I'm new here, just want to pass on some experiences.

I got diagnosed in 2003 after 5 years of severe bladder symptoms. I was taking cimetidine and hydroxyzine, cimetidine for 13 years. Cimetidine affects the absorption of nutrients. I was diagnosed with Low vitamin B12 at this time, later on iron, folate, and vitamin D3.

My bladder is so sensitive to fruit flavoured vitamins, especially cherry flavoured Methylcobalamin ( vit B12) I have found Natural Factors dissolving Methylcobalamin doesn't affect my bladder. I started injecting Vit B12 3 years ago. My GP gave me hydrocobalamin, another form of B12, I had over a week of bladder pain and spasms. I traced it to the acetic acid in the injection. I find methylcobalamin you inject, doesn't hurt my bladder.

A year ago I told my GP I wanted to stop cimetidine, and treble the dose of hydroxyzine to 75 mg. This has been like a miracle for me, I can eat a wider range of foods, even some ripe cherries, which would have been unheard of a year ago.

Is anyone also diagnosed with under active thyroid too, or fibromyalgia?

Does anyone have a child diagnosed with IC too? My eldest daughter was also diagnosed 2 years ago, and she also has under active thyroid like me. Genetics?

[JMN2017]

Hi Hidden

I've just come across this forum. I frequent the vit B12 / PA forum and the Thyroid forum. I've read your post with interest.

I, too, have Irritable/Over active bladder and have had for a number of years. Managed by Solifenacin tabs daily which certainly do help. I also have under active thyroid, again for many years and take Levithyroxine daily

Recently, I've discovered that my B12 has been low (just out of range), Folate high (out of range) and already taking significant dose of Vit D since found to be deficient several years ago and had a short course of high dose tabs.

After lots of research re B12, I considered I was deficient whish would account for many of my symptoms. However, my GP is adamant I am not deficient - coz all results within ranges!!! Well, to me, my results paint a picture. Oh, I also managed to get Holocysteine test which was close to top of the range (and I discovered that treatment for high Holocysteine is Folate!!!) So, as my Folate is already high, I wonder what my Holocysteine might have been ... if I hadn't 'been eating too many cabbages' (the reason my GP gave for high Folate!!!)

So, as he wasn't prepared to accept I could be deficient and wouldn't even prescribe a trial of injections (I take Metformin and Ranitidine - both reputedly potentially causing absorption issues) so, as I felt so rotton and felt my life passing me by, I started self injecting about 3 months ago. I do feel my bladder issues have improved although not sufficiently to try without the Solifenacin.

I've noticed that fruit squashes irritate my bladder unfortunately - I hate water I stopped all caffeinated drinks years ago (to try to improve sleep issues, lack of) so I'm very interested in your experiences re fruit contents. I wonder what it is in these things that are an irritant???

Julie

[Hidden in reply to JMN2017]

Hello Julie, excuse the delay in replying.

Have you had a cystoscopy by a knowledgeable urologist? That helped my diagnosis of interstitial cystitis.

I found out from other sites that if your B12 is below 500 it can cause nerve damage. We should be aiming for at least 900, the new guidelines say you should be treated on symptoms. I learned from the thyroid site that with under active thyroid people tend to be deficient in vitamin D3, iron, folate, B12 also. It does seem to follow a pattern.

Anything acidic causes bladder pain, so for me that's most fruits except for sweet apples and pears, when first diagnosed I couldn't tolerate apples. I find fruit flavouring in supplements really bad, also non acid vitamin C. I follow the IC diet that excludes acidic food and drink, in order to stay comfortable.

I not keen on drinking water but it's mostly all I can tolerate. I drank nothing but Evian for 10 years, then discovered red bush tea which makes a nice hot drink, it doesn't contain caffeine or acid. This is all about staying off from things that irritate your bladder.

[JMN2017]

Hi again Hidden

Thanks for your response. I'm sorry for taking so long to reply - where does the time go...? Also, I wanted to check something out before responding.

You mentioned you couldn't tolerate fruit flavourings etc which then made me wonder if my drinking fruit squashes was perhaps the reason my bladder had,more recently, become more 'irritable'. So, I've stopped drinking squashes and bladder has improved again. I would never have associated fruit squash with increased irritability. I don't enjoy drinking water particularly but do enjoy tea and coffee (decaff, of course) but when I'm tired, I just don't have the energy to get up to make it

I do feel that having Vit B12 injections (self-injecting and buying s GP won't agree I'm deficient ) several things, including the bladder irritability, have improved. I am now trying to 'train' my brain to ignore initial signals to wee - and it's working

Instead of drinking squash, I've started to drink (cheap, supermarket) Tonic water (Diet, because diabetic) due to continuing night cramps and that doesn't seem to affect my bladder, it would seem. It has certainly been helping my night cramps, though, I'm pleased to say

So, thanks for your tips - they've really helped me

Hope you're doing OK

[Hidden in reply to JMN2017]

Hi JMN, water is by far your best drink, I know you don't enjoy it but you do get used to it! Milk I can tolerate too, and red bush tea is no problem, I was told by a doctor years ago to never drink carbonated drinks as they're more acidic. I can have one cup of coffee it it's made with milk, normal tea really hurts my bladder, but a lighter one Earl Grey I have as a treat when I'm out.

