Endometriosis UK
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Permenant cystitis - What do you recommend?

I went to GP at the beginning of the week because I have had permenant cystitis since xmas. It even wakes me up in the night as I have constant burning. I am up at least twice every night to the loo and I have to drink at least one glass of water during the night to prevent it being really bad in the morning. I also can sometimes not control my bladder if it is really bad. The GP has prescribed some antibiotics which don't seem to be having any effect and she checked my urine and said it looked free of infection. I have heard of interstitial cystitis (think thats what it is called), although I don't know whether my symptoms match this. Does anyone have any experiences of similar symptoms and if so what did you do? Or can you recommend any ways of trying to deal with the symptoms. Thank you x

5 Replies

Oh Katt, I feel awful for you, I used to suffer from that and it was the most horrible thing. I suffered on & off for about 3 years in total, had every kind of urology test going and it showed nothing up. Anti-biotics didn't really seem to help, and most of the time I had no infection either. There is a condition called 'Painful Bladder Syndrome' which is what I had and what u probably have, I think its common enough in people with endo, might be the same as interstitial cystitis, I cant remember. I found if you take a really strong painkiller like tramadol at the onset of pain and completely resist the urge to pee (sooo difficult - but worth it) it went away quickly. Or drink them sachets for cystitis, but u need to completely try and not pee until the pain goes away (get in a hot bath or something), then u can pee. That seemed to be the key to it with me!! But the good news is - I was eventually prescribed Amitryptyline which is an anti-depressant but it blocks the pain receptors or something, it worked an absolute treat. I came off it about 3 yrs ago and the PBS has gone away completely. Ask your doc for it. I hope you feel better soon, take care :-)


Hi Katt, have you checked out the endo diet , there is much to show that yeast and wheat in the diet can make cystitis worse , by feeding the bacteria, you may find that trying the diet or some of the suggestions may help to alleviate the problems , don't put anything in your bath water , and take care with bathing products , I believe that interstitial cystitis may be caused by changing hormone levels , this is discussed in the endo diet books as well ,having said this a friend I have is still on hrt patches at the age of 74. , this is the only thing that stops hers,,

Hope this has offered a bit of advice And you find the answers to help you



Sorry to hear that you have been struggling for so long. I had recurrent infections until i had my first lap (touch wood). I stopped having any type of fruit juice including cranberry and this has made a huge difference. I watched embrassing bodies last year (channel4) and a young woman had your symptoms and she had interstitial cystitis and had an op to confirm it. You may still be able to watch it online. I hope this helps. Don't let any doctor fob you off. You need to insist on being referred to a specialist if the doctor can't make any difference.

Take care x


Thank you ladies for your thoughts. I have finished the antibiotics now and altho its not as bad at the moment it still hasn't gone. I am finding drinking barley water helps. I should get further test results back next week but will definately go back to the dr. The prostap seems to be helping with the endo pain but dr wonders whether it is causing the cystitis to be even worse because apparently cystitis can get worse as you go through the menopause.



Over the years I've had so many antibiotics for cystitis, kidney infections and pelvic infections. When the lab results came back they were always negative. I now know that my endo is back because the first sign is feeling like I have a urine infection. Have you ever been told that your endo grows on your bladder? That's where mine grows and near my kidneys, urinating is painful and as soon as I need to go I have pain in my tummy. Hope you find out soon what is, and feel better. X


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