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HELP! Has my daughter got Interstitial Cystitis/Painful Bladder Syndrome?

(153 Posts)
carolineinthegarden Thu 02-Jan-14 19:58:29

Hi everyone, I'm new to this - I hope I'm doing it right.
I read some useful stuff on here about interstitial cystitis but it's all quite old and I wonder if anyone has got some current thoughts to share.
My daughter is 19 and she had bacterial cystitis twice last autumn. Ever since the second time she feels she needs to urinate ALL THE TIME. Not just frequent, but every second of every day (no pain though, just the ultimate in discomfort). She has had four urine cultures which came back negative for bacteria, but the symptoms don't go away.
We have tried homoeopathy, acupuncture and herbal medicine (from old recommendations I found on here) alongside all the normal tests (STI screening; ultrasound; x-ray; blood test). Not yet had the cystoscopy as we fear it might just make everything worse. She is now on a strict, mainly vegetable diet, and has not had any sugary stuff or caffeine/alcohol for almost 2 months.
We are all feeling despairing. The prognosis for IC patients seems very bleak and we don't want to admit that this might be her life from now on.
Does anyone have any idea what might work, or how long things like diets might take to make a difference?

carolineinthegarden Fri 05-Dec-14 09:26:34

Hi again, Rebecca smile

I know I've only just sent you an email, but thought I'd reply to your message on here too in case anyone else is reading and can benefit from it.

I drink a lot of water too, because nothing is worse than sitting on the toilet, feeling desperate, and not being able to go at all. I think staying hydrated in general is good, although Deborah advises not to drink too much (i.e. 3 litres or more), as this might make things too diluted.

I know lots of people benefit from taking a teaspoon of bicarbonate of soda dissolved in water, but this has never given me much relief. Others take Prelief before food, which I have never tried. I don't really have any tips myself - when I'm feeling awful I just tend to drink lots of water and eat a paleo diet because I'm scared that grains etc. will irritate my bladder.

My problems started with an infection which eventually stopped showing up on urine tests but (in my opinion) never really went away. There are some great links on this thread to doctors such as Professor Malone-Lee who believe that IC is really a biofilm/intracellular infection, and I'm fairly sure that this is my problem. However, I don't want to take long-term, high-dose antibiotics unless I absolutely have to, hence I've gone down the natural route!

All the best, and I'll speak to you soon smile

Rosie xxxx

Rebecca199021 Fri 28-Nov-14 23:13:03

Hi Rosie,

Thank you for your kind words and thank you very much for your PM.

Well when I have a flare its been pretty hard to cope, keeping busy helps, as I find that the more I think about this ' problem ' the worse it is ( probably the stress that is caused by thinking about it ). However, as we all know this can be extremely difficult when a flare is happening and this one has been lasting for a while sad

I try and drink a lot of water although I am not sure this helps and I also try not to go to the toilet too much - I know this is hard as it does offer temporary relief but unless the pain / urge is too much I try to hold for as long as possible as this sometimes helps in regulating my bladder again. I am unsure of anything else to help it, it usually comes and goes at will !

Do you have any tips ? As I said before I have gone through periods when this has not really been too much of an issue for me and I am trying to pin point what exactly has changed. Have you ever been able to pin point what started yours off ?

As mentioned in my PM I plan to see Deborah again and I will keep you updated.

Sending healing rays back !

xxx

carolineinthegarden Wed 26-Nov-14 22:06:35

Hi there, Rebecca199021,

I am so sorry that you have been suffering from such a young age. How do you cope on a day to day basis? I'm pleased you've had some relief in the past - at least that proves that you can feel better, even if you don't at the moment.

I have been seeing Deborah for nearly a year now and on the whole I think it's been helpful. I will PM you with more details in a minute smile

I really hope you get some relief through following Deborah's treatment plan. We will get there in the end, I'm sure.

Sending healing rays,

Rosie xxxx

Rebecca199021 Sun 23-Nov-14 22:39:31

Hi Rosie,

I came across this thread whilst researching IC. I have suffered with the symptoms of IC on and off since I was 18 ( I am now 24) - I have had three urethral dilatations and cystocopys an although I have had some relief in the past, the most recent dilatation has not helped by symptoms at all.

