Awful pain, fullness, pain above pubic bone

I really MUST thank you for your insight and support right now. Being a newbie, and struggling for 6 weeks, has been awful. Yesterday I drank and OJ and coffee~ I didn't know better. I Iive in NY, so hopefully there will be meds to help me get through this. How often do flares occur? This being the first and probably the worst has got me really upset. I spoke to my husband about this and it does seem so ridiculous when you try to explain it. Its NO joke! Its the throbbing and pain and inability to void thats got me so agitated. Many this episode is a one off, never to reoccur again?

Are there any warning signs that a flare is coming, or does it just strike randomly? Thank you so much for replying. I am so new to all this, and terrified. Obviously Im really under stress about this. Im tracking my urinating and pain for the uro/gyno tomo. My mom has urinary incontinence, Im wondering if my situation is somehow connected? Again THANK YOU for being a source of comfort and understanding for me. 

Hi, this reply is a bit late as there appeared to be a problem with this site but it’s working again now. I really hope you get on ok at your appointment today.  I don’t think your mum’s condition bears any relation to yours.  As for flares, mine appear to be fairly random.  I can be fine one minute, go for a pee and come out thinking uh oh - it’s started again!  However they may not be random if I kept a diary - bit too lazy to do that to be honest! I do know that if, for example, I was to drink a glass of orange juice I’d certainly know about it later! My urologist said I’d know within a few hours (not days) if something I’d eaten or drunk had upset my bladder.  I’m fine with McDonald’s incidentally! But I don’t drink fizzy drinks - mainly because of the sweeteners.  I do a lot of research on IC and I’m coming around to the conclusion that apart from the things known to cause flares, like citrus, caffeine, chocolate (I’m ok with that too!) Sugar is a big offender so I’m trying to cut it out of my diet altogether which is easier said than done but I already feel there I have more energy.  I’m having PTNS for my bladder - maybe you could ask your urogynaecologist about that - I’m in the UK so not sure what treatments are available where you are.  Try not to get too stressed and worried as that won’t help either - hard I know! But once you’ve a diagnosis and a sympathetic health care provider you can move forward with your own research, help from other sufferers etc. And become your own expert.  Wishing you well. 

Hi I did go to the uro/gyn today and yes I have IC. I also need to go on vaginal estrogen due to aging and symptoms. I am feeling a bit better since I wrote this initial post. The bladder IS in spasm. Im taking new meds and hopefully I will feel better soon. Thank you kindly for responding to me. Much appreciated.

Hi, I’m thrilled that your  urogynaecologist has prescribed you estrogen!  It’s a rare doctor that understands the connection between bladder probs and low estrogen.   I’m sorry I didn’t mention that before (brain fog!) The bottom bit of the bladder is made up of the same tissue that lines the woman and so both are estrogen dependent.  I also use it in the form of vagifem pessaries and it does make a difference - especially when I first started using them.  I’m hoping it will ease the spasms for you.  I still have IC and horrible flares but not as bad as before I took the estrogen.  I needed it systemically as well as I had a very early menopause and had hardly any estrogen left!  It’s been a life saver for me.  I’m so glad you found such a clued up doctor - sorry I didn’t mention this before!! So long ago I’d forgotten all about it! Hope you find some relief of at least some of your symptoms soon - it may take a while to kick in but keep going! 

I wasn't thrilled to hear estrogen, but he says I won't get cancer. As a newbie this IC is ALOT to manage-LOL. I do wonder how this all started 6 weeks ago out of the blue. Not fun and my husband has surgery tomo for a total hip replacement. They advise to stay calm, no stress. This is obviously impossible.

Hi, don’t worry - he’s right.  With vaginal estrogen very, very little is absorbed into your system - it’s just effective locally.  Your risk of uterine cancer is no higher than it always was.  Even with systemic HRT, the risks were overstated due to flawed trials.  There is a slightly increased risk with oral estrogen but I have no choice - I’d be bedridden with pain if I stopped taking it.  If the vaginal estrogen is enough for you, then you are on a winner! Sorry to hear about your husbands op - I hope it goes well but understand how you ar under a lot of stress.  I think your IC didn’t come out of the blue but had been slowly coming on.  If I look back I realise I’ve had bladder issues most of my life - little things like having to sit on the end of the road in theatres in case I needed to ‘go’ etc.  If you think back carefully you might notice some ‘signs’ that you dismissed at the time.  In any event, a lot of illness come on fairly rapidly - it is a lot to get your head around but I would concentrate on getting your diet adjusted first and see if that helps.  There is anecdotal evidence that a gluten free diet is helpful but there is no scientific evidence for that.  Also I’ve been told by my Gynae to try a low Oxalate diet - that’s extremely challenging to do, but it’s something to try at some point. Don’t forget to drink plenty of water - i know it’s the last thing you probably feel like doing  but it’s a good idea to dilute the urine as much as possible to cause less pain and flush out any bugs that might be there.  If you can’t face water, lemon barley is good.  My urologist said ‘think of rubbing  whatever you’re thinking of eating into a raw open wound - if the idea makes you wince, then don’t eat it!’ You can take ‘pre relief’ tablets to help reduce any acid content.  They’re very good to carry round with you in case people drag you into diners!