I don't know how much more of this I can take

Posted , 6 users are following.

HI everyone

I don't even know where to start. I'm 37 and on day 6 of cystitis and seriously considering just moving into my bathroom!

I have had water infections on and off for the last 4 years. They tend to occur when my IBS flares or after sex. I have been to the doctors so many times some times when they test my water there is an infection and other times there isn't. I do find trimethoprim helps but some times it takes 2 courses back to back to see any improvement.

My husband is not supportive in any way and gets mad and me when they flare as I have to cancel plans we have made- which obviously doesn't help. I was a single parent for years and used to suffer quite badly with anxiety and I do think my anxiety doesn't help the situation.I have been in tears several times over the weekend and t's bringing me down so much. I can't leave the house or go to work and I'm having to cancel plans with my daughter friends and family.

I'm currently waiting for the doctors to open but don't think I can travel the 10 minute journey there :-(

I have taken buscopan for the bladder spasms which helps, paracetamol and cranberry cystits relief satchet to help but this morning it's bad as ever.

Is anyone else in the same situation? Please tell me how you manage this x

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12 Replies

  • Posted

    Laura I am so sorry to hear this, and you have my utmost sympathy.  I too suffer from recurring cystitis but not as bad as you .  I bought the book by Angela Kilmartin ( sorry cant remember exact title) on Amazon.  Some of it is a bit dated but the priniciple is sound and she gives really good advice about what to do during an attack.  Basically do your urine sample first.  Then, drink 250 ml water straight away plus repeat this every 20 minutes for three hours !No more , no less.

    During that inital 250 mls take one of the cystits powders ready available in all supermarkets etc or mix your own using one level teaspoon of sodium bicarbonate to the water, and repeat this twice more during the three hours.

    Anaglesia such as Paracetamol or ibroprofen and repeat in four hours.

    Put a hot water bottle at your back and one between your legs and keep warm.

    Take a strong cup of tea or coffee on the hour for the three hours just to act as a diuretic to flush out bacteria, but water should do this anyway.

    There are other tips and good advice in her book.  Sometimes the bugs in the urine are coming from the bowel, such as ecoli and she goes into more detail in her book about this.

    I take Dwaterfall Manoose , both during a flare up and as a prophalytic and find it good.  Google it and you will see where to order from.

    Hope the above helps until you can get to your GP.  Sounds like you may need referral to a urology department for further tests.

    Another helpful resource is the Cystitis and Overactive Bladder Foundation, you will get lots of support there and they are great at pointing you in the right direction for further help.  

    Take care 

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  • Posted

    Hi Laura

    I have had regular  bouts - and likewise they occur after sex. Soemtimes i find just drinking pint after pint of water calms it down but sometimes not. I have just had a cystoscopy and biopsy but have yet to have the results. 

    What I can say is that 'Sylk' available from Boots pharmacy helps significantly and is lovely and silky! 

    Some people say condoms help but they don't appeal to me ..

     

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  • Posted

    Hey laura i to suffer the same as this although i don't think i get it as frequent as you! The docter needs to refer you to get your bladder look at I'm still going back and forth to the docter to try and get a referral. Have you googled diet of what foods are a good and bad for interstitial cystitis you may find cutting out certain foods help. There are alot of food triggers out there so have a read. Also have you got your husband to read up on it just so he can see the symptoms you could also get him to watch some videos on utibe i know there are some on there of woman talking about how painful it is. My husband finds it difficult but does his best to be patient with me i also suffer from trigeminal neuralgia so if its not ine thing its the other.

    Lots of love. Xxx

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    • Posted

      Hiya Alie I have been to urologist they checked my bladder and it was emptying fully but wasnt anything to worry about.they recommended having a regular prescription for antibiotics for the onset of a flare but my local GP thought I disn't warran this as last 3 cultures apart from protein were clear.

      I have spent hours googling symptoms and it does sound like interstital cystitis but I really notice this flares when my IBS flares. Doctor has given me another course of trimethoprim and then I am going to go back and see the doctor. I need help to find a way to manage this.

      Thanks for the advice it really helps knowing your not alone!

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    • Posted

      Was the lining of your bladder checked because with interstitial cystitis its normally something to do with that being damaged. I've been going to the docters loads telling them its what i think i have but they keep sending me for other tests I've got a back and hip and pelvic examination to look forward to on Wednesdays! But i suppose if it rules something else out them it can't be such a bad thing.

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    • Posted

      No it wasn't to be honest I have anxiety so I went for the procedure and couldn't go through with it but I can't live like this so I'm going to have to try. I'm going to have a chat with a doctor at my local GP as I keep getting referred to different locums which doesn't help

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  • Posted

    Dear Laura,

    I can understand where your coming from and how depressing and painful it can be as a fellow sufferer. I have been suffering with these continual infections for over 4 years now and did get referred to a urologist by my GP. Ask your doctor to refer you as it needs further investigations as mine did. Maybe then your husband will understand how distressing it is for you, and give you a bit of support. I am unable to take anything with cranberry in but also been told that cranberry doesn't actually get rid of the infection. It might be worth you trying D Manose which you can buy from a Healthfood Store. It has been very successful for some people so it might help you also. The other thing is to make sure when you wipe yourself after a wee to wipe from front to back, so infections can't transfer from the bowel. I was told once that we ladies are not designed correctly as the annus and bladder are so close together, but I also make sure I wipe myself with at least 3 wet wipes after each bowel movement as this stops the transfer of infection as well. 

    The medication you have been subscribed didn't work for me but you could ask your doctor to give you Ciproxacin tablets instead. I was at first referred to a bladder nurse who was very helpful and put me on a continual course of antibiotics. This consisted of one each night and alternationing between different ones each month. This did keep my infections at bay for a few months but then they would start again, so I had to go into hospital overnight for a bladder stretch which might be what you need. Your consultant will also have a look at the health of your bladder at least to give you peace of mind.

    I hope you can get some results but you definately want to ask your doctor or a referal to a Urologist if this is causing you so many problems which I'm sure it is.

    Best wishes

    Gill

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    • Posted

      Thanks Gill, the sad thing is I got married 2 years ago and although my partner and I both have 1 child each from previous relationships we would love to have one together but it's just not happening. The fertility clinic has advised that there is nothing wrong with either of us but I think personally the fear that that time we are intimate could cause a flare deters me and the stress of it all takes its toll. Which is so sad in itself.

      I will look at decaf tea (I dont drink coffee) as I had never thought of that. I have noted the tablets down to and see what the doctor says when I go later this week.

      It's such a horrible thing to keep getting but it's comforting to know that others can understand it.

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    • Posted

      I really hope your doctor can refer you and hopefully you can stop the worrying and stressing when lovemaking can cause another flair up. Drink plenty of water after sex and it may help to flush you out and hopefully you will get pregnant soon.

      I'd love to hear how you get on so please keep in touch.

      Gill

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  • Posted

    Another thing you can try is decaf tea and coffee Laura as its better than caffeine for the water infections.
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