My most recent flare up was also linked with some severe stomach problems - bloating and stomach pains and I believe the two are linked. I noticed that you are seeing Deborah Grant at the Hale clinic and I have also been for an initial appointment last week. I am at my wits end and I am desperate to find some relief for my symptoms. Did you find seeing Deborah useful ?

Thanks

Rebecca

carolineinthegarden Sat 22-Nov-14 19:43:27

Hi Padar, I've sent you a PM (private message) smile

Padar Sat 22-Nov-14 11:26:08

Ps the cystoscopy is used for diagnosis .no changes afterwards .we will let you know about the treatment when it's started .

Padar Sat 22-Nov-14 11:23:49

I have read the thread now . My daughter is starting the installations soon . We will def try the diet. I'm going to get that book now .!

Padar Sat 22-Nov-14 11:16:50

Dear Rosie and Caroline and other mums / daughters with IC : I'm the mum of a now 16 year old who's been a year off school , has had a cystoscopy last week and has been diagnosed with IC . She doesn't even want to see her friends as she is too embarrassed . I'm homeschooling het .I would very much like to talk to you . Rosie , what's your age ( I've been to impatient to read the whole thread ). I'm going to join the COB forum soon . I would very much like to talk to you , and maybe for Rosie to drop my daughter a line , so she knows she's not alone ? She's struggling coming to terms with the diagnosis . Is there a way here I can give you my mail and email privately ? Otherwise I'll post my e mail here .

carolineinthegarden Fri 21-Nov-14 14:54:40

Hi rastagirl9, Rosie (Caroline's daughter) here smile

Yes, after more than a year of suffering I've learnt that IC doesn't go away, although I live in hope. Catherine Simone and many others have 'healed' their bladders through natural treatment, and even those who go down the conventional route can hope for periods of remission.

I am a member of both COB (the Cystitis and Overactive Bladder foundation) and ICN (Interstitial Cystitis Network) and both are invaluable resources, particularly for those choosing to go down the conventional route. Along the Healing Path is a fantastic book and really inspired me to persevere with the natural route.

Thanks so much for the advice about the cystoscopy - I haven't had one yet, but I know I will probably have to in the future. Did you feel that yours helped, exacerbated your symptoms or made no difference? If it made you worse, was this a permanent worsening?

Re: your frequent UTIs - have you considered the 'biofilm' theory? Lots of people have posted useful links and information on this thread, so if you feel your problem might stem from an underlying infection, their posts might be worth reading.

Thanks so much again for your words of wisdom. I hope the natural route is working for you and that your symptoms are improving.

Rosie xx

rastagirl9 Wed 19-Nov-14 00:04:53

The sad news is that IC does not go away, you have to learn to manage it. Drink a lot of water. For me, sugar, caffeine, chocolate, carbonated drinks and anything acidic causes me to flair. There is a great book called Along the healing path. There is a pill called Prelief that helps to get rid of the acid. She will learn what she can eat and what will cause flares. It's not fun. I also get UTI's more often now. There is an IC national website and the gal that runs it is really good with ideas. I refused the drugs the doctor wanted me to have, I did have a Cystoscopy and it is very uncomfortable but may be necessary. I was in very bad shape when I had mine. There are also support groups everywhere. For me I went the natural way.

carolineinthegarden Tue 11-Nov-14 11:49:10

Hi, Vb911 smile

How nice for you to be able to have coffee and alcohol again. I'm very jealous! I really hope the aloe vera and cranberry pills continue to be helpful. I've heard good things about aloe vera in particular, especially the Desert Harvest brand. Have you ever tried D Mannose? It's similar to cranberry pills in that it contains the active ingredient from cranberries which helps prevent UTIs. It's only effective against E.coli bacteria, though.

I can completely understand aeroplanes making you worse. I think my travelling days are well and truly over as I couldn't even contemplate getting on a plane in my current state - the coach journey to and from uni is bad enough!

Thanks for your kind words. Of course you haven't bored me - any advice is always so appreciated. Keep me updated on your progress if you get a chance - it sounds like you're improving overall; long may it continue smile

Rosie xx

Vb911 Mon 27-Oct-14 16:51:39

Hi Rosie

I haven't replied to you sorry! but just wanted to let you know how i have progressed..

I am not completely back to normal but I'm doing much better. thank god!
I have seen private urologists but it didn't really answered any of my questions.(and costed me thousandssad ) lost my faith in docs tbh.

