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

[carolineinthegarden]

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?

Have sent you a pm. ( probably useless but maybe worth a shot?)
X

Dear Rosie,

I'm so sorry you are having such a hideous time. I have no experience of this particular problem but I do have a chronic pain problem. Please do not give up hope. Many things can help even if you are not cured ( and you may well be).

You don't mention what pain medication you are taking. If you haven't been to a specialist pain clinic please insist on a referral. I found a pain management course really helpful and am doing things I didn't believe possible, not through any drugs or treatments, just a decision to do it anyway. We learned Mindfulness which helps, too.

I still have pain. Sometimes it overwhelms me but I treat it like an angry lion. We have to live together. It's better that we get along. I need to keep a close eye on him but overall we manage.

My life is better than ok, it's good. Spend your savings on good things: hot stone massage, champagne, a consultation with a top pain specialist.

I have felt despair. It passed. It's not the life I thought it would be but it's pretty good.

Don't go to Switzerland.xx

Am in a similar situation with cystitis symptoms since beginning of December although I think mine is associated with some sort of prolapse although GP thinks otherwise!

I have been taking D-Mannose powder on and off and it seems to be helping only downside is the windy tummy feeling but that could be just me?

HTH

I have it. I take a low dose of trimethropin every night. If I miss a cople of doses the symptoms come back but with it I've been fine for past few years. So apart from paying £7.80 a month or whatever it is now everything is good.

I can fully sympathise with Rosie. I have had the same problem for the last 10 months and it really is very debilitating at times.

Mine started just at the time we were going through fertility treatment and whilst all the tests done by gp were coming back normal, the clinic where we were having treatment cultured bacteria - if a sample is normal on a dip test with no white blood cells present then the nhs won't try and culture anything because it's unusual to have any infection present.

I was prescribed antibiotics but I don't think the course was long enough as it didn't really seem to knock the infection on the head.

Since that time I've been back and forth to my gp and each time I've thought I've had an infection, the dip test has been clear - I'm not convinced. When it hasn't felt like a full blown infection I still need the toilet most of the time and have horrible bladder pain.

I'm now under the care of a lovely urologist and am having a cytoscopy next week. She thinks I either have IC or an infection deep in the lining of the bladder. I started taking a low level dose of antibiotics (one that was sensitive to the original infection) and I have to say I feel so much better. Whether that's because they are reducing inflammation or dealing with a lingering infection who knows.

Did your daughter have a cytoscopy and if so, did the biopsy show anything?

It is such a horrible thing to have. I'm so tired from all the nightly trips to the bathroom and fed up with the discomfort during the day.

Rosie has to stay hopeful that this will be resolved or at least managed so that she can enjoy life again. It's worth getting a second opinion from another urologist if you're not convinced with what you've been told to date.

Sending you both lots of hope.

Thank you so much, everyone, for your kind words. Rosie has read all your messages and really appreciates them.

Matildathecat - I am so sorry to hear that you are suffering, but impressed that you have learnt to cope. Rosie does not have pain as such, just an agonising urge to urinate all the time. She finds this incredibly frustrating as there are no meds she can take for it. Thank you so much for your message... Just a few words really can make so much difference.

rugbychick1969 - thanks for suggesting D-Mannose. Rosie actually tried this back in November, and it does sound like a brilliant product. However, since we learnt that Rosie does not have a bacterial infection, she has stopped taking it. I do think it sounds like a brilliant way to get rid of bacterial cystitis, though, so I really, really hope it works for you. Other things I've read are good for getting rid of bacteria are uva ursi tincture, cantharis and pulsatilla (homeopathic remedies). Best of luck with it all.

VivaLeBeaver - that's really interesting. Do you think your IC is caused by bacteria? Have urine samples tested positive for bacteria? Rosie seemed to feel worse while taking antibiotics (they often made her sick), but we are keen to investigate the possibility that IC is caused by a long term, low grade infection.

Sunnydaisy - My heart goes out to you. Thank you so much for the lovely message. In Rosie's words, "It's nice to feel that I'm not completely alone". GOOD LUCK with the cystoscopy - I would be really interested to know how it goes. Rosie has not yet had a cystoscopy - she was seeing a couple of 'alternative' practitioners who told her it would make her worse. Her urologist also said the only thing he would offer her after the cystoscopy was a series of bladder instillations... Which, again, she was worried might make her worse. I think you're right - maybe we do need to consult another urologist. The cystoscopy is still very much on the cards for the future, but we wanted to give her body a bit of time to stabilise first (her white blood cell count is low and her emotional state is all over the place). Rosie says "I am keeping my fingers and toes crossed for you that the cystoscopy goes well and that you manage to get to the bottom of this horrible condition".

