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[Katejo]

Oh I have ..... as well as the sample not being delivered to the Lab. on time when the GP took a batch himself  .  They work 9-5 after all so not every sample can go through the system and if the Hospital is making demands on equipment?

The young reception guy who took it from me looked as thought he wasn't quite sure what to do with it. He did ask someone else but still seemed vague.

[sidse]

I will try the tea and the coconut oil, thanks. Talking about samples, the nurse said that my sample given on Friday and having tested negative on the dip test, is being sent to the labs. Is there much point in that? The sample I gave was after a day of drinking lots and taking cymalon so the sample was very dilute.
I now have an upset tummy to add to everything- think it is probably the fosfomycin.
I have upped the dose of vagifem to see if that makes a difference but as I am now doing lots of different things, it is hard to see the wood from the trees. I am sure if men were prone to UTIs, there would be a cure by now.

[Daisydot]

I'd take a step back now sidse if it was me,I've had to do this before as you get yourself so caught up in trying to resolve it.
Keep up the vagifem even doing a nightly dose to get you over this flare up,then use the coconut oil to prevent any bacteria getting a grip,slap it on as many times as you want to from morning to night but not at same time as vagifem,it's excellent for thrush etc,keep it room temperature so it stays runny,it has no shelf life as it's antibacterial apparently.it solidifies if you put it in the fridge.
Try this for a day or two and take the redbush vanilla tea instead of usual tea/coffee,you shouldn't need sugar with the vanilla one,also drink plenty water,you can also take a spoon of the coconut oil so it will work from both directions,it also helps with constipation which will take away the pressure from your bladder and help reduce the inflammation.it really is trial and error wether it's I.C or inflammatory bladder or whatever name they decide to give it,you have to test things till you find a regime that works for you it took me a long long time and I was in a terrible state with it and couldn't risk any more reactions with antibiotics,my immune system was in a really bad way.you do have my sympathy it's no joke lying there focussing on that pain so keep plodding away you will get there.good luck xx

[sidse]

Thanks Daisy. It sounds like you have been through the mill. Can I ask what worked for you? What reactions did you get from antibiotics? I am still taking the antihistamine that you suggested too but I guess that that also takes time to kick in. Did you use the UK Badder association , I think it is called COB? I have had a look at their site and scared myself silly as there are lots of stories of people who have IC and it sounds almost impossible to treat. There is one doctor in London who specialises in it and most people see him privately which would be out of the question for me. Really, really hope I don't have that. This is my third bout in 10 months. The first settled down using Dmannose. The second was definitely caused by too much coffee etc and was treated with the fosfomycin but I think this one has been caused by becoming run down and dehydrated and possibly reacting to a new medication.

[sidse]

Wow Daisy, I thought that it was just me not liking the site. I much prefer this one. If this does continue, I will also try to get an ultrasound. Is the ultrasound invasive stuff just to rule out cancer? I know about prelief but it is expensive. Diet wise, the only thing that I am missing is tea otherwise I can steer clear of coffee wine tomatoes and spicy food. Did you ever try amitriptyline to dampen down the pain enough to sleep?

[sidse]

Sorry Daisy, one more question. For the treatment of the VA, did you use vagifem or the cream - sorry can't remember the name? I am thinking that the vagifem may not be doing the job for me as all the burning and discomfort is at the opening of the urethra. So far, I haven't had any pain further up. I will of course try the coconut oil.

[Daisydot]

The ultra sound is non invasive sidse so get that “C” word out your head that's another reason I didn't like that site,you will work yourself into a frenzy.you can beat this with a bit of work and research.amitriptyline is very good at dampening down the nerves in the bladder so you could try it it if the other stuff doesn't help but give it time it's a slow heal with the bladder,do all the stuff you spoke about but remember when you feel better doing no take risks or you'll be right back at square one and it begins all over again.as I said I'm no expert but this is what worked for me intitially so be patient and try this suggestion for a few days and see how you go.good luck xx
Stick with the vagifem sidse the estriol cream may not agree with you but you can smear it outside and near the urethra opening if you wish to try it.

[Daisydot]

Ps one of our ladies advised me to point the vagifem applicator at my belly when I put it inside rather than aiming to go high up internally as she had found that helped the urethra more so that's what I do.hope you understand what I mean lol.

[CLKD]

Keep up with the atrophy treatment ;-)

[sidse]

I think I get what you mean Daisy about positioning the vagifem. I am getting through my vagifem stock at a rate of knots so I hope they don't refuse another prescription. I am trying to imagine that my bladder and urethra are healing ( sounds a bit daft I know) and am using AZO at night only to prioritise sleep.

[Daisydot]

That's good sidse fingers crossed you'll find some relief soon x

[sidse]

I am trying my best to be patient but I am getting no relief from my symptoms. I also now have an upset tummy which is probably down to the Fosfomycin. It is affecting my quality of life as the burning/discomfort is constant about from about five minutes after I wee then the discomfort starts building again. Any ideas?

[Daisydot]

All I can add is keep that urine ph as neutral as you can by drinking plenty water and avoid acidic fooods and drink,if nothing I'm suggesting is helping quickly enough for you then you'll maybe have to visit your gp again and see if they can make any suggestions but as I said it's a long process to heal the bladder and urethra and the slightest thing can set you back very quickly,all I can do is report from my personal experience,things may not be so cut and dried for you but you have no options really other than persist with what your doing.if you think the vagifem is the cause of your irritant you could try non hormonal hyalofemme internally,I used that before the vagifem,you can buy from amazon.its quite pleasant to use but it's all trial and error.you have to decide, it could just click all of a sudden.good luck.x

[sidse]

Thanks daisy, don't want you to feel that I am not grateful for your advice, I am so grateful. I am just not very good at handling pain and discomfort - I don't suppose many people are. I have just upped my dose of D-mannose as I had stopped taking it when I took the antibiotics. My son has just made dinner- it was a posh salad with a tomato and rosemary dressing. Obviously, I didn't have the dressing!!! Thanks for taking the time to help me x

[Daisydot]

Don't apologise sidse there's no need all I can do is give you the stuff I had to do,it's so hard to try and get things stable again but it's also too easy to over complicate things by fighting on too many fronts,that's why I said I'd personally step back,look at the situation and then start with the very basics and yes it'll take time but you don't really have much choice there is no quick fix when your trying to sort these things out ,it has to be one obstacle at a time and sometimes like when you treat the V.A The urinary problems will resolve as well.time and patience is all you need now as there not many options left.dmannose is only useful if you have an ecoli infection so I'd save my money on that one just now it won't do much.give the basic remedies a chance to work before introducing the other stuff or you won't have a clue what's helping.keep plodding away and good luck x