Cystitis is ruining my life

[hev37]

Hi all, I have been having an awful experience with Cystitis and my GP seems so reluctant to do anything about it. In October I had a really bad UTI which went into a kidney infection, it took 5 different antibiotics to shift it. Since then I have these “attacks” of pain which feel like I’m in the middle of a really bad UTI. I buy the Cystitis sachets which help a wee bit but not by much. I went back to the GP yesterday and got told that sometimes these things happen and that there’s not much they can do. I spend about £20 a week trying to find ways to help myself, I drink shed loads of water, I wash down there in the morning, once I’m home from work, before and after sex (my poor DP doesn’t want to have sex in case it leaves me in this crippling pain). I have to pee constantly to the point people notice. I’m so fed up. I just want to give up and surrender to the fact that this pain is just a part of my life now. Any advice :(

DD has this problem, have you tried Manoose D? This worked for her, but the powder not the tablets which are huge!

Sorry D Mannose

Honestly I would go back to the GP. Is there another doctor in the practice that you could see?

Go back to your GP and make a point of how miserable this is making your life. I fully sympathise- I was having them at least once a month (usually twice!) until 3 years ago. I also recommend you look into D Mannose. I buy the 1000mg tablets off eBay and honestly they have changed my life. I take one tablet every single night without fail and If we have sex I take another after I’ve been to the loo afterwards. I only drink water, avoid sugary and alcoholic drinks and make sure that I am emptying my bladder frequently and that my pee doesn’t ever get too concentrated. Obviously I do the usual of wiping the correct way and peeing after sex (even if it’s just a dribble). But I did all that before anyway and the only thing I added 3 years ago was the D Mannose tablets. You can take them every few hours like you would the antibiotics and sachets if you get a flare up, but I just take one each night before bed. My consultant maintained that he’d never heard of it and it was all nonsense, but it’s the only thing I have changed and my life is no longer centred around my next flare up and next set of antibiotics.

Also I’d recommend you wash less frequently. I find that a bout of thrush can have very similar symptoms to cystitis and the constant washing is unlikely to help anyway as you can’t possibly be washing the afflicted area anyway. You’d be better off making sure you and DP are clean before sex (hands and genitals) and then just going for a quick wee afterwards. Do you have an urgency to go to the loo when it’s bad? I find I do during a flare up but not when I’m back to normal. The D Mannose definitely helps with the urgency but if you have a need to go RIGHT NOW as soon as you need a pee then I’d look into you having an overactive bladder. A friend of mine has this and it’s almost as debilitating as constant UTIs as when she needs to go she has to go right now, no two ways about it. She’s yet to find anything that helps but it’s worth thinking about whether your symptoms are actually UTI like or whether they’re more like OAB. I’d still push the GP for a referral to a Urologist though.

I would also recommend d mannose, daily. Keep taking it! It will help but just keep going with it as it may take a while.

The only thing that worked for me is PINTS of water (Google water overdose and don't go mad but I used to drink 3-6 pints over the space of a few hours). Just stay sat on loo so you can just relax and wee a little bit at a time. Sachets didn't help me, as pps said don't wash with soap, no alcohol or sugar. Keep cold wet flannels close at hand to dab on your bits to soothe. And ask another dr for help, cystitis /uti pain is the most awful uncomfortable pain in the universe and you shouldn't have to suffer

You could ask for a referral to a urologist, they could put you on a long term antibiotic. I used to have recurring cystitis and was prescribed a daily long term antibiotic and for the most part it does really help, occasionally I get a flare up and increase the dose myself from 1 to 3 (I have a bulk amount of them at home) and can stop it getting worse by taking them at an early stage.

Ok thank you I have ordered the D Mannose stuff off of Amazon. I’ve read a bit that using bicarb soda can help instead of the v expensive sachets has anyone tried this? Also have a Drs appointment for next week and I won’t be leaving there till I get some form of help, when I mentioned the word Cystitis I felt he seemed a bit clueless as to what that even was so I’ve requested a female Dr. Thank you so much for all your help any advice is welcomed and appreciated hugely x

update if anyone ever suffers from this condition and happens across this post listen to these wonderful folks’ recommendation of DMannose tablets. They are incredible- three days in I have had no issues what so ever (something I’ve not had in months). Thank you so much. WONDER PRODUCT FOR CYSTITIS

The power of mumsnet! So glad you are feeling better!

I had about 6 UTIs in the first 6 months of marriage, it was awful.
I spoke to my GP and she put me on a low dose of antibiotics for a few months, to be taken every night, in order to clear up any infection that wasn't completely killed by the usual rounds of antibiotics. It seemed to work, I didn't have another UTI for 12 months, they're a lot more infrequent now (I get about 1 a year, last one I had was during pregnancy).

Have ordered for dd, had problems since last summer, 5 courses of antibiotics. I've relayed to her, she doesn't feel as alone now. Must be antibiotic resistant bugs!