Thank you all so much again

www.facebook.com/groups/550445044998746/

The depth of knowledge from these guys is amazing. Join the group and ask for advice. They're in contact with a professor in London who specialises in IC and has all sorts of theories.

The general thought seems to be that for a lot of people it is bacteria. I think mine probably is, just don't know which bacteria. The abx I'm on are enough to suppress the symptoms but not enough to kill the bacteria.

Please, please, please go back to your gp and get referred to another urologist and have the tests they recommend. I say that as someone who (as per previous posts) has serious long standing kidney problems and cystitis that I take long term antibiotics for (and they do not always need to be for bacterial infections, even if there is no bacteria present they can help prevent any bacteria creeping in and can make her feel more comfortable just by changing the acidity of the urine).

Be extremely careful consulting alternative practitioners. I really mean that. Before I was treated at the hospital I went down the vega machine route, gluten free route, coeliac investigations and homeopathy. They all said various things. Nothing they gave me made any real difference.

Also perhaps your dd would benefit from being on a low dose of antidepressant? I'm not saying that to be patronising, I know how desperate she must feel, but antidepressants slow the physiology of the body down and tends to help with urinary and ibs symptoms. My dh takes one for ibs alone.

You must keep pushing the nhs for help. They can be reluctant to help at first but once you are in the system having all the tests they can be very good.

VivaLeBeaver - Rosie has joined the group and asked me to thank you so much for the link. It sounds very informative and useful, and we are going to try and get her a referral to a doctor who can grow a broth culture asap. THANK YOU.

Fairylea - thanks so much for the info. We are definitely going to ask for a referral to another urologist (or even a urogynecologist), but Rosie does not want to have any invasive procedures yet if not essential. But it will definitely be good to get a second opinion - I've heard some urologists can diagnose IC based on symptoms alone, without the dreaded cystoscopy. I've read in a couple of places that antidepressants can help, and would definitely consider this if it was what a GP/urologist thought was best. We are, of course, taking everything we hear from the 'alternative' medical community with a large spoonful of salt! Rosie is considering having several tests for candida, including a blood test, to see if they corroborate, as no one test/practitioner can be totally trusted. Anyway, thank you again, you have been so helpful.

I am sorry you are so miserable, Rosie.

Has your doctor tested you for chlamydia? It has almost identical symptoms. They should have screened you for it when you first presented with these problems, but thought I would ask just in case. It turns out I had it when my symptoms were at their worst. It is very easy to treat. I still get occasional flare ups, but nothing like before.

Even though you have already tried D Mannose, I would also suggest getting in touch with Sweet Cures as they are real experts and committed to helping women in your situation.

Best of luck.

DrinaDancesInParis - yes I have had a full STI screening as recommended by my urologist... If you'd told me a few months ago that I'd be praying I had chlamydia, I'd never have believed you, but I was! Sadly I tested negative for all STIs. Thank you so much for suggesting it, though, and I'm so glad you're feeling better now. I have 'liked' the Sweet Cures page on Facebook and will keep an eye on it as I really do think D-Mannose sounds like a fantastic product, but seeing as I do not seem to have an e-coli infection at the moment I'm not sure it's for me right now... But thank you, thank you, thank you for your help. Rosie xx

I'm glad she's found the FB group helpful. I keep meaning to do something about asking for a referral but I'm so busy at work I don't have the time to go to London and as the abx are helping I'm just not bothered at the moment.

I didn't find the d-mannose helped. I think looking at diet to some extent might help. A lot of people report worse symptoms when drinking tea and coffee and I've noticed I'm worse if I have a lot of tea.

Drink loads of water Rosie and good luck!

