Anyone Suffering With Interstitial cystitis ?

IC isn't a diagnosis ....its a symptom ....I got fobbed off as having IC .... I got a private urine and vagina screening .....I had klebisella and thrush .....both gave symptoms.... neither showed on nhs testing...the thrush was a rare strain....I went private ....had a month of antibiotics..... non routine thrush treatment and all pain disappeared...now on twice weekly vaginal estrogen ( not systemic)... twice daily hiprex ....once weekly itraconazole ( to keep any thrush away) ....daily vit c ( keeps urine acidic for hiprex to work better)...daily antihistamine

nandad

I know it’s been a few weeks since you posted OP so hope you see this.

Long story short- have you tried antihistamines? I realised that my symptoms had more or less cleared up when I came back from a holiday where I took antihistamines for 3 weeks due to insect bites. There is a Facebook group where others have also had positive results.

Thanks for your reply. I will look into antihistamines. I'm on so much medication at the minute for
other issues that I'm rattling

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I know it’s been a few weeks since you posted OP so hope you see this.

Long story short- have you tried antihistamines? I realised that my symptoms had more or less cleared up when I came back from a holiday where I took antihistamines for 3 weeks due to insect bites. There is a Facebook group where others have also had positive results.

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Ohmother as no one has responded to your question, I have looked at the NHS website. Lots of information about the surgery and recovery time etc. It seems to be around four weeks before you can safely drive. Probably six weeks before returning to work, depending on the type of work. Wishing you well.

Rectocele recovery time? When would I be able to drive and return to work? Approx of course.

It sounds as though you are as badly affected as I was. Like you the instillations caused infection. I too am taking Edoxoban about 12 months now but not agreeing with me at all. I was on Warfarin for 20 odd years before. I do wonder if this condition and its treatments are affected by whatever else is going on in the body. I do hope an answer can be found for you. Try the Cimetidine and the Mirabegron but I have to say my Dr did say that Cardiologists do not like their patients on it which is why I am trying to wean off it gradually but if it’s helped so much the better.

Henal

Nanato3
I am the person that Aldom spoke about yesterday. Apart from all the medication mentioned I had also had two courses of instillations, sadly not worked for me but it’s something you might mention to the hospital. I do not have coffee or tea or fruit juices or anything fizzy ever. I only drink bottled water, nothing else. I eat little meat, chicken or fish. No citrus fruits and only one type of melon and grapes, apples and bananas and prunes. Forgive me being blunt but has it been mentioned that you may have a prolapse.? I have one which has been disputed by some consultants, but I think they just do not want to address the problem! . I also find that if the gut is not working properly the situation is a lot worse. My final consultant put me on all the drugs mentioned because he said after 2 years of suffering he was going to throw everything at the problem. I am gradually weaning myself off some of them but when I asked him which were the most important ones his answer was the pessaries of HRT and the Hippex. All the consultants and nurses I saw all say HRT in small doses is vital. Some went as far to say that every woman should be on HRT right from the menopause onwards to ward off this dreadful condition. I do know well the pain you are in. Night times were a time to dread and I was exhausted with the lack of sleep. Try everything, in the end you will find something that will help you.

Henal, Thank you so much for your reply. I have tried HRT on different occasions and it always makes me bleed , had to stop it has am on blood thinners which made it worse .
Also tried Hippex but my urine is already very acidic , it gave me more pain . I've also had installations which gave me an infection every time , they did seem to help until the infections flared up . Nurse said I had to stop them . I'm waiting for an appointment to see a Urogyaenacologist. I've seen one before some years ago but he couldn't recommend any other treatment so stopped seeing me . Hope you continue to improve, I will look into maybe having a prolapse.

Yes finally I did see one. I did find it was not a lot more knowledge imparted than I had already known of because I had seen such a wide variety of experts!

Up thread, Jane112 mentioned seeing a Urogyaenacologtst.
Henal I seem to remember that you have been examined by a urogyaenacoligyst? Was this helpful in your case?

