Hi I'm new and fed up

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Hi have just joined this forum to hopefully get some help and advice on how to deal with IC/PBS.

I am still having tests on my bladder but my consultant has pretty much said I have IC/PBS . I have been suffering with my bladder since I was 18 and now I'm 39. It has however got so much worse over the past few years and it's now controlling my life.

I feel like I'm going round in circles when speaking to doctor's . I know what causes mine the majority of the time but I don't know how to deal with this .

I would love to hear other people's stories as I feel so alone right now .

Thank you

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  • Posted

    Hi heather 1979

    I really feel for you, i'm fed up too but i think i may be on the course to getting better. I've had bladder pains since 19 and im 28 now. 

    I would really like to hear about your case, how it started, what the pains are like, what makes it better/worse. 

    Thank you

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    • Posted

      Hi Melissa where abouts are you based. I've been experiencing on off pain since 30. I'm now 33. What have you currently tried. I've been using d mannose which has helped keep infections at bay. I've also brought some marshmallow root from Amazon. And have brought a tens device. Are you taking pro biotics?

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    • Posted

      Hi Sandy, 

      I’m based in London. My problem all started with a UTI which I didn’t treat fats enough in which after I was in daily pain. I would have this horrible burning after I pee and have to drink water immediately other it would be excruciating. I would be prone to UTIs and get them about 3/4 times a year which once became a kidney infection. 

      I went to many urologists, had cystoscopys, biopsies, endless urine tests and everyone said I was fine. 

      I am now seeing Professor Malone Lee who is the only doctor who looked at my urine through a microscope and has diagnosed me, in non doctor terms I have an infection in my bladder wall which is not noticeable by normal urine tests.

      I am now being treated on a combination of antibiotics for over a year now and the improvement is crazy, I still have slight pains as it’s not 100% cured but I haven’t had a Uti since, and sex has been enjoyable. 

      I’m not taking pro biotics but I’ve been looking into it, what pro biotics have you been taking? 

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    • Posted

      Hi Melissa

      Before I started to d mannose I was getting UTI. But I've been pretty good for nearly 2 years. How can you see Professor Lee on the NHS? I'm based in South east London. I've got a consultation this week with Dr Payni who is a specialist in urology and gyc. I'm also hoping to see another urologist in August and will ask them to take a biopsy because they haven't done this yet. What medication has Professor Lee prescribed. Maybe we have similar issues. I'm taking a 5 strand pro biotic. It's really good. I've been taking it for 2 years and I can feel the improvement on my health. It's called pro cultures complex from Amazon. It's costs around 15 pounds but it's a 6 months supply. My partner has also started taking them because he could see the improve in me smile. I also take turmeric tablets with vit d.

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    • Posted

      Hi Sandy, 

      I’m not sure how you see him on the NHS, I think it might come with terms and conditions but I’m not 100%

      I’m now on Hyprex and Azyithromisn. I took Doxycycline for a short time to speed things up but am now back to the other two. I definitely feel a difference to how I used to feel and my doctor is sure this will cure me which I’m seriously hoping

      I will look into this pro biotic as I should take them considering how much medication I’m on. 

      What kind of symptoms do you have on a day to day basis? 

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  • Posted

    Heather you are not alone. I was diagnosed Feb 2017, but i think I was dealing with this alot longer. The reason i finally went to the urologist was because i was in pain and my family doctor said it was not a uti. When I was young I would have to go to the bathroom more than anybody else and i would blame it on what i was drinking. I never even heard of ic and was going crazy wondering what it was. Well to make a long story short I learned how to manage my pain with eating and drinking only what is bladder friendly. I also use a tens device when i goof up and the pain comes back. And yes it is easy to goof up. I don't wear tight pants and I dont lift heavy objects. You will learn what triggers the pain and want doesnt. Get a list of the food and drinks you can have and stick with it. Keep a journal of what you eat and drink and then if you have a problem than you can look back and see what it might have been. It sounds like alot to do and yes it is in the beginning but as time goes on it becomes more like normal to you.i hope this helps some and if you have anything else to ask please feel free to do so. 😎

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  • Posted

    Hi Heather I know exactly what your going through but to have had it since you were 18 is really awful. I have suffered with bladder problems and infections for 5.1/2 years now almost constantly and it's controlling my life as I am now wearing incontinent pads as my bladder goes into spasm and I can wee at any time. The trouble is that if I do wee immediately I end up in awful pain and don't know what to do with myself. I am sat typing this now for just that reason as the pain is stopping me from getting to sleep. I have to sit and wait for it to ease before going back to bed and I wouldn't wish it on my worse enemy and I have one. 

