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
1 like, 12 replies
Evelyn63 laura55079
Posted
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
laura55079 Evelyn63
Posted
Thank you for replying to me and for the advice I'm going to look up the book now and the manoose anything is worth a try!
lynne64237 laura55079
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 ..
laura55079 lynne64237
Posted
Thanks Lynn I drink so much water and it's not really helping this time unfortunately. I will look into sylk tho thanks for the advice
Alie1234 laura55079
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
laura55079 Alie1234
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!
Alie1234 laura55079
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.
laura55079 Alie1234
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
gilly10 laura55079
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
laura55079 gilly10
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.
gilly10 laura55079
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
gilly10 laura55079
Posted