Thank you, everyone, I feel a lot calmer now than I did a few days ago. I'm researching the bacteria theory alongside candida and the affect of hormones. I'm on a super strict diet (no caffeine, alcohol, sugar, carbohydrates, dairy, gluten, but lots of organic green vegetables) and am sure you're right about caffeine being bad for bladders, VivaLeBeaver! "Fun" fact - I also read that green tea actually contains caffeine (was drinking that for a while which was probably not helping). Anyway, thank you and good luck to all of you. Rosie xx

Hi everyone
Just updating this thread to keep things fresh. My daughter, Rosie, is still pretty much the same, although sometimes she does have better days. She is keeping a chart and rates her symptoms according to how she is feeling, and perhaps this month is slightly better than last. But she says it's difficult to know as she forgets exactly what it was like to start with.
On a scale of 0-10, with 10 being the worst, she is generally around a 6. She still has the urgency, but not the pain thank goodness (she never had this symptom). So far this month perhaps her symptoms are averaging around a 5. If only we could all understand what's going on, it would be easier to bear.
Rosie is sticking rigidly to the anti-Candida diet together with anti-bacterial and anti-fungal meds plus probiotics. She is heartened by contacts made on the FB group and is hoping for a referral to the London specialist in the future - although she doesn't want to abandon her current treatment and one conflicts completely against the other.
If only we could all look into the future and see whether we are on the right track, life would be easier. So if any of you have a crystal ball, perhaps we could share it.
I read recently that parents are only as happy as their unhappiest child and I feel this is so true...

I had this for 2 years. I had repeated attacks of cystitis that became harder and harder to shift, until eventually it never went at all.

I had a bladder stretch, and was put on Elmiron. Neither of which did anything.

I tried homeopathy, accupuncture, herbalism everything, and nothing worked.

I then decided to have one last go to get rid with reflexology. Unbelievably this worked. 6 sessions and it was gone, after 2 years of misery

Orangeanddemons - WOW! I'm so pleased you found something that worked for you. Did you see a reflexologist who specialised in IC? (Is there such a thing?!) And do you have any idea how reflexology helps the bladder?

No, I have no idea how it helped, and no she wasn't a specialist. Whenever she touched the bit on my foot relating to the bladder I squealed in pain.

She was in Yorkshire if you are anywhere near...

I was also very cynical about the whole thing, but it did the trick.

Just to throw another idea into the pot, I went on a weekend to Belgium with a bad case of cystitis. Saw a pharmacist who asked what I had been prescribed (trimethoprim), and said "This is what we use" and handed me a pack called Monuril, also known as fosfomycin. It did the trick, has to be made into a drink and taken last thing at night so it can work on the bladder.
It is available in the UK, but might have to be ordered in from a hospital pharmacy. It seems well tested and tolerated.

Thanks Orangeanddemons, I'm so glad it helped you.

helzapoppin2 - am I right in thinking Monuril is another type of antibiotic? Very interesting as Trimethoprim seems to be ineffective for so many people these days. Not sure it would help Rosie as she doesn't seem to have a standard bacterial infection, but definitely something to bare in mind... Thank you.

To anyone that might be reading this thread in a similar situation, we have recently (spurred on by the brilliant Facebook book recommended by VivaLeBeaver) been investigating the theory that IC is an ongoing bacterial infection, but with the bacteria hidden in a biofilm so inaccessible by normal doses of antibiotics. There are currently two doctors in the UK who treat with long term antibiotics according to this theory, and lots of people on the group seem to have had great success. If anyone wants more information on this, feel free to PM me.

Does your DD have any signs of an autoimmune disease? You mentioned Raynaurds and IBS. Does she have any joint pain, hair loss, fatigue, weight gain or loss?

Caroline, my problem, thanks to the Belgian pharmacist, was nowhere near as long standing, but I was also told by the doctor there was no bacterial infection.
I threw in the suggestion as something else to try, yes, it's a broad spectrum antibiotic. I was flat out for a day after taking it, but it cleared up the problem, whereas I was on my second course of trimethoprim which wasn't doing anything.
Good luck to your daughter. It must be awful for her!

I have had something very like Rosie for the last 3 years. It is hell. I was discharged from urology while pregnant last year, but had a cystoscopy and biopsy done around 2 years ago, with normal results. I've tried vesicare and toviaz, neither of which did any good, but I've controlled around 80% of my symptoms by taking 20mg of amitriptiline daily. I had pain as well as frequency, but it eases both. Might be worth a try - I started on 5mg a day and gradually increased as it gave me terrible headaches on 10mg initially.

I've asked to join the Facebook group, so thanks to the person who posted the link

Hope you find something that works for you soon.