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Interstitial Cystitis (IC) - can anyone help?

(22 Posts)
Angie8 Mon 27-Jul-15 15:25:16

My beautiful, clever, 19 year old grand-daughter has suffered with Interstitial Cystitis (IC) ever since she was 10 years old. It has become progressively worse over the years and now she is never free of pain or discomfort and has to catheterise 5 or 6 times a day. She has been in hospital for several operations to stretch the bladder, injections etc. all to no avail. She is now becoming immune to a large number of antibiotics and pain killers because of regular use. We have tried dozens of possible 'cures', alternative therapies etc. but nothing works as yet.

She is naturally very depressed, particularly about her future as in spite of her many abilities she is losing contact with her friends, has no prospect of a career and has had to abandon her university course, having only been able to attend about a third of the lectures.

Needless to say, I am really very worried about her and her state of mind, and wonder if anyone can offer any advice on relieving this awful condition?

Teetime Mon 27-Jul-15 15:46:47

Hello Angie I am sorry to hear about your granddaughter's painful condition and you understandable distress for her. I don't know about this specifically although my younger daughter did suffer mildly from this in her teens and still has some bladder problems now some years later. we took her to a very eminent urologist who felt that after doing a cystoscopy as there was nothing physically wrong that there was an emotional element for her- she was stressing about school and everything really. I'm not saying this is the case for your granddaughter but I am willing to bet the whole thing is making her very unhappy. Is it worth trying to tackle things from that angle.? The other thing I always say is get a second opinion if you are not happy and/or ask for a referral to a specialist centre. I hope things work out a bit better for you all soon. flowers

Claudiaclaws Mon 27-Jul-15 18:10:44

Hi Angie, I have suffered from Interstitial Cystitis for years It has improved but I still have flare ups. These are some things which help over a period of time.
I take the herbal drops Uva Ursi every day. and one Cranberry tablet a day ( not the the juice, it is too acidic and doesn't do the bladder lining any good.
I don't drink white wine, Fruit juice, I do drink decaffeinated tea and coffee.
I don't eat,
Pineapple {they have an enzyme which destroys protein
Oranges or satsumas etc
Bananas{ I'm no too sure of this but I think they can have a bad effect on the bladder
Definitely NO Chillis or chili powder, I do eat curry now but not hot.
If you think something is acidic don't eat or drink it.
Some advice a Urologist Consultant, gave to me was, If you are sure you haven't got an infection, don't drink lots and lots of water, so that you need to go to the toilet all the time, but enough to stay properly hydrated.
Please do get her to try this regime, if I think of anything else, I'll write again.

Elliebeth Mon 27-Jul-15 18:34:45

Hi Angie. I too suffered with this awful condition for years and agree with everything Claudiaclaws says, also avoid anything perfumed when bathing but I'm sure she already knows this. There is a web site called the cob foundation and there will be lots of people on there with suggestions of things she may not have tried. Mine virtually went after the menopause so maybe mine was hormone related. Even now that I am almost symptom free I still get the odd flare up but nothing like what it was. Big hug for you both xx

Luckygirl Mon 27-Jul-15 19:23:47

How very distressing for her Angie8 - I am glad to say I have never suffered from this, just from occasional cystitis. I cannot imagine how dreadful this must be. I do hope that someone manages to find some treatment for her.

mcem Mon 27-Jul-15 19:48:12

My heart goes out to her. My dd suffers too, along with a related condition - hunner's ulcers. It's very debilitating and difficult to manage. I really hope a specialist can help. My dd was mid-thirties when it hit her and since then it's been repeated op's and catheters too.
I'd love to think that your dgd might respond better as she is much younger.
Claudiaclaws and elliebeth's posts are encouraging.

Deedaa Mon 27-Jul-15 21:54:09

I am so sorry for your poor granddaughter, she must be beyond depressed and there seems to be so little help available. Normal cystitis has made my life a misery at times, I can't imagine what she must go through.

Rowantree Tue 04-Aug-15 15:52:32

I've just read this and it must be dreadful for her, and for you seeing her suffer so much.

I take d-mannose twice a day. It works for bacterial cystitis and there is evidence that it works for interstitial cystitis too. Is that something she has tried?

It isn't a drug as such. It's a naturally-occurring plant sugar and it has a calming effect on the bladder. It has few if any side effects (the only one I've noticed is excessive wind when I have had several doses of mannose during an attack of cystitis).

You can get it on the internet but it is expensive - it's worth buying a few at a time to cut costs. I take it everywhere and I would never be without a bag of it because nothing else works for me and I was running out of effective antibiotics.

If you are interested I can PM you with a link to a website where you can get it.

Good luck - any cystitis is horrible :-(

rubylady Tue 04-Aug-15 17:04:15

I once had a self help book on cystitis. I know your DGD might be a lot worse but I was not responding to antibiotics and was fed up of suffering so I tried other ways to help myself. I'll try to remember what the book said as I can't find it on an Amazon search.

One teaspoon of bicarb of soda in a glass of water, on the hour every hour for three hours, so three lots of it. (Tastes awful but did the trick for me.)

Following this, one cup of strong coffee as a diuretic. A jug of water too, be careful not to drink too much as too much can be dangerous too.

