Interstitial cystitis hell!

[Bunnymumma]

Hello!

Has anybody had/got this? It looks as though I'm suffering in my second trimester and frankly, any advice would be welcome!

I'm drinking a lot of water, keeping clothing loose, not using any perfumes soaps etc and I'm in absolute agony. Doctor doesn't seem to know much about it and my midwife is great but says it's all about pain management as there's no cure. I'm taking paracetamol when it gets really bad and using a hot water bottle, but I'm just wondering if anyone has any unexpected magic aids? If only it was normal cystitis! That's a bit easier to treat!

Thanks everyone x

My DSis has this. When she is having a flare up she stops using detergent on clothes and does a higher temperature wash and cuts out spicy food. Hopefully if will settle soon.

@SnuggyBuggy Thank you! I'll see if any of this helps. Your poor DSIS. I'd never heard of it until I had it and boy, what a shock!

Have you been diagnosed? How long have you had this?

TBH it sounds more like an infection that hasn't cleared.
I had to for 20 years- sometimes I was housebound due to needing a wee every 15 minutes.

I'd not jump to a conclusion yet that you have IC.

What treatment have you had and why do you and the midwife think it's IC and not an infection that needs different or more ABs?

I've been diagnosed by the doctor as there is absolutely no infection showing in multiple urine tests and exams etc. Plus my bladder is inflamed.

I've just been to see a homeopath and she was wonderful, so hoping I've come away with a management plan now.

How have the diagnosed the inflamed bladder?
It could well be hormonal- mine used to to flare up before a period and disappear when I was bleeding each month.

I'm afraid I don't believe in homeopathy though in my desperation did try it.

What helped me was and is diet.

It's different for everyone, but basically I only drink boiled water or some herbal teas. I don't drink booze and have not had a drink for 20 years. I avoid all acidic fruit and veg ( no oranges, kiwi, pineapple, even some berries though blueberries seem ok), no spicy food like curry, no garlic, no onion, no tomatoes, and I am gluten free too.

There is a bladder support group for all of this which you might find helpful and I think the diet is listed there.

I have this and it’s utterly awful. I’m 38 now and I’ve had it since i was 15. At times it’s much worse than others and there doesn’t seem to be any rhyme or reason to it.

Things that help me (and this is just my personal experience) -

Taking a high dose (1000) of vitamin c daily (does something to urine, can’t remember quite what but seems to help).

Taking a daily long term antibiotic - you need a urologist to prescribe something like this generally. I find even if I don’t have an infection per se the antibiotics help to keep anything else away or stop it developing into a full blown urine infection.

Wearing proper cotton knickers. Never wearing sanitary pads- mooncup or reusable pads only.

Using oestrogen internal cream- plumps up vaginal walls and dryness and seems to help keep everything moist and as it should be which helps control irritation (I am 38 so not into the usual age for prescribing it either).

I also drink a lot of water and do all the usual things. Sometimes I find having a double shot of espresso after drinking a lot of water seems to enable me to wee better! No idea what’s going on there but I feel more comfortable afterwards.

Good luck.

Sorry I’ve just seen you’re in your second trimester so clearly some of my ideas won’t help but worth sharing for the future.

I had this and I took D Manosse powder daily and I’ve not suffered from it again in over 7 years now.
I also used to take a cranberry supplement daily that I got from Boots. Alcohol seemed to bring my symptoms on with a vengeance when I suffered. As did lots of sugar in my diet

@WindinTheWillowsLover Thank you so much!

The old camera up the hoohah diagnoses my angry bladder! It's almost a relief as there have been zero infections but it would be great if it was easier to treat!

This flare up has been three weeks long so far.

I'm a big old hippie, so the homeopathic route is more for me, though I'd be willing to try almost anything, to be honest. I've kept my food bland (being vegan helps with this as tofu just tastes like air) and I'm going to give these natural options a good week of testing before I rule them out.

@Fairylea Thank you!!

Yeah, being pregnant is adding to the complications I have to admit!

@Frosty66611 That's one of the things I'm now taking! Great to hear it worked for someone!

@bunnymumma it took about 6 months but it eventually completely disappeared and has never come back. I hope the same happens for you

I'd be careful with the Vitamin C- it's ascorbic acid and I find it can really make things worse (but everyone is different.)

The diet thing has to be long term. Someone who was on these forums went to a dr in the US who does the diet regime and it was very very strict- no sugar for at least 6 months and all the rest very bland.

I have a very healthy diet, but most is prepared at home from scratch; I rarely eat out as everything these days had bloody garlic in it which I just don't get on with at all.

If I do eat out I go for something really plain like grilled fish and ask for no garlic etc if they usually put it on.

You've got to allow the inflammation to go down which can take weeks. I suspect yours has a lot to do with your hormones- it may well go away later on.

Hi - also another long term sufferer.
Diagnosis is usually by examining your bladder using a camera and taking some biopsies. With IC you typically get tiny bleeds as the bladder wall is stretched when it fills, and inflammation in the bladder wall detected by examining the biopsies.
What worked for me was:
Cutting out all caffeine - that was massive irritant to my bladder. But it takes while to feel the benefit.
Using a tens machine at night for pain relief so I could sleep.
I was given a range of different medication but the only thing that worked was a low dose of Amitriptyline which I took for a couple of years but was then taken off it as the doc felt long term it was a bad idea.
You can also have bladder washes which can reduce the irritation.
There is a fantastic US support website with great forums for help.
www.ichelp.org/

You have to keep a note of things to figure out what flares you up. There is an IC diet which you can follow although I must admit it's quite restrictive.

Some people also find that drinking too much water can make it worse, although it's a balance as you need to keep your urine diluted.

I would advise you take a look at the forums on the IC network and make an account, the people on there are fairly responsive and extremely helpful

I had this in the third trimester of my second pregnancy. Only thing that really and truly helped was strong painkillers- prescribed codeine.

@ReggieKrayDoYouKnowMyName Dod yours bigger off after delivery? I'm very much hoping this is hormonal, as @WindinTheWillowsLover suggests and that it might calm a little after pregnancy!

I heard this described as having your bladder scrubbed with a cheese grater.

@Toddlerteaplease Sounds about right! Also a bit like dipping your privates in Alka Seltzer!

Sounds horrible

Yes, it went away as soon as my daughter was born! Thank God because it was just the absolute pits. And having bladder cheese grated is exactly right!

Try a tens machine - it really worked for me.

My DSis can go years without a bad flare up. She hasn't had kids so don't know if pregnancy will affect it.

I had this too - a low dose of amitriptylene was like a magic bullet and it has never come back (7 years ago)

I got some intimate good bacteria support from the homeopathic yesterday and...no joke...not a peep from lunchtime onwards! Fingers crossed, but I'll update in a few days, just in case this works for me and could be helpful to anyone else!