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

(130 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: iris.ucl.ac.uk/iris/browse/profile?upi=JGMAL68. 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 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

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

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