I had leg cramps until I was on sufficient thyroid medication, and Vitamin B12 injections. I have also found taking magnesium citrate helps my muscles. Epsom salts in a foot bath is really soothing too.

I'm really glad you've been improving, were you drinking sugar free squash? Artificial sweeteners aren't good for our bladders.

I had some success with bladder training, if you can wait a minute extra and try and build it up, it does help a lot. Getting rid of everything that irritates your bladder is the key, and keeping so hydrated that your urine is clear and almost colourless.

I have cut all processed food out of my diet, now gone gluten free and cut out grains, and I've lost 14 pounds in 6 weeks. Eating an avocado and apple for breakfast, my skin has really improved and my bladder is happy. I was eating plain porridge every day, but if I didn't drink enough water I got constipated. I have anal fissures so I've had to change a lot in my diet.

Keep up the good work!!

[dramatic]

Hi I can’t help with advice but re your daughter I think my daughter (and I hope you may be able advising us ) may have it -waiting for an appointment with the urologist. She has had chronic cystitis for about a year but with 1 exception no infections. We are really struggling to manage her pain especially during flare ups. She has been prescribed gabapentin with some effect alongside paracetamol and ibuprofen but it is not really that effective and we don’t know what to try next. I don’t know how long we will have to wait for an appointment and she is getting very tense now when needing a wee. What has been suggested to treat your daughter, do you have any tips and how easy was diagnosis? Thank you

[Hidden in reply to dramatic]

Hi dramatic, I asked my daughter's urologist to put her on hydroxyzine, as it has been a wonder drug for me for many years now. She's an adult and takes 2x25 mg tablets at night. Within a few weeks she got her life back. I take 3x25mg tablets of hydroxyzine at night.

I used tramadol for pain for many years, but I must say nothing truly gets rid of the pain, you just get sedation, which sometimes is very welcome during a flare in symptoms. I though follow the interstitial cystitis diet. My daughter is very hard to persuade and she's still drinking wine and coffee etc etc. She has adopted Evian though after a lot of persuasion, and says she feels better for drinking this water rather than tap water. You have to keep yourself very hydrated so your pee is almost colourless.

Gabapentin isn't that good at relieving pain, it takes a long time to work in my experience too, I was once left waiting over 5 hours to get any relief. Since I have had painful anal fissures my doctor prescribed tramadol and comparing the 2 it was obvious that tramadol worked quicker and gave more pain relief, I do find it constipating though so had to give up. When I took it for the first few years after being diagnosed I gave up because of itching and nausea, I was taking it pretty much all the time though. One good thing with gabapentin is it can reduce the times you need the toilet, especially at night so you can get more sleep.

I found ibuprofen irritates my bladder, but this is a very individual thing.

[Hidden]

Sorry dramatic, I forgot this bit, it took my daughter 3 years of being messed about by her urologist, who clearly didn't know much about IC. In the end I went to her appointment, took info and also how useful hydroxyzine is, and by his expression, he didn't know any of this. So that at least got her on hydroxyzine. It's very important to find an urologist who knows about IC and how to treat it, many don't. I researched an urologist myself 60 miles away but it was the best thing I ever did. I had already gone 5 years without a diagnosis and was pretty much housebound and in agony. I had a cystoscopy that showed inflammation on the bladder wall, and from biopsies a real increase in mast cells, this is what diagnosed me. My daughter had a cystoscopy which showed blister type changes on her bladder wall, but her doctor forgot to do biopsies and I was furious. But by symptoms now a lot of people are getting diagnosed, if you have a knowledgeable urologist.

[dramatic]

Thank you for your reply that's really helpful. We will look into those drugs and we will definitely ensure she has a cystoscopy ! It's very hard because she's young and I think they don't believe them. She's 21.

[skybluepink]

Hi,

Just seen your post I am now 72 YRS from a family of Pharmacists the females with low thyroids and me with CFS/ fibro were the trigger points re cardiac arrest caused by retention & non targetting of antibiotics .It can also be a sympyton of urosepsis This is still going on even though in my 20's ghad Research for the utis acute 3 weekly as had to wait for urgent assistance often 3-4 hrs .Research Royal Free 1969 saw a spina bifida, abnormal EEG ,fatty liver , scarred kidneys then neurogenic bladder one ureter too many .They gave me the Notes back I wonder why?

I cannot tolerate catheterisation due to primary cellulitus [ one of first on penicillin & pill] I know now 2 years ago this is primary lipo-lymphoedema stage 2 [ obesity?} for which no treatment .This is even though on both sides of the family are numerous cancer/heart/hormonal/autoimmune problems .However suspect if hadn't watched how monitored would not be here today . I will probably go like my mother with MID/Alzheimers - Function & cognition gone as the Function has been ignored since 1996 & still is as probably microvascular.This is very worrying when single solo & will need Emergency responders not allowed .