    I have had all the tests possible and also two dilation's of my bladder but still it goes on and on. I am now waiting to have botox as I have what they call a spasmodic bladder and hopefully the botox to the wall of my bladder will give me some relief. I have even tried self catheterising myself and which I will have to to initially after the botox as it numbs the bladder so I could have problems going to wee, but I've got to the stage I will try anything now and if this doesn't work then it will probably be a permanent catheter but it's got to be better that what I'm going through now.

    Sorry Heather I've gone on about my problems a bit but I hope you don't have to go through all this plus the antibiotics which I was on constantly for a long time. Have you tried D Mannose as it has good results but not in my case unfortunately as I can't take anything with cranberries in. 

    I hope you manage to get some relief soon and this doesn't control the rest of your adult life but if you have to self catheterise it really isn't that bad once you learn how to do it.

    Good Luck

     

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  • Posted

    Hey,

    I feel your pain! I’m at a similar stage of the process myself, I have a urologist and I’m awaiting a cystoscopy and I’m sure he said he’s filling my bladder with fluid too, to see what happens. The meeting was all a bit of a blur really but I’m just pleased the wheels are in motion! The urologist thinks all the evidence is pointing to IC after years of misdiagnosed ‘UTI’s’ and ‘kidney infections’.

     I’m writing this after being up since 4.30am sitting in a hot bath due to being in agony with a flare up, ouch. I’ve been on and off with it since Thursday, and have had little relief apart from when I’ve had tramadol.  I personally have never noticed dietary triggers but after yet another night of sitting up in agony unable to get any sleep I’m willing to try anything at all to bring some relief, even if it just mentally makes me feel a bit better! 

     What do you guys find eases your symptoms? I’m struggling with the urge to push out urine at the minute (which I’ve read is super bad for us!) so I’m finding the hot bath is relaxing my muscles. Has anyone tried the bicarbonate of soda in the bath? I always dismissed the ‘home rememdies’ and preferred the quick relief of pain killers but at the minute nothing is consistently bringing the relief sad

     Lots of warm wishes and love to us all, this is the worst sad xxx

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    • Posted

      Hi sunny where abouts are you based. What s helped me is d mannose. I take pro biotics for the gut every morning and drink around 5 litres of water a day. I have a alkaline diet...stay away from all acidic forming foods. I've also brought some marshmallow root tablets as they help with the burn. I'm just waiting for them to arrive.

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    • Posted

      Hey sandy thanks for your response. I’m based in north east UK. I’ve heard D mannose is good, I’ll get some. I drink loads of water (4L a day), follow a clean diet and exercise 4/5 times a week. Overall I’m a really healthy fit person, although I don’t feel it at the moment! I haven’t been able to gym in over a week due to the flare up and when I’m in the midst the idea of walking makes me feel sick 🤮. I took 2 tramadol at 8am and managed to get some sleep until about 11.30, just sitting with my heat pack on at the moment sipping a chamomile tea enjoying the relief I have at the moment. 

       Do you also get IBS? My urologist said it’s really common alongside IC. Sometimes I suffer really badly with it but at the moment it’s the opposite problem due to the tramadol! xx

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    • Posted

      Hi Sunny I use to get IBS symptoms but I started to take pro culture biotics that support the gut. I've been taking it for 2 years now and I haven't had symptoms of IBS. Do you take any pro biotics. I'm also in UK. South East London. My flare has been going on for 10 days. I haven't been to the gym for 2 weeks. I feel like I'm just gaining weight. I'm also pretty healthy and have a really good diet. Have you cut out all acidic foods? Even some veg.