I have followed pretty strict diet for a bit but it only made me more miserable so now I eat everything. I quit smoking when I became ill and i think that helped a lot. I also stopped drinking coffee and alcohol for a while but recently started consuming those again and if I'm drinking a lot of water it doesn't bother me. I think my major reasons for stress have gone and that impacted on my health overall.

I drink aloe vera pills and cranberry pills everyday (I don't know if they help or its a placebo effect either way it comforts me) Antihistamines also helps when it gets worse. I also use progesterone gel in the first part of my cycle (not too much and i put it on the lower part of the tommy) - i believe it helps me. And of course plenty of water!
Btw i don't know if you have flown anywhere but airplanes make it so much worse for me (Thankfully not for long)

Most days it doesn't bother me but sometimes it gets worse and I don't really know why. Symptoms are not consistent(the only symptom that is almost always there is that i can feel burning when I'm weeing) and sometimes something makes it better, other times it makes it worse.

sorry if i bored you! haha

I hope maybe anything from my experience might help you. I wish you will be 100% symptom free very soon! its wonderful you started your third year! Just don't let it put too much stress on you!

Xxxxxxxxxxxxxxxxxxx

carolineinthegarden Sat 18-Oct-14 09:17:51

Hi again Mai,

I'm so glad you've seen some improvement on the anti-candida diet. You're right, progress IS slow - I've been following a stict diet for nearly a year now and I'd say I'm around 50% better on a good day. So hang in there!

I follow a very specific diet designed by my herbalist. I eat a lot of salad, most vegetables (no peas, potatoes, beetroot, parsnips, swede), most meat and fish, most grains, one handful of seeds/nuts a day, a very limited amount of certain fruits, some sheep and goats' dairy products, almond milk, herbal teas... And, of course, I drink a lot of spring water. I think this diet is designed to give me all the nutrition I need, so that I can be on it long-term, without feeding the yeast too much. Perhaps your naturopath has recognised that without grains and nuts, your body might struggle to get what it needs. I know what you mean, though - it is SO confusing!

Please do keep me updated, and good luck with the diet. I hope your improvement continues.

Rosie xx

maiscout Mon 13-Oct-14 12:07:59

congratulations on making it into you third year! that is quite an achievement with all you've had going on! smile hope you're enjoying it!

Anti-candida diet is so-so. I feel a little bit better but the progress is slow, sometime I'm unsure whether I'm doing the right thing.

I just wanted to ask, since all the diet plans are so vastly different, what diet plan are you following? My naturopath said all veg including carrots peas and sweet potatoes are fine, and that it's also okay to eat lentils and beans and nuts etc which a lot of other people say are not okay! wish it was simpler than this!

Hope you're getting better,
Mai

carolineinthegarden Fri 26-Sep-14 18:20:46

Hi everyone, Rosie here. Sorry I haven't been very active on here recently - I've just moved into university for my third and final year (hooray!). When I first got this illness I was convinced I'd never finish my degree, so I'm amazed and delighted that I'm so close to finishing.

foxinorangesocks - thank you for your lovely message. Absolutely no need to apologise - I've become so used to talking about bladders, sex, cystitis etc. that it doesn't even embarrass me anymore! I'd already been with my boyfriend for a year when my problems started, so I don't think I can blame him. Sex is something I haven't even contemplated for the last 11 months so sadly I don't think that's a factor anymore, although it could, of course, have caused the problem in the first place.

I'm really interested in Angela Kilmartin - I might ask for her book for Christmas! I've heard lots of people mention the bottle washing technique and it's reassuring to hear that it helped you. I'd never heard of potters antitis before but I just looked it up and it sounds very interesting. I took uva ursi for a while to start with and didn't notice any improvement, but I'll add the antitis to my ever growing list of things to try!

Anyway, I'm so pleased you're feeling better now. Your kind words mean a lot to me and it's really lovely of you to take the time to comment. Thank you smile

maiscout - I'm so sorry you're suffering from recurrent cystitis. I'd be interested to hear how the anti-candida diet works for you - you're so right about people never updating after they've recovered. I think people tend to get better and then are too busy living their lives to come back and update threads etc.!

My treatment is herbs and the anti-candida diet combined, so I can't really pinpoint whether the diet itself is helping or not... However, the good news is that I'm definitely feeling better overall. I think eating a healthy diet can only help your body; whether you believe in candida or biofilms or anything else, the best way to help your body fight any illness is to give it all the nutrition and healthy food it needs. So you're doing the right thing.