On going to the toilet, take a small normal water drinking bottle and put some warm water into it, (nothing else). Wee, then after wiping, pour water from bottle over area and blot carefully with gentle toilet paper, do not rub. Do this every time the toilet is needed. Be very careful with cleaning after defecating as e coli is present and can be a cause of cystitis. Be persistent, do this every time the toilet is needed.

Always wear cotton underwear, no tight pants, no tights at all.

Always empty the bladder and do the bottle wash before and after any sexual contact.

This is all I can think of just now but if I do think of anything else the book said, then I will let you know. The powders in the packets did absolutely nothing for me and so I would end up at the docs, given tablets and they did nothing much neither. After suffering for some time when my ex husband and I first got together, then I found this book and it really did help. Well, either that or I just went off the old man!

I do hope this helps, please let me know. smile

annodomini Tue 04-Aug-15 17:36:51

Angela Kilmartin's books have long been popular among the many cystitis sufferers. this one deals with interstitial cystitis as well as 'ordinary' bacterial cystitis.

Katek Tue 04-Aug-15 20:49:25

is your Gd on any medication such as NSAIDs? I was plagued for years with IC and had bladder stretches/antibiotics etc, I was taken off my NSAIDs for other reasons but since their withdrawal I've hardly had any problems at all. Turns out they were contributing to the IC

overthehill Fri 07-Aug-15 23:07:43

I have suffered over the years and found it can come on due to three specific reasons.
1)Not drinking enough water
2) Not rinsing away soap/gel after showering properly
3) Make sure never (never) get faeces near the vagina. E-coli can live quite harmlessly in the bowel but will cause cystitis if it enters the vagina.
Before sex make sure your partner washes himself round the genital area and also rinses himself thoroughly.

Eloethan Sat 08-Aug-15 13:41:11

Angie8 I can offer no advice but can only say how sorry I am to hear about your poor grand daughter. I hope some of the suggestions here are new to you and may be of some help.

gettingold Tue 18-Aug-15 20:30:59

Hi all I have just joined I wanted to offer some suggestions for your poor grand daughter.......there is a Professor in London who treats embedded bladder wall infections.....which I can almost guarantee your grand daughter has IC is a diagnosis meaning we havnt got a clue......there is also another doctor who treats in the same way.....the standard NHS testing does not pick up embedded bugs..,..and the short term low dose antibiotics have caused this major problem in treating them......both The Professor and doctor have pateints from 4 to 90 plus.....if you want there names then please in box me as I assume I am not allowed to mention them on here.......they both have lots of young ladies your grand daughters age.....and both are completely against cystoscopys and urethral dilation....they are barbaric and cause more problems than they solve.

vonnie73 Fri 02-Oct-15 10:09:47

I'm so sorry to hear about your grand daughter.
I've been having recurring bouts of cystitis since August and have put it down to not drinking enough water the day before.
I've bought the D-mannose(expensive!) and Nature's Biotic hoping that it will help.
I'll post the results in a few weeks.
The last time I had a sample tested a couple of weeks ago there was no infection but a few blood cells which was the reason I wanted a test.
Has anyone associated emptying ones bowels in the morning with cystitis symptoms not being quite so bad afterwards or am I imagining it?

Elrel Sat 03-Oct-15 12:08:14

Very sorry to read of Angie8's granddaughter suffering so much as to change her life. Do hope gettinggold's contacts can help her.
I'd just come on here looking for advice for a far lesser problem - op (original post) has certainly put it into perspective for me. I'll stop feeling sorry for myself and get out of the house now and see my GP on Monday.

PRINTMISS Sat 03-Oct-15 15:35:52

Vonnie73 I am in the throes of another bout of Cystitis the second within a couple of months, although I do seem to get it at least twice a year. Can't seem to shake this lot off, and will go to the doctor if it is still with me next week, at the moment I have a dreadful cold which is not helping. I don't think you are imagining the last paragraph of your post, but I do wish someone could give me a cure for the awful pain which runs right across my shoulders up into my neck and causes me to clutch my hands so tightly it is painful to release them, when I feel the need to 'go'. Fortunately (I am touching and and crossing fingers) these are short lived.

Elrel Mon 05-Oct-15 01:00:18

Thanks, rubylady. Bicarbonate did the trick, I'd forgotten about that tip!

Bh368 Wed 16-Jan-19 00:50:10

Hi gettingold
I know this thread was from years ago but hoping you see this
Please can you let me know of the urologist name in London? Thanks

spain19 Tue 19-Mar-19 20:23:42

Is this thread still going? I have few questions about cystitis

clementine Sun 24-Mar-19 15:15:30

So sorry about your granddaughter . It's Professor malone Lee in London who is the expert on imbedded UTI's. There is a brilliant private face book page that she can join. It's an amazing group who have so much information that can be accessed on their files. Really well worth a look . Think it's called embedded UTI support group. D Manoose is good but only for e coli infections, it won't work for any other . I

Busymama Thu 01-Oct-20 07:32:32

To anyone suffering from IC, have you ever checked your hip range of motion? As it turns out, tight hips muscles lead to tight pelvic floor muscles, including the paraurethral muscles - mimicry bladder pain. I had a hip impingement from an injury I had completely forgotten about.