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

(185 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 Mon 09-Jun-14 16:02:12

Hi everyone, sorry I haven't been very active on here - been having Internet problems. Anyway, thanks once again for all the replies smile

Nadinez9 - I'm so sorry you're going through this as well. I find it very worrying that your pain began after the cystoscopy - I think I'll definitely delay having the procedure for as long as I can, and only go down that route as a last resort. If you are interested in finding out more about Professor Malone-Lee, some of his findings are summarised here: Are you referring to Doctor Fugazzotto in America? I believe that he was the first one to investigate the bacteria connection, and helped lots of people right up to his death in 2008 (I think!). I absolutely loved reading Along the Healing Path - it was the first thing that really gave me hope after this nightmare began. Thank you so much for your post and your kind words, and please feel free to contact me if you ever need someone to talk to. Praying that you find some relief soon.

VivaLeBeaver - good luck on your antibiotics journey! Keep us updated on how you're getting on smile

Prudence89 - I'm shocked that you've been suffering for so long. This must have been so awful for you; I'm so sorry. Do you have any idea what sent you into remission? All I can really say is good luck, and please do keep posting. I hope your urologist can help you go back into remission asap.

Slugpickeruper - I'm so sorry you've been suffering for 10 whole years. You must be incredibly strong to have coped for so long - I feel like I'm losing my mind after just 8 months! I have to agree that conventional doctors/urologists have been pretty awful in my experience. I don't think that IC is taken very seriously, because it's not life-threatening... When in reality, it has an arguably equally devastating impact as some terminal illnesses. Good luck with your appointment in July. I think bladder removal is only considered as a last resort, but I, like you, would do it in a second if I was sure it would help. I'll keep my fingers crossed that something helps you before you get to that stage. If garlic tablets help you, you might want to investigate the possibility that you have a biofilm infection, as garlic has strong antibacterial properties. Then again, it's also meant to be a natural anti-fungal, so it could just be helping with the thrush side of things. Either way, I'm glad you've found some things that give you a bit of relief. The diet question is a tricky one - I think everyone's triggers are probably different. I'm happy following my elimination diet (no gluten, no dairy, no sugar, no carbohydrates, no caffeine, no alcohol, etc. etc.) for the time being, while I work out what my personal triggers might be, but I'm glad you seem to be okay eating a slightly more varied diet. From everything I've read, it seems like you need to try diets for a long time (months or years) before you know whether it's working or not. What a pain! Anyway, thank you so much for your lovely message and please do feel free to contact me if you need some support.

Lots of love to all,

Rosie xxxx

Vb911 Tue 08-Jul-14 17:52:36

Hey everyone!
Rosie I feel like I have absolutely the same thing as you do and hope u don't mind me writing��. I always used to get cystitis before and normally it was always after sex and antibiotics used to get rid of it pretty quick. Recently I started taking pill for the first time and after month I stopped and got cystitis (as usual) and it went away but after a month I got it again and got cefalexin which didn't work...well it got rid of bacteria and symptoms got better but never went away completely! I had so much antibiotic taken but non of it helped. It's like my worst nightmare and I felt so desperate. I have done sti checks and utrasound and everything was fine exept I had scar on my kidney( which was hurting recently) but I have never had problems with kidneys before. I read about IC and now terrified it won't ever go away!
However, I do believe this is something to do with stress..and taking the pill?!anyway I was wondering if it is worth doing the cystoscopy? And have you done it yet?
Feel so so sorry for everyone who is going through this...I only have it for a month and already about to climb up the wall! Wish everyone to get better!

carolineinthegarden Wed 09-Jul-14 09:20:34

Hi vb911, I'm glad you found my thread. I am so sorry that you are going through something similar - it's really awful, isn't it? I can't believe how many people suffer with problems like this, or how little doctors understand about our condition. Of course I don't mind your message - feel free to post, or to PM me, if you ever need to chat with someone who understands the thoughts and feelings you are having.

It's really interesting that your 'IC' (I am only using this label for want of a better term, not because I think you have an incurable bladder condition!) started after taking the pill, too. From what I've read I gather that the pill increases our chances of getting UTIs due to hormonal imbalances, but obviously what you and I are suffering with is a little more than a standard UTI. I know lots of people think that the pill, or other contraception such as the implant, was a factor in them developing 'IC', but I don't think a link has been scientifically proven... Yet. There are so many hidden dangers in the medicine we take that have not yet been fully explored - I used to think the pill was completely safe, but since I've been ill I've heard horrific stories about it. I'm not sure if you're still taking the pill or not, but if I were you I'd come off it!

I still haven't had a cystoscopy. In all honesty, I think it's a bit barbaric to shove a camera up into an already inflamed area, so only want to have it done once I have exhausted every other possibility. There are lots of doctors (my herbalist and Professor Malone-Lee included - more information about them should be listed in another post on this thread) who think that 'IC' can be treated, and even cured, without a cystoscopy. If you would like to have the cystoscopy done for your own peace of mind, that is entirely your own choice, but it seems to be about 50/50 as to whether it will help or make things worse.

Personally, what I think has happened to me - and to you - is that our infections have become biofilm infections, making them undetectable by normal culturing methods. This seems to be the only logical explanation as to why an infection could 'disappear', but leave behind a condition with identical symptoms. There are many theories about what causes 'IC' - candida, inflammation, leaky gut - and perhaps they all play a part, but the biofilm theory seems to fit best with my symptoms. There are people who have recovered from agonising cases of 'IC' with long-term antibiotic or herbal treatment. I am feeling 60/70% better some days, after 8 months of herbal treatment. Perhaps this is something you'd like to research further if you think the biofilm theory might apply to you.

One other thing I would recommend is reading Catherine Simone's book 'Along the Healing Path'. If nothing else, this helped me realise that even with a diagnosis of extremely severe 'IC' (a diagnosis which neither you nor I have got), recovery is possible. Catherine Simone suffered for a long time with truly debilitating symptoms, and she got better... So why shouldn't you or I?

(Sorry to keep using the 'IC' label, btw. I don't believe that you have 'IC', because I don't really believe that it exists - it's just a generic name for a lot of treatable bladder conditions that aren't yet widely recognised.)

Sorry that this post is so long, but I hope something I've mentioned will help you, or at least give you hope. Hoping and praying that you find some relief soon. 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 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!

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

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 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

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.

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

Miracle, not moracle! Small keyboard.

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

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

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,

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.


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 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,

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

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!


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

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 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

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 .

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 11:26:08

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

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

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

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 ?



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