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interstial cystitis

(8 Posts)
labazs Thu 20-Sep-18 16:42:58

please can anyone tell me how the heck i can live with this? i went through hell with it about 10 years ago and it seemed to go. now it is back with a vengence. dr has put me on tablets but nothing seems to help i went through the having things injected into my bladder before but it never did much good.i have been helping a friend sort a shop out this week and it could lead to me running a similar shop for them which is a dream come true but i dont know how i can cope with my bladder. every day i have come home in pain and had slight accidents; it doesnt help the toilet is vile where i am at the moment but in the new place toilet will be for me alone so it will be scrubbed within an inch of its life! i dont want to be wearing incontinence pants and pads i am only 54 i cant sleep with my partner for the pain which is not fair as we have only been together two years and love each other dearly. please can anyone who has lived with this horrible condition give me any advice i did read that you can take antihistamines to help but dont want to be doped up to the eyeballs

JudyJudy12 Thu 20-Sep-18 17:42:27

Sounds absolutely dreadful. I think the only help will be medics, but it sounds like you have had all the treatments available. I had to look this up as I had not heard of it, does seem that there is not a cure that fits all with lots of different causes and treatments.
So sorry for you.

clementine Sat 22-Sep-18 18:57:19

So sorry you are suffering from this . It seems it's the same diagnosis they use for IBS, in other words, when they don't know what else is wrong they say you have IC. I would recommend you check out the bladder and bowel foundation, they have a brilliant website and for a small fee you can become a member and speak to a trained professional who will give advice re ongoing management . Another helpful website is Menopause Matters. If you go to their forum and click on " other health issues" there is a thread called The Burning Club, full of advice and suggestions . Hope this helps.

BlueBelle Sat 22-Sep-18 19:29:19

Oh my word you poor lady I can really really feel for you
I too had to google it as I d never heard of it I had about 30 years of fairly regular cystitis but never anything that didn’t react to antibiotics it almost all stopped after the menopause I can imagine how terrible it must be for it to be constant you must feel at the end of your tether
I think joining a support group etc should be helpful Can hypnosis help with pain management ?
I do sincerely hope you can find some relief

Pennyrae65 Sun 21-Apr-19 12:54:13

Hi here- am a cystitis sufferer and from time to time no infection shows. This time I was given antibiotics and after 3 water tests coming back showing blood in my water the doctor has referred me for a cystoscopy and scan- me being me I beside myself with worry and would welcome anyone that has had this experience please! Thank you so much xx

Seizetheafternoon Fri 26-Apr-19 21:33:27

I have had severe uti symptoms for over 5 years. Most of the time dipstick tests showed blood and sometimes leukocytes but lab tests were always normal. Under sufferance I was given course after course of antibiotics only for the symptoms to spring back up a few weeks later. I was given a low dose course of antibiotics for a year which helped initially and then made no difference The hospital urology dept scanned and did a rigid cystoscopy under GA and diagnosed something called cystitis cystica. All they could offer were bladder installations which did nothing to help. I was so desperate as my quality of life was so bad.

I found about a consultant who deals solely with chronic uti and paid to see him privately. He examines a fresh urine sample under a microscope and measures the number of white cells and epithelial cells. He said I have a severe infection and started me off on a long course of antibiotics. He has researched and treated chronic uti for 37 years and is an emeritus professor from University College of London.

He absolutely despairs at how badly women with uti symptoms are served and says the dipstick and lab tests are totally inaccurate in many cases. He doubts the existence of interstitial cystitis as virtually every woman who comes to him with that diagnosis has a chronic infection which is resulting in inflammation. Because their urinanalysis is often deemed to be normal it’s diagnosed as IC.

He said what I have cystitis cystica isn’t a condition in and of itself but just what a severely infected bladder looks like when it’s not probably treated. I gradually feel like I’m getting my life back after years of hell. His name if you feel you’re getting nowhere and are getting desperate, is Professor James Malone-Lee.

Rowantree Sun 05-May-19 01:31:45

I had decades of cystitis and tried everything I could think of and it was only beginning to take D-Mannose regularly that made a dramatic difference. It's not a drug - it's a simple sugar and taking it seems to prevent e-coli bacteria from sticking to the bladder wall. You have to spend time playing with the doseage to find something that works for you but you can't overdose on it and there is no research i've found indicating that it isn't safe to take.
You can get it online. It's expensive but I recognised I'd need to take it longterm so bought in bulk. Sachets of powder are best, without any additives. Follow instructions on dose variations and give it a few months to adjust. I found that taking a dose twice daily - just before bed and with breakfast - sorted me out and I rarely had an attack. If i did, then I upped the dose and switched to dosage advice for acute infection till it was gone. Rarely if it didn't help I'd have to resort to an antibiotic but I'm happy to say that really was rare.
I have now found that I don't need to take it regularly. Over time it reduces the propensity for infection. It doesn't kill bacteria; it attracts them and you just wee them out.
I never thought anything would help at one time and I was utterly miserable. Now I feel so much better.
I should also add that I take good hygiene precautions too and often wash after bowel movements if it's possible. I ensure I am well hydrated too.

Worth a try!

Sparklefizz Sun 05-May-19 08:56:33

Yes Rowantree, I agree totally with everything you say.

D-Mannose is brilliant stuff. I always keep some in the cupboard. It worked for me after 3 courses of antibiotics did nothing. A friend's husband has to have a catheter and kept getting infections and being prescribed antibiotics. I suggested D-Mannose and it has changed his life.