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Original poster

Recurrent cystitis :(

16 replies

smorticus · 20/08/2013 11:35

Hoping someone can give me some advice.
I have had 8 bouts of cystitis each lasting between 2-7 days since June. The sachets you can buy only take the edge off the pain but don't get rid of it completely. 2 out of the 7 times i have passed large amounts of blood and (tmi) clots in my urine. HmmNothing seems to set it off, it comes at random times with no set pattern (not after sex, medication etc)
Have been to my GP about it but he just prescribes penicillin and isn't helping me find out what is causing it or how to stop it. I feel crap it is affecting everything. Have had to take days of work, my mood is not a good one and today's bout woke me up at 3am :-(
Please help me. Even if its just advice on how to get the doc to help me.

OP posts:
KurriKurri · 20/08/2013 12:08

Hi smorticus - how miserable for you Sad

I wondered what tests the GP had done for you, - I only ask because a friend of mine had recurrent cystitis and in the end she was DX with diabetes, (not wanting to worry you, unlikely that you have that, but obviously it is something GP should have checked for)

Does he always give you the same anti biotic? - it might be that if you have an infection it is not responding to that particular AB and you need to try something different.

If you are not happy I would ask for a referral to a urologist, so you can get the problem sorted properly. If you feel very unwell, and GP isn't helping then I would go to a and e, and they will test you properly and refer you to a specialist.

Morien · 20/08/2013 12:20

Poor you!

I second KurriKurri's suggestion that might need a different antibiotic to treat your particular infection. That's what happened to me, and once tests had established what the cause was and I was prescribed the right antibiotic, I was fine. Haven't had a bout for months now (touch wood!)

purplewithred · 20/08/2013 12:29

Go back to a different GP if you can and take a nice warm sample with you for testing. Which antibiotics have you been given? UTIs can be triggered by loads of different things, mechanical as well as medical. Menopause triggered my cystitis - rejigging my HRT sorted it out. You may also need to keep antibiotics on hand for future recurrence or even to go on preventative antibiotics for a while.

Original poster
smorticus · 20/08/2013 12:41

Thanks for your replies. He has only ever sent Urine samples of to test for blood, protein and bacteria all of which always come back positive and he only prescribes me penicillin VX 250mg.
I will try and see a different doc and ask about seeing a urologist as this clearly isn't normal and is making me so unwell. I drink plenty don't wear tight clothing etc do everything right on paper as it were but still seem to suffer with it something chronic. I have to go to work in an hour and just about managing to stay off the loo long enough to get myself ready! Will phone docs again tomorrow as is my day off and refuse to be fobbed off lol x

OP posts:
Montybojangles · 20/08/2013 12:59

If he has sent off a urine sample it will have been tested for what the specific bacteria was, and which antibiotics it was sensitive to, meaning that the antibiotics prescribed should have been the correct ones. He may be giving you an insufficient course or dose though. As kurrikurri suggested, maybe you should ask for him to check your blood glucose to rule out diabetes.
See another gp, as this shouldn't be an ongoing problem.

HeirToTheIronThrone · 20/08/2013 13:07

I have had EXACTLY the same thing since early July - like you, not set off by anything in particular. Two courses of antibiotics now seem to have worked though - how long were you on them, as my second lot were meant to be for 5 days but the pharmacist messed up and gave me 10 days worth, and I ended up taking them all as after 5 it was still there - so maybe you need a longer course? My GP also recommended lots of lemon barley which seemed to help, and gallons of water every day to prevent it coming back. I did also wonder if it's because of the hot weather as it seems to have tied in - ie warmer and sweatier down there (lovely!) than usual.

Original poster
smorticus · 20/08/2013 13:18

Blood sugars might be an idea as been feeling dizzy and faint a lot more than normal of late.
Sorry to hear you have been going through the same Heir. It is flipping crap isn't it!!! I've been given 2 weeks worth of antibiotics each time and they have usually got rid of all symptoms by day 6/7
I never thought about the weather being a possibility but you are right there have been some very hot and sweaty days! Not sure if its always started on days like that though x

OP posts:
mawbroon · 20/08/2013 13:28

I had recurring cystitis years ago. I read a book called Understanding Cystitis by Angela Kilmartin her website is here, I had this problem before the days of the internet LOL!

