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

(134 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?

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 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 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 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 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

Slugpickeruper Sun 08-Jun-14 22:07:33

Hey Rosie

I have bladder problems too since I was 17. i am now 27. Mine started the same way as yours - with a minor UTI I woke up with one morning. I went into remission during pregnancy with my daughter and then afterwards only had 1 month flare when she was 2, then I had my son and suffered with recurrent vicious UTI which would not clear when pregnant with him. I was fine for years afterwards. Until 2012 when a bad UTI set it off again and I have now had 2 years of symptoms, the longest I have ever had.

I have not yet had a cystoscopy as sometimes my symptoms are quite mild, so I don't want to rock the boat. I would like to know what is going on in there though.

I have at times the constant urge to go and hyper-spasming bladder, burning pains, urethra pains.

I have found the GP and urologists pretty crap so far but then again I have not been assertive enough about the impact this has has on my life (I have been suicidal at points). So when I next see them in July I am not going to leave until they listen to me. I would be up for trying hydrodistention, ami, instills maybe (although I don't fancy them much), and even bladder removal I would consider (although I don't think they would do because my capacity is normal on scan).

I have found that taking cod liver oil and high dose kyolic garlic tablets helped a little.

I also drink kefir which is a strong natural probiotic. It does not seem to irritate my bladder even though it is on the "caution" list of the IC diet.

As for special diets, I have tried a few. I tried gluten free for a month and nothing changed so went back to normal. I tried a raw foods juicing diet and I felt constantly tired, hungry and all the juice flared my bladder. Now I am following the IC diet - I use the IC Network Diet Sheet and I eat all foods from the "safe" column and small amounts of some foods from the "try it" column but I NEVER touch any of the foods from the red list. It seems to help with the intensity of symptoms and burning but not so much with spasms and pains.

I am also interested in the thrush aspect as i constantly have thrush even though I have not taken antibiotics for 2 years, the hormone aspect because I have severe PCOS , and also the bacterial theory because it makes sense that an infection triggered it so maybe it is a "hiding" infection.

I hope you are OK as can be in the circs and that you post more about your experiences.

Prudence89 Sat 07-Jun-14 14:30:02

Hi Rosie
I do understand, I am now 47 have had this illness since I was 19. I was told it was all in my head by Gp etc. it is terrible that there is so little understanding. My flares would usually be brought on by a UTI then this would go and a flare would start. I have had many years of remission, currently in a bad flare now after uti and near period, which always makes it worse. I am hoping to see uro soon. Like you I have thought of assisted suicide in moments of desperation, this is no the answer, we deserve better. Hang in there xx

VivaLeBeaver Thu 05-Jun-14 22:56:55

I had my appt with the Prof yesterday. I've been prescribed high dose antibiotics and have to go back in two months. Very thorough appt with loads of explanations of how the bacteria hide away iniside your bladder cells and don't get picked up often by lab tests. I was in my appt over half an hour.

I can ring or email them at any point with any new symptoms, questions or if I need a new prescription.

Nadinez9 Thu 05-Jun-14 14:39:17

Hi Rosie, I hope you don't mind me joining in with your thread. I am going through exactly the same as you and have read with interest everyone's responses which have all been very helpful. It is such a shame we have to try and solve this puzzle ourselves! I understand your concerns about the cystoscopy but also understand it is the only way of gaining a confirmed diagnose. My symptoms started in January and I had the procedure in March. I am not a great advert for it as I found the procedure extremely painful! They did diagnose me with IC but at a very early stage. Like you I don't have pain, just urgency and frequency. After the cystoscopy I unfortunately started to feel pain in my bladder which I feel was from stretching it. I am searching for alternative treatments to help with pain but also like you want to find out what has caused the inflammation in my bladder. I would be very keen to find out more about Prof James Malone Lee. There was a professor in America who helped many IC patients by doing urine broth tests which looks deeper into bacteria. He also believed IC starts from bacteria and yeast and by identifying specific bacteria he could then prescribe the correct antibiotic. I am sure you already know of the book "along the healing path" by Catherine M.Simone, she discusses this in her book.
You also may not have IC. A close friend suffered with all of your symptoms for over a year. The urologists couldn't find anything wrong with her so diagnosed her with IC. She went for a second opinion and was put on antibiotics for 3 months and has luckily never looked back. I hope this happens for you too.
So sorry for such a long message!!

LittlePeasMummy1 Sun 01-Jun-14 11:57:34

Just to also add, my urologist agreed with puggle, re the cystoscopy, that's why I went down that route. Also, if Hunners ulcers are found, they can be resected which apparently can lead to great symptomatic relief.

carolineinthegarden Sun 01-Jun-14 09:54:29

Wow, I can't believe how many replies there are on here now - thank you all so much for taking the time to comment.

LittlePeasMummy1 - I hadn't been taking any vitamin supplements until very recently when my herbalist prescribed me Vitamin A, so, sadly, I can't blame this for my symptoms! I've tried my diet with and without apples, but it doesn't seem to make any difference - but thanks for the very sensible suggestion. I have tried medication for an overactive bladder but never tramadol - I will definitely look into this if I feel in desperate need of some short term relief. Please don't worry, I know that you meant well and am so grateful for all your help.

SarahMumsnet - of course I don't mind; the more the merrier! I've sent you a PM.

