Interstitial Cystitis - someone tell me I'll feel better soon!

[MummySparkle]

What the title says really. I've had symptoms since Monday. They haven't been too bad, not the unbearable searing pain that I've had before, just a constant dull ache and pain passing the last few drops of urine. It's coming in waves, I think to do with how full my bladder is? When it's bad walking is so painful, I have to do a 'pregnancy-style waddle' to stop the acid wee shaking around.

I gave a urine sample to the GP Friday. It came back as clear, but with some white cells. They ciuldnt send it for a culture over the weekend, but I'm to go back monday if it's still here.

Does anybody have any advice / experience / wisdom? Cystitis sachets have helped a little, as have painkillers, but nothing is shifting it. Just feeling rather miserable.

[HermioneWeasley]

Drinks lots and go to OOH service if it's worse over the weekend. Based on a clinical sample of me and my mates, it doesn't shift without ABs

Sorry not to be any help.

[TeenageMutantNinjaTurtle]

Do you mean interstitial cystitis or just normal cystitis? Interstitial cystitis is normally a chronic condition that can cause suffering for years....

If its just normal cystitis, drink a she'd load of water, as much as you can and you should start to feel better. If it gets worse you may need antibiotics ....

[MummySparkle]

Thanks. I have a feeling it might be interstitial cystitis. Ive had recurring bouts of cystitis all of my life. Recently the ones I've been to the drs about haven't shown up any bugs.

The symptoms come and go, but I have real difficulty emptying my bladder completely, and I have cystitis symptoms at least once a week, they don't usually linger quite so much though

[hiddenhome]

Have you identified what the trigger is?

I suspect I have IC and I'm restricted with the type of fluids I can drink.

I totally avoid:

Tea
Filter coffee - okay with instant
All alcohol apart from vodka
Fresh fruit juice
Fizzy pop

Citrus fruits are also a problem. As are pickles and stuff like balsamic vinegar.

To calm it down only drink Evian water for a few days and it should settle. Try to avoid acidic foods.

Slowly introduce things and see if you react.

[pinkfrocks]

to the list above add tomatoes, curry and all spicy foods, onions, most fruits- raspberries and strawberries, grapes, raisins etc,- cola, coffee, any drink in a can. Just drink water and eat bland food.

[MummySparkle]

Thank you. I went back to the Drs today with another urine sample, and this time it did show up with an infection. I've got some antibiotics now. As I was driving back home I started feeling a few spasms in my lower right back. I'm feeling very sorry for myself now :(

Usually I know that alcohol makes me likely to have a flare up, and definitely citrus makes it worse too. I think sex might cause a flare up, not from the bacteria, but more from the 'bruising' of my bladder duringn penetration. We don't have rough sex by any stretch of the imagination, I think my bladder is very delicate though. I always have to spend ages goingn for a wee to wait for the last drops. My bladder never feels completely empty. If I don't wait for those last drips then I am likely to get a flare up.

And tights. I can't wear tights without a flare up either.

I try to go to the loo as soon as I need to go, but it's so hard with 2 small children. "No more mummy weewee" is a familiar cry in our house!

What do you do to help prevent it?

[hiddenhome]

You have to totally avoid the bad foods/drinks. You can never have them, as they'll cause chronic inflammation which will progress to a full blown flare up. Don't just avoid them during flare ups.

Use lots of plain lubrication during sex and pee straight afterwards.

If I feel a flare up I take some uva ursi tincture for a couple of days and it settles right done. Uva ursi, or bearberry as it's known, is the treatment they used to use prior to antibiotics. It's fantastic and works fast. It kills bacteria and soothes inflammation. I use the Vogel brand as it's good quality. Costs about £9 a bottle, but lasts for ages.

I also drink marshmallow herbal tea - this is good for the bladder too. Goldenrod is another herbal tea to look out for if you have an irritated bladder.


Don't use uva ursi too often as it can cause toxicity for the liver. The others you can take as much as you want.

[Peacheykeen]

Sorry to hear you're feeling so rough op . I had a particular bad dose of this once and a hot water bottle really helped with the pain until the AB's kicked in Drink plenty of water and good old cranberry sachets.

[Dowser]

My dd suffered badly with this all her teenage years . It was a nightmare. Finally she took the bull by the horns and went on a special alkalising diet for five months. She ate only vegetables a few nuts and drank only water. It must have sorted her out as she and her husband tried for a baby and he's 11 now and she's pretty much been ok.

She also saw a homeopath. I've seen her get up in the middle of the night to have a hot bath she's been in so much pain.

Angela kilmartin's book gave good advice. When I get a twinge my doc told me to take pot cit.

Although cranberry works for some it doesn't work for all. D mannose can work for some too.

[VivaLeBeaver]

Well ive had it for five years.

Though I'm now under treatment under the top consultant in the country for this and he doesn't believe in interstitial cystitis. He says its a meaningless and incorrect label.

For me the only thing which is working is high does antibiotics. I've taken antibiotics every day for nearly five years. The first four years a low dose which the GP put me on and the last year high dose abx.

The consultant im under says that standard hospital urine tests miss 85% of infections. He treats on symptoms, he says if you have the symptoms of an infection then you have an infection. All my lab tests at the local hospital came back clear.

[VivaLeBeaver]

Oh and things I've avoided for the last few years; alcohol, tea, sex, coffee. I need to cut down on fizzy drinks as well. But tea was definitly the worse. I could literally feel my bladder start to spasm within 30 mins of having a cuppa.

[MummySparkle]

I've been on antibiotics since Monday. Things are slightly better, but I'm certainly not 100%. I was only given a 3-day course so I think I'm going to have to go back on Thursday.

We had a birthday party last Sunday and I had lots of fizzy drinks. I'm wondering whether that might have had something to do with it.

To add insult to injury AF has just arrived. I think I might just shut myself in the bathroom until I feel better!!

[MummySparkle]

That's really interesting vivalebeaver. I used to be on a daily dose of trimethoprim when I was a child and under a consultant urologist, but I'm not sure they actually helped.

[VivaLeBeaver]

Yes, it was 10mg of trimethropin I was on for four years. It helped with symptoms but didn't cure anything. Anytime I didn't take Them for a couple of days the symptoms would come straight back.

[gatewalker]

I found this book helped greatly, OP:
www.amazon.co.uk/You-Dont-Have-Live-Cystitis/dp/0380787792?tag=mumsnet&ascsubtag=mnforum-21

[Mrbumpoid]

Hello all,
With interstitial cystitis...

1. can it come and go during the day? Sometimes mine can be painful but then suddenly I’m fine for a bit then it's back.
   
   
2. did d-mannose help - how long to take effect?
   
   
3. did tolterodine help - how long to take effect?
   
   
4. did you follow the diet and did it help?
   
   
5. how did yours start?
   
   My consultant is currently deciding whether it is interstitial cystitis or just still recovering from three separate catheters after childbirth (2 months ago) and then some further surgery.
   
   He hasn't done a cystoscopy yet.