does anyone else have interstitial cystitis?

[LoveAndSqualor]

Wondering if anyone can help ... About two weeks ago, found I was needing to pee ALL the time. I went to the doctor's, thinking I had cystitis (though it felt different: no burning, just constant feeling of needing the loo), got antibiotics. They didn't help, so I went back on Monday, and he tested for a UTI, but all clear. He thought I might possibly have pelvic inflammatory disease (though highly unlikely, as no real chance of an STD) and stuck me on killer antibiotics for that. I've been taking them, but no better at all - constantly feeling like I need to pee, no relief when I do, general unomfortableness ... ugh. The other thing he mentioned was interstitial cystitis, and looking at the symptoms, it does seem a very close fit . I've also therefore cut out caffeine, alcohol, fruit juice and so on for a couple of days, but again no effect yet.

Does anyone else have it? How do you manage it? It's driving me NUTS at the moment and making me feel really miserable ...

@Mrbumpoid wow that is an interesting read! I guess we will see what happens when I have my next cystoscopy on November 7th! I know my bladder won’t be any better though as I can feel it’s not! Praying I don’t need biopsies! And I definitely wouldn’t want to be out to sleep for them either as that would really work me up! Anyway how are you feeling today?

Not too bad. I went out and actually had a glass of wine so this may be a really bad decision.

What do you mean by taking a biopsy? Do you mean during the cystoscopy?

@Mrbumpoid yes during the cystoscopy if I still have my red patch which I know I will they will want to take one.

@Mrbumpoid @Jellybum2019 how have you been this week? I have an MRI scan next Thursday.

I just wanted to share my latest experience of a cystoscopy that I had done today. So they said there was still a small red patch and asked for the equipment to take a biopsy by the time the nurse came back with it the doctor said the red patch had gone! She was looking and looking and couldn’t find it anymore! I’m not really sure what to think as she said it was really prominent before! Odd!

Hi All,

I'm sorry for resurrecting this thread but, I had all the symptoms that the OP was describing in her post.

I started doing some research on the NHS website and I saw that if you take Cetirizine Hydrochloride (which is found in allergy pills) it treats the hystamine that may be in your bladder giving you those symptoms.

I thought why not try it when I have hundreds of the tablets let over from hay fever season and they worked straight away. I am not going strong 2 weeks without the symptoms. It feels like I have my life back.

I take one tablet a day which is 10mg of Cetirizine Hydrochloride. I also checked this over with my GP who says it isn't a problem.

I will leave a link to a generic boots branded one but I just use tablets from B&M which were a £1 for 30.

www.boots.com/boots-pharmaceuticals-hayfever-and-allergy-relief-10mg-tablets-cetirizine-hydrochloride-14-tablets-10086382

Never take antibiotics for water problems untill you have had your water tested . Then get the right antibiotic for the infection. It means you grinning and bearing it for a few days but at least you get the right antibiotic for the infection.