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    • Posted

      Hi all, I have been up until the early hours the past 3 night and I know I'm in for another one tonight the way my bladder is behaving at the moment. I tried not to take any painkillers last night because they are making me so constipated but I had to give in eventually and take some co-codamol which usually helps and I can get off to sleep then. I can't take Tramadol as I was given them after knee surgery and they made me feel quite ill, so I use as I said co-codamol.

      I also take pro-biotics which I buy in capsule form from Holland and Barrett and I have been taking these for a few years now. Recently I decided my body needed a break from them as the system gets used to them and they don't do their job correctly then. However I will be starting them again next week and hopefully they may help me a bit until I have the botox treatment. It amazes me how many of us ladies suffer from this condition and nightmare, and I think the time they take to work out our problems is ridiculous as I have been through so many processes starting with pelvic floor exercises then the cleansing after each motion etc and on it goes, but please all you ladies who are suffering badly keep nagging your doctor for a referral to a Urologist if you don't already have one. 

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    • Posted

      Hi all, 

       It’s so sad when you read through these threads and are forced to remember that it’s one of the least understood chronic conditions around, and what we all go through on a daily basis really is horrendous! I personally have sought alot of comfort today in reading through these responses & feeling like there are other people out there experiencing the same thing, as this can be quite a lonely condition (Especially when you’re  seeing the wee small hours - literally!!!)

       I’m going to try the probiotics as it sounds like you guys have experienced some positive results from them. I got some marshmallow root today in capsule form from holland And Barrett, and I’m currently in a pre-bed time Epsom salt bath with a peppermint tea and tramadol ready to take, as once again the evil burn is stirring down below and my bladder wall feels like it has 10000 flaming pitchforks scraping down the side of it!!! Lovely! This flare just doesn’t seem to be letting up and I’m trying to avoid another 3.30am wake up call...!

       + side my urine doesn’t have any infection in it so at least that’s not something else to contend with!!

      Lots of love all xxxx 

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    • Posted

      Hey, poor you, it’s reallt awful!! Hope you’re having a pain free day. My doctor and urologist both think it’s Interstitial Cystitis. I’m awaiting a cystoscopy and hyperdistention in the next few weeks/months which should hopefully clarify the diagnosis! X
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    • Posted

      Thankfully today I have been almost pain free but being so careful when I go to the loo as I get awful pain if I go soon as I have to go through a ritual before I can actually go to the loo. Hopefully it will be a pain free night for me but I do sympathise with you all especially the younger ones among you as I am 73 now and although it doesn't make the pain any easier to bare at least I wasn't affected when I was younger with this horrendous condition. 

      I meant to say that cinnamon is another good remedy but it's not that pleasant to take but it does work for a really bad dose of ic. I also forgot to mention that avoiding caffeine is something else to consider as my bladder nurse and consultant advised me to do this, so my husband and I drink decaf tea now and only have one coffee a day. All these things do help with the urgency to wee so I hope it helps at least one of you to cope with your condition a little easier.

      Best wishes

      Gill

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    • Posted

      Hi Gill,

      Thanks for the tips, ill definitely give cinnamon a go! I’ve cut out caffeine completely and I’m just sticking with peppermint or chamomile tea, at least until this flare clears up. On day 8 now and getting very fed up! I don’t think it’s as angry and bad as it was on Monday evening but it’s the horrible stinging in my urethral area and inside that is irritating the life out of me! I woke up at 3am in bad pain and couldn’t be bothered with another all nighter as I’m so shattered so I just took some tramadol and hoped for the best. Gonna head back to my docs today and double check that there’s no infection. 

       Hope everyone’s well xxxx

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    • Posted

      Hi Sunnyday,

      I'm sure your not feeling like a sunny day with this horrible infection you have again. I have to be careful I don't go to the loo at the first sign or message from my brain as that's when I get the awful pain and soreness down below. Some nights I have to have a hot water bottle to put between my legs, not a good idea this weather though. I alto take painkillers but I can't take tramadol as they make me feel really sick and poorly, so I have to take co-codamol if it's really bad as I can't get off to sleep without them. Of course they then cause constipation which is another thing I have to watch, in fact i have started taking 2 senakot tablets each night to make sure I go to the toilet daily as this can also cause me problems with my waterworks. 

      All these things are worth trying but I do hope you get some relief soon.

      Best wishes

      Gill xx

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