Interesting about the mycroplasma - I've heard of it, but always thought it tended to be asymptomatic (I know a girl with IC who was treated for mycroplasma to no avail). It's definitely something I'd be interested in being tested for at some point, if my current treatment stops working.

Finally, you might want to have a look through this thread for the information I posted about Professor Malone-Lee. He treats women for biofilm infections which can cause IC symptoms or recurrent cystitis. The theory is that instead of recurring infections, you have one, lingering infection that hides in a biofilm, releasing planktonic bacteria every now and then. You might have already investigated this, but just in case, the link to Malone-Lee's website is somewhere on this thread.

I really hope you get some relief soon, and do update me on how the anti-candida diet is going. GOOD LUCK flowers

Once again, many thanks and lots of love to all smile xxxx

maiscout Thu 25-Sep-14 14:25:42

Also, I didn't check the full thread to see, but have you been checked for Mycoplasma? I read that Mycoplasma hominis can cause IC and is immune to a lot of antibiotics. If it's not candida, then it might be something like this.

Hope you're doing well.

Mai

maiscout Tue 23-Sep-14 14:53:35

Hi Rosie,

I'm so sorry you're suffering with this! I am also suffering with recurrent UTI's (along with many other symptoms sad) and am about to embark on the anti-candida diet too. I know from reading above that the diet didn't cure you, but did it help with symptoms?

I'm at my wits end and don't know anybody else who has ever done this diet. plus, everyone's stories of doing this diet I can find never follows up whether they recovered or not!

Hope you're doing better. Many thanks,
Mai

foxinorangesocks Mon 22-Sep-14 20:02:20

I've stumbled on this thread and wanted to add things, just in case they could be of any comfort. Rosie I'm so sorry for your ongoing bladder issues. It sounds as if things might be getting a bit better and I really hope so. I apologise if some of this is a bit frank but here we go.

I had my first uti at 18 after starting a new relationship at uni with lots of sex and going on the pill. This began an eight year ongoing cycle of cystitis, antibiotics then thrush then cystitis again. Eventually I had cystitis all the time and no bacteria was showing up. I remember sitting on the net at about 26 reading IC forums and seriously thinking my bladder needed removing.

For me, Angela kilmartins book literally saved me. I adopted her washing method (bit grim but it worked for me), I came off the pill and stopped wearing g strings and only cotton underwear. I started taking potters antitis and things slowly got better. I also split up with that partner not too long after that so who knows what combination worked there but, bar a couple of bouts, I've been largely cystitis free for a decade now though I guard against it every day and drink loads of water. I don't know if me and him were 'incompatible' but he was rubbish at foreplay and I don't think that helped. My older self would not be doing uncomfy sex ever! There are lubes and patient men who are caring in bed but I didn't know that at the time (sorry!)

I doubt any of the above advice is new but you did ask for any advice, even if it was embarrasing and sex hasn't been discussed much here but I realise it's all a bit delicate being a daughter and mum thread so hope this isn't out of order and apologies if it's a bit much.

Mostly I want to say that it is a bloody wretched, depressing, lonely condition and you are being very very brave. But I was there, had all the voiding/kidney scan tests, you name it. And I did get better. I hope you manage to find your answers very soon thanks

carolineinthegarden Mon 22-Sep-14 08:02:44

Hi Sunshinenow smile

Poor you - sounds like you had a very severe case of IC. I'm so glad it's calmed down now, and long may your remission continue!

I'm definitely open to trying bladder instillations in the future. My plan is to start off with the safest/least invasive treatments first, and then progress down the list of treatments until I find something that works.

I am currently seeing some progress taking herbs combined with a strict diet. If this progress doesn't continue, I plan to try other treatments, including the instillations smile

Thanks so much for commenting,

Rosie x

Sunshinenow Sun 14-Sep-14 09:03:07

Miracle, not moracle! Small keyboard.

Sunshinenow Sun 14-Sep-14 09:00:38

Hi Rosie

Tis me again, about the bladder instillations. worth trying, as they are not invasive (apart from have the stuff squirted in).

I can't tell ou how how bad mine of was. In my many cystoscopies the inside of my bladder looked like a bleeding moonscape. Had 32 confirmed infections in one year. Was incontinent from over active bladder. Horrible, horrible, horrible.

