Treatments and medicines:IC awareness day28

So I had many antibiotics before diagnosis. I think the initial ones cleared an initial ecoli UTI infection; the rest merely caused immune system to weaken further and generally fucked up my system. Then I had a rigid cystoscopy with hydrodistension. This did nothing to help my symptoms - they worsened while I was healing from it, then were the same as before. But it was diagnostic as mast cells and chronic inflammation found and so IC diagnosed definitively instead of 'urethral syndrome' or 'it's in your head' etc....

Since then I have tried:
Conventional medicine: 1. Nortriptyline (which worked a bit initially, but then stopped affecting my bladder just making me sluggish and gain weight and everything dried out... so tried doubling it but the side effects just doubled, so stopped... 2. Hydroxyzine - I thought this had an effect at the beginning but then again stopped working at all and just made me so sleepy and also caused retention. 3. PAINKILLERS - without which I couldn't function - I've tried. I'm currently on Tramadol and Dihydrocodeine, which work out ok if I take Tramadol in the day and DH in the evening. Sometimes I use co-codamol when pain is less, or supplement the strong ones with paracetemol. My pain is a 5 out of 10 to an 8 out of 10 ON these. Without them, I can barely move. I still have days of intense pain even on this medication. I have also tried Fentanyl and Buphrenorphine patches. Both avoided the morning agony but both had side effects and the Fentanyl kept slipping off - but I was in much less pain- may go back on one of these soon. 4. Diazepam - for my Pelvic Floor Dysfunction - my muscles are so tight that it's hard to relax to urinate, so the diazepam helps with this. It also helps me feel less panicky and desperate. 5. Have put in special application for Elmiron through my urology consultant - STILL waiting to hear.

Alternative medicine: Reflexology / aromatherapy - lovely , but ain't gonna cure my IC. Currently having acupuncture, the jury is out on this one. I have had a few more good days lately so you never know, it may be doing something. Need 6 to 8 sessions before can know.

Diet: no caffeine (at all), no alcohol (at all), and much less sugar or gluten. Mostly following the IC diet though I do what works for me. Absolutely no citrus or spice. Artificial sweeteners make me in bad pain. Sparkling water is fine for me tho, as is vanilla ice cream. People do all kinds of things with diet - I don't think we should judge or be prescriptive - but there is no doubt coffee, wine and tomatoes are doing you no favours.

Lifestyle: I'm a busy single mum BUT i spent more time resting now. I mean, lying still and either reading, or thinking, or staring into space. I have lots of hot baths. I use heat patches and cold packs. I adapt. I expect less of others and myself. I try to make this as easy on the kids as possible, which isn't easy at all. I TRY to think positive, which some days is a lot easier than others, but if anyone tries to tell me I can 'affirm' my way to health, I think I will throw Louise Hay's book at them. My acupuncturist says there is a definitive link between IC and anger. This is interesting. I certainly am angry with my ex, as he was responsible for making me ill in the first place which then led to my IC. Dropping this anger is v hard. She says I won't get better til I do. This then makes me angry with her lol :) xxx

Supplements: Probiotics. Have tried some aloe vera, tho it wasn't pure enough, so want to order the Desert Harvest one but currently broke. Would be interested in Cystoprotek as haven't yet tried. Eat more Omega 3 and 6 and I take vitamins sometimes.

Do whatever works for you. Be your own best friend and your own advocate. Nobody will fight this battle for you.