VivaLeBeaver - GOOD LUCK! I'm eagerly awaiting an update on your appointment with Professor Malone-Lee, who sounds like a wonderful, dedicated man. There isn't a smiley for 'keeping my fingers crossed', but that's what I'm doing smile

puggle01 - thanks for the information re: cystoscopy. I'm quite confused now, as every doctor's opinion seems very different. My urologist certainly didn't tell me the cystoscopy was necessary to rule out other conditions, just that he needed to have a look at the level of inflammation. I'm starting to believe that there is no wrong or right when it comes to IC because it's such a mysterious disease - maybe in a few hundred years time when they finally find the cause, we'll know whether a cystoscopy is necessary or just barbaric!

I know I'm repeating myself here but thank you all so much for your input. Love to all xxxx

puggle01 Sun 01-Jun-14 09:46:04

Amongst many other conditions ? (posted too soon)

puggle01 Sun 01-Jun-14 09:22:10

Completely disagree with your professor! How can he/she exclude other conditions as mentioned including CIS?

VivaLeBeaver Sat 31-May-14 21:58:10

The professor says that cystoscopies for someone with these symptoms is unhelpful and pointless.

puggle01 Sat 31-May-14 21:53:18

Hi Caroline - the cystoscopy is the only way to check out the bladder wall - scans can't do that reliably. If someone has symptoms of urgency/pain etc the inner lining of the bladder wall needs to be inspected -it might look abnormal. A biopsy would then need to be performed to confirm the findings (as we don't have microscopic vision!) TB and endometriosis are rare sure though there are some other common conditions that are important to exclude- ~I'll not list them all as its probably not helpful and could cause you to worry. However, I have seen someone with classical IC type symptoms who's cysto + bladder biopsy showed schistosomiasis (a rare in the UK "tropical" infection though I'm not saying this is relevant to you) History alone is not enough!

LittlePeasMummy1 Sat 31-May-14 21:13:44

Ps Rosie, I really hope you didn't think I was being flippant by suggesting that you try not to make this the sole focus. I think your symptoms are a bit different to mine, in that I have good and bad hours most days and in the good ones I can get on with things. Yours sounds relentless and that must just be horrific

VivaLeBeaver Sat 31-May-14 21:13:05

Rosie, I'm going to see the Prof for the first time next week. Will post again after I've seen him and let you know how it goes.

LittlePeasMummy1 Sat 31-May-14 21:07:02

Hello Sarah, I'd love to know how too please!

SarahMumsnet (MNHQ) Sat 31-May-14 20:29:29

Hey Rosie, hope you don't mind an MNHQer posting on here. I've been through precisely this, and am now entirely symptom-free. Do PM me if you'd like to chat; there is hope!

LittlePeasMummy1 Sat 31-May-14 20:15:49

Hi Rosie. I've been thinking about you this weekend. I just wanted to double check that you are not taking a vitamin supplement? I can't tolerate them at all and neither can a lot of IC sufferers. Also, I'd be tempted to stop eating apples, just cut out for a few days and see if it makes any difference. I hardly ever eat them these days and suspect they may cause me a problem. Finally, I know that you don't get pain per se, but the constant urge to wee might be caused by your bladder nerves being over active, in a similar way to what happens with pain. The reason why I'm telling you this us that I've found that when my bladder feels particularly 'nervy' if I take a single tramadol, it seems to break the cycle of nerve over-stimulation and gives me a bit of respite for a while. You'd have to get these from your doctor and you can't use them all the time as they are very addictive. But as a strictly 'one off' treatment, ( I do this literally once every few weeks, and only take one which is a low dose) I've found that they can work very well. If you don't fancy that, codeine containing painkillers are the best over the counter drugs for this.

carolineinthegarden Sat 31-May-14 10:59:41

Hi all, Rosie here again.

LittlePeasMummy1 - thanks for your long post. I have tried marshmallow root tea to no avail, but I'm really glad it helps you. Like you, I am sceptical about alternative practitioners who claim to be able to cure the incurable, but I'm willing to give anything a try! I would never rule out something that might help just because it doesn't fit with my particular belief system, so I intend to try everything on offer - conventional and alternative. I appreciate the advice about not letting 'IC' control my life, but I'm not sure how anyone could possibly concentrate on anything else with this all-consuming overwhelming urge to wee all the time! If you can ignore your symptoms and live a normal life, then you are a much stronger and better person than I smile let me know how you get on with amitryptiline, as this is something I'm very keen to try. Thanks again for all your advice.

ozymandiusking - sorry to hear you are suffering as well. I haven't had any fruit (other than 1 apple or pear a day) or caffeine in 6 months, and it doesn't seem to have made a blind bit of difference! I'm curious about the cranberry capsules - if IC isn't bacterial, how do they help exactly? I've joined COB and found their newsletters to be very interesting smile I'm pleased that amitryptiline is helping you - does it help with frequency/urgency, or is it just the pain it relieves? Hope you are coping okay and thanks for your help.

puggle01 - I haven't had a cystoscopy so haven't yet been officially diagnosed with IC. I had lots of other scans, though, to rule out bladder stones etc., which were all clear. I was never told that the cystoscopy could be used to rule out endometriosis or TB - how exactly does this work? I was told that the cystoscopy was merely to look for inflammation, alongside a biopsy to identify mast (?) cells. That's why I haven't had it yet - I was given the impression that all it would tell me was 'you have an inflamed bladder', which I already know!

Thanks, once again, for all your comments, it really does mean a lot. Hope everyone has a lovely weekend xx

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