I don't remember much about it except I managed to get rid of it once and for all.

It's really unpleasant, I hope you are well soon

HeathRobinson · 20/08/2013 13:48

I'm struggling with this too. Just finished my third lot of (different) antibiotics, and it's still there in the background.

Couldn't get a GP appt today, need to try again tomorrow. Oh, the joys of ringing at 8.30 am and not getting through for half an hour, only to be told that all the appointments have gone!

More positively, my GP recommended ginger ale as well as lemon barley water. It does seem to help me.

DrinaDancesInParis · 20/08/2013 17:54

Oh sorry you are suffering. Cystitis is so shit.

I suspect instead of getting re-infected you are dealing with the same original infection which is re-surfacing. If you want antibiotics, like PPs say you need to get your GP to have your urine analysed/cultured to isolate the actual bug (e coli are the most common) so you can get the right ones.

My advice is to give Waterfall D Mannose a try. I have recommended it so many times on here people will think I'm an advertiser but I promise I'm not! I am just really evangelical about it because it has been an absolute lifesaver for me, and so few people seem to know about it and so many women are suffering. It works best for e coli infections, so see if your doctor can tell you if that is what's causing it (very likely, ecoli are the most common cause by far.) I used to get cystitis three or four times a year, now I get the odd twinge but nothing more. It is amazing stuff. You can also call the team at Sweet Cures (number is in that link) for advice. They are brilliant.

Also:
buy some Acidophilus from Holland and Barrett or similar. Boosts your immune system and fights e coli.

Follow these tips to keep your urine alkaline, or try potassium citrate.

Good luck, I hope you get some relief soon. Flowers

Original poster
smorticus · 21/08/2013 07:42

Thanks again for your replies. I was rudely awoken at 5am with even more severe cystitis this morning. Blood clots have returned and I am physically unable to move from the toilet (thanks MN for the mobile app!) have managed to collect another sample and will be on the phone to docs as soon as they open at 8:30. I am so annoyed that it keeps returning despite taking the sachets and antibiotics. I've been drinking plenty to try and flush it through but it is not easing at all this morning. Typical really as today is my first day off in over a week and was hoping to do something nice with DD Sad
I managed to download the book recommended earlier onto my kindle last night although not had chance to read it but hoping it has some answers / cures for me!!

OP posts:
HeathRobinson · 21/08/2013 08:21

Drina - I had some d-mannose before which seemed to fully clear cystitis after antibiotics. I ordered some the other day (50g tub) which should be here soon. (Can't wait!)

I think they send out postbox friendly sachets though, too.

HeathRobinson · 21/08/2013 08:23

Sorry, meant to say - smorticus, so sorry to hear of your pain. Really hope you get something sorted today.

No-one who hasn't had cystitis understands the pain.

SauceForTheGander · 21/08/2013 08:35

Poor you OP you have my sympathies. It's vile.

Lots of Blood in urine for me indicate a long standing infection - so it does seem you're either not being given enough of a dose or it's ineffective. Have you been on 3 day course? Also, I'm not given the anti b penicillin but one beginning with 't' .... It's either a 3 day or 7 day course.

The sachets just deal with symptoms associated with a bacterial cystisis and not the infection. If there's blood you definitely need ABs.

I had the same issue as you with a recurring infection and in the end just begged for the next anti biotic up to deal with it.

Thanks for the d-mannose link too - I will be ordering too.

HeirToTheIronThrone · 21/08/2013 10:12

I woke up at 5.45am with another attack too! Spooky... It's subsided a bit with lots of lemon barley though. Another thing I was told to do is drink bicarb dissolved in water - it tastes vile but makes things less sting-y! Drina I think you're right - it's surely the same infection that hasn't quite died and then re-surfaces. I'm going to try and go back to the GP as well, it's my wedding and honeymoon in the next few weeks and the last thing I want is having it then!

Original poster
smorticus · 21/08/2013 10:25

That is a bit spooky Heir! Maybe our bladders are in sync!

Have managed to speak to a different doctor who has agreed to investigate further so dropping more samples off this morning and booking an appointment for next week to discuss results and next steps.

Fingers crossed you can get sorted too heir as would be awful to have it on your wedding day xx

OP posts:
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