recurrent sufferer I have antiobiotics to hand. Normally after taking the first tablet I feel better within 2hrs, today its taken 9 1/2hrs for all the pain to go I'm just feeling relieved at the moment. i'm going to get the book that was mentioned
I already take loads of precautions, pee and wash straight after sex, dont have sex more than twice a week, drink lots, got to the toilet often. You name it, I do it

I also seem to be triggered by stress, so not much I can do about that...

I feel your pain. I suffer with this too. Went to a specialist and they said there is nothing they can do. I found that hot lemon helps me. The stuff you put on pancakes - added to hot water. Norm takes some of the pain away. Also be careful what shower gel and bubble bath you use! x

sheepy19 said:

Thanks ladies, because I'm a recurrent sufferer I have antiobiotics to hand. Normally after taking the first tablet I feel better within 2hrs, today its taken 9 1/2hrs for all the pain to go I'm just feeling relieved at the moment. i'm going to get the book that was mentioned
I already take loads of precautions, pee and wash straight after sex, dont have sex more than twice a week, drink lots, got to the toilet often. You name it, I do it

I also seem to be triggered by stress, so not much I can do about that...

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This sounds exactly like me! And all the Dr's ever gave me was same old advice over & over. Mine always head to my kidneys if I leave it and I used to get very irritated with friends who would have honeymoon cystitis and tell me to drink cranberry and it would go - if it's a proper bacterial uti it's not going anywhere without antibiotics!

I suffered with my last one in Feb - I was off work a month with it, was horrendous. I saw a urologist about 18 months ago and he said I have a short unitary tract so that's why it gets infected so often, the bacteria don't have to travel far to get settled! I also have badly scarred kidneys from the times it's gone to my kidneys.

Sorry - I'm wittering but just wanted you to know I really know what you're going through. In February they gave me the usual antibiotics, they didn't help the symptoms but my urine was coming back as clear from infection, they gave me more and they still did nothing. I was hallucinating etc and getting very ill. Then a locum Dr suggested that they test for a rare bacteria sometimes found in faeces - he suggested that during sex the bacteria could be on my skin (not in a dirty way, just that they cling everywhere! Lol) and get knocked in the direction of my urinary tract. Anyway, my urine was full of it - they gave me some antibiotics and a week later I was better! Had probably been there months! He recommended I take cranberry capsules and vit c capsules to stop bacteria from forming, zinc to up my immune system and probiotic capsules to counteract all the antibiotics - he said capsules are best as the idea is to get a higher dose of stuff like cranberry and Vit c than the body needs so it gets rid if it in the urine.

Anyway, I haven't had one since Feb and as someone who has been struck down about once a month for 4 years it's amazing!! That lovely dr also told me that they can be caused by stress even though everyone else I've ever seen has said they can't. So push your dr to check your urine for everything when they send it off and get some vitamin capsules. I'm not sure which ones helped but something has!

On a final note - you mention you pee and wash after sex. Washing isn't a good idea as you're just kind of spreading the bacteria around - peeing alone should push any bacteria out of the urinary tract and thats all you need to do, then obv wipe front to back to make sure you dont spread any the wrong way!

Sorry for writing so much, hope it helps x x

I feel your pain:cry:

I had this problem for two years consistantly and it was hell. The only thing that got rid of the pain was diamorphine, it really does hurt that badly doesn't it?

Ok, a couple of things from me:

1) My urologist said to never drink cranberry juice in the active phase of cytitis.. warm lemon barley water. Cranberry prevents bacteria sticking but its so acidic it makes it worse when youre in the inflammation stage.

2) double dose your first anti biotics to get things going. Dont take two loads at once but take them closer together with a good anti inflammatory. Nurofen are the best even though other brands are cheaper.

3)Try changing your anti biotics. Trimethoprin never worked for me, I used to have straight forward amoxicillin, like you I kept it at home and self prescribed when it started.

4) Have a 2 litre bottle of warm water with you when you wee. Pour it over your nether reaches as your weeing, it really helps for some reason!

5) The sex thing... use a really good lubricant and just don't be too vigorous! TMI!

6) DEMAND (!) to be referred to a urologist. I had a cystoscopy (camera in the bladder) where they fill your bladder up with freezing cold water to have a look around. I have not had cystis since. I have no idea why but maybe the bacteria lurk in folds in your bladder and this gives it a good clean, who knows!

7) Try and keep hydrated, never drink coke and cut down on coffee... I had urology problems as a little girl and I remember... no tights, cotton knickers, no bubble bath etc...

8) there are certain foods you can avoid, google it, Im not sure what they are..

and lastly (phew!)

9) Exercise? Do you run or do anything that jogs your bladder up and down? That can make things worse...

I feel so sorry for you.... My life was miserable when I had it and I spent the whole time in fear waiting for the tell tale twinges that start it off..

Good luck, hope this helps!

Jules
xxx

7)

An old lady I use to care for had recurrent cystitis, just to try something the doctor hadn't she got herself some KY and wore it daily, and the symptoms stopped! Make sure you wear a panty liner though.

When so painful, it helps to pee in water, if you can bring yourself to pee in the shower or pout water over yourself as you pee.

I also head mine off with bicarb and warm water every hour when symptoms start.

Well this morning it came back!!! I got in a terrible state, my mum managed to get me an emergency appointment thankfully! So I'm now on a totally new antibiotic and its pretty much gone! feeling quite a lot better

@indibabe- you're right, people have no idea what its like to have proper cystitis thats bacterial. No amount of cranberry is going to do it! I can see that you've really suffered too, its just awful! No-one should really have to suffer in this day and age. I've read about research they're doing on creating a "vaccine". I'll be first in line to try it!I'm going to push to see a urologist because this has been happening since I was 2 I REALLY need to be checked out.
With regards to teh washing after sex, I have done ALOT of research and it all says its imperative to wash after sex as it washes away the bacteria and also helps reduce any swelling.

Thanks everyone, I wouldnt wish the suffering on anyone, but its nice to know I'm not alone

I'm so sorry it's back - definitely push to see a urologist, for me even though all they could say was that my urinary tract was short it at least gave me a reason, I was so fed up of people telling me I don't drink enough etc when I drink at least 3 litres a day!! I hope the latest antibiotic does something - keep pushing them to thoroughly test your urine and make sure they're treating the right bug!

The washing after sex is an interesting one - the reason I said don't is because I've read so much contrasting evidence on that. I used to and then ended up with bacterial vaginitis ( if you've never had it look it up, it is honestly the most embarrassing thing I've ever had) and it turned out that it was because when I was washing after sex I was washing away all the good bacteria - it didn't stop my uti's and it caused bv! But I would definitely say if it works for you then keep doing it, but it didn't me.

Please keep in touch and let me know how you get on - don't suffer alone. I still wake up most mornings convinced I can feel one coming on, it's only when I for for a wee and it's normal I can relax, so I totally know what you're going through.

Good luck x x