I will never know if it calmed down itself, or cystistat worked. But worth a try, I had no confidence at all, I just did I'd as my consultant urologist was all out of ideas. Here at leeds, not a moracle cure, but some reasonable results for some people.

carolineinthegarden Sun 14-Sep-14 08:50:43

Hi Dunn1993,

Poor you. It must be awful suffering for so long, from such a young age. How are you able to manage or treat Fowler's Syndrome now you've finally got a diagnosis?

Rosie did have an ultrasound and do a voiding chart last December, which were both fine, but she feels she may have developed retention since then so probably a very good idea to do another bladder diary. Do you know if your problems started with an infection, or did Fowler's Syndrome just develop on its own?

Thanks very much for the info - I've never heard of Fowler's Syndrome before so your story is very interesting! Hope things have improved for you xx

Dunn1993 Fri 05-Sep-14 09:29:53

Hi carolineinthegarden,

I have the exact same symptoms and they started when I was 19 too. Its been a long battle but I finally got diagnosed last year with Fowler's Syndrome which is urine retention in women. Although I go to the toilet all the time and constantly feel like I need to go I only release 200ml of urine so the rest is stored in my bladder hence why I need to go all the time. Maybe it would be worth getting your daughter to do a bladder diary and seeing how much her intake and outtake is. I asked my consultant if it could be Fowler's Syndrome and he dismissed me however when I saw a specialist at UCLH in London under uro neurology thats when it was confirmed. Apparently it takes on average most patients 5 years to see her as they get dismissed by their GPS and other specialists. It would be worth having a look in too.

carolineinthegarden Wed 23-Jul-14 09:35:23

Hi again, Vb911 smile

It's interesting that your symptoms disappeared during your period, as my symptoms always improve around that time of the month. It would definitely be worth getting your hormones tested - I've heard that an oestrodial blood test is more reliable than the standard one a GP will offer.

Stress can definitely be a contributing factor as it weakens our immune system and makes us more susceptible to pretty much anything... I've tried doing a bit of yoga etc. and it didn't seem to help me much, but I'd be interested to hear how you get on!

Regarding the diet, I didn't seem to have any particular 'triggers' either. However, since I've started eating really healthily and cutting out any potential triggers (gluten, sugar, simple carbohydrates, cow's dairy etc.), I've noticed a very gradual improvement - it's been 8 months now and I'm feeling 60% better most of the time. I believe that eating healthily gives my body the best chance of recovery, regardless of whether foods directly affect the bladder or not... But that's just my opinion!

I eat asparagus regularly and haven't noticed any ill effects, although it does tend to make urine smelly, so it could easily impact on the bladder. Everyone is different, so perhaps it would be wise for you to steer clear of asparagus for a while, just in case.

Yes, my herbalist is called Deborah Grant and she operates from The Hale Clinic in London. Feel free to PM me if you want her details.

Once again, I am so sorry you are going through this and feel free to talk or rant to me anytime. Really hoping you find some relief soon - this is such a horrible condition and I wouldn't wish it on anyone.

Lots of love. Xxxx

Vb911 Fri 18-Jul-14 21:33:06

Hey Rosie! Thanks so much for your reply! It is so comforting to hear from someone who is going through a similar thing! And thanks so much for sharing your experience it helped to look at other possible ways of why this happened to us!
Something really weird happened to me recently as my symptoms went away during my period!( at least I managed to have few normal days!) I started to think it could be something to do with hormones! Will have to go back to doctors nowsad
However I really believe it could also be something to do with my head...as my mum had kind of similar situation but she had constant pain in her stomach and problem with digesting for 2 years. She has lost so much weight and got really depressed but all doctors said she was 100% healthy..She started doing yoga and stoped stress get to her she cured her condition. Also I found that there is a condition that is very much like cystitis that could be caused by stress! One doctor from back home (I am originally from Russia) told me that. Maybe you can relate to that too.. once I feel something in my bladder I can't stop thinking about it and get so scared that only one thing I wanna do is sleep.
I don't think my symptoms get worse or better because of my diet...I ate no 'triggers' for a month and nothing changed! I started eating practically everything and nothing changed :/
Though once I think asparagus made it much worse?! I would never think it would that! But then read that you shouldn't eat it during cystitis...
Also r you going to herbalist in London? I'm currently strugling to find a good doctor! sad
Praying that this thing would leave us alone!
Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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