Nanato3
I am the person that Aldom spoke about yesterday. Apart from all the medication mentioned I had also had two courses of instillations, sadly not worked for me but it’s something you might mention to the hospital. I do not have coffee or tea or fruit juices or anything fizzy ever. I only drink bottled water, nothing else. I eat little meat, chicken or fish. No citrus fruits and only one type of melon and grapes, apples and bananas and prunes. Forgive me being blunt but has it been mentioned that you may have a prolapse.? I have one which has been disputed by some consultants, but I think they just do not want to address the problem! . I also find that if the gut is not working properly the situation is a lot worse. My final consultant put me on all the drugs mentioned because he said after 2 years of suffering he was going to throw everything at the problem. I am gradually weaning myself off some of them but when I asked him which were the most important ones his answer was the pessaries of HRT and the Hippex. All the consultants and nurses I saw all say HRT in small doses is vital. Some went as far to say that every woman should be on HRT right from the menopause onwards to ward off this dreadful condition. I do know well the pain you are in. Night times were a time to dread and I was exhausted with the lack of sleep. Try everything, in the end you will find something that will help you.

I was incorrectly diagnosed with interstitial cystitis Nanato3 and have received much support and information on a website “Live UTI Free* which I have mentioned on another thread. I do in fact have chronic recurrent UTIs and have been directed to specialist treatment for this.

The people are very helpful at Waterfall D-Mannose because one of the directors of the company was a sufferer. I would phone and ask for advice.

Chattery

Catterygirl,
can I ask what dose of D-Mannose you take?Ive been taking it for a few months and haven’t found it helped but maybe the dose is too low🤔I’m taking 500 ml a day. I get mixed answers when I search on line.

I suffered for years but my GP, never get to see the same one as a training hospital. He recommended D-Manoose about 10 years ago. Happy to report, never had another bout of cystitis since then. It isn’t available on the NHS but well worth paying for in my case.

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Sorry nothing is working to ease your pain, it is a most unbearable pain. Just another thought, urogyaenacologists are generally better at helping women with bladder problems than urologists so if you're not already seeing one and it's an option for you to be referred to one it might be worth requesting that. I hope you get some relief.

Thanks for all your replies. I've tried everything mentioned and either it doesn't help or the side effects are too bad. Being referred back to the hospital but not expecting any help .
It's got to the stage where everything I eat gives me awful pain .. It's a terrible condition, I wouldn't wish it on anyone.

All under control very similar story to Jane112.
Doctor was useless, I did my own research, D-Mannose is brilliant.
I have stopped caffeine, citrus fruits, raw tomatoes, spirits and various other foods.
I can now do a 4hr car journey without a stop, previously 45 minutes was a stretch.

Yes I have this but thankfully managing to keep flare ups at bay. Best advice I got was from a dietician who advised me on foods to avoid or reduce, mostly acidic foods, chocolate (sorry!) tomatoes, citrus fruits etc. There is an app called the ICN Foodlist advising which foods are ok and which to avoid, it's definitely worth having. It's very much trial and error as everyone is different but it's worth the effort to avoid pain. My consultant prescribed Vagifem which has been great. The other thing I have found helpful is D Mannose a supplement that apparently stops E Coli from sticking to the lining of your bladder but please check with your GP as it may not be suitable for everyone, my consultant's view was there haven't been any proper trials on the effectiveness of D Mannose but many people say it helps so it's worth a try if there are no other contraindications. Good luck.

Nanato3 not my experience, but my oldest friend (now 82). For over two years she suffered horribly with this bladder condition. Pain from inflammation of her bladder. Up to pass urine a dozen times a night. Always needing to know where the public lavatories are situated.
She has seen many health professionals including various consultants. In the end, going privately got the results she was hoping for. She's back with the NHS now and since last December (23) these are the drugs she is taking :
Hippex, Amitryptyline, Mirabegron, Cimatidene, HRT. In addition, de-mannose and Jude.
My friend will provide more details if you wish.
All the best, I know it's pretty dreadful living with this condition.