Interstitial cystitis

Posted , 12 users are following.

I have had an irritated bladder for 6 years, but they can't find anything wrong, I keep getting cystitis I feel better taking antibiotics but as soon as I stop it comes back again. Does anyone else have this?

0 likes, 17 replies

Report / Delete

17 Replies

Next
  • Posted

    Hi, I feel terrible you've been seeing docs for six years and cannot get a proper diagnosis. It must be awful for you. Have you been seeing a specialist, a urologist? Also, taking lots of antibiotics are just not good for you. I hope you are taking a good probiotic every day. My gyn has told me that having IC cannot be helped with antibiotics. You need a certain number of bacteria in the urine to meet that level of infection. I believe she said it was something like 100,000 units...I wasn't even close to that number so it was not considered a true infection. I find, for me, the right diet helps...keeping to a more alkaline diet and avoiding the "bad" foods and beverages, drinking lots of water and very often, exercise, mostly pilates. If you haven't yet, perhaps you might try altering your diet and then see if that's helped. Best wishes..I know it's painful. A flare can come on at any time no matter how much care you take. It sucks royally. 

    Report / Delete Reply
    • Posted

      Yes I have seen urologists, they say they can't find anything wrong with the bladder. I do eat healthy and exercise as well. I keep urine strips at home because I can't tell the difference always if it's cystitis or not. I am just getting over a bout of cystitis, but as my bladder is always irritated it is very difficult. I don't always have to keep going to pass urine as well. So I am not sure if I have this or not. I find ice packs help a lot as well.....

      Report / Delete Reply
    • Posted

      The urologists can't find anything wrong with your bladder yet you continue to suffer. I don't understand. Can you request different docs? I realize that may sound crazy but to not be able to help you in all this time just mystifies me. It seems that you are doing all of the correct things, including diet. When you say you eat healthy...are you aware that with IC there are certain foods that are considered acidic and meant to be avoided?  If you try to keep off those foods and beverages perhaps that can help? In addition, has your urologist given you a cystoscope? This is a mild procedure in which a thin tube with a camera and light on the end is inserted through your urethra and into your bladder so the doctor can visualize the inside of your bladder. Your urethra is the tube that carries urine out of your bladder. I would imagine if your docs say they can't find nothing wrong that you may have already had this test. Just wondering why they can't find the issue. Just so you know, with my symptoms I only feel that urgency when I am having a flare. For me, that can happen from drinking caffeine (I haven't given up my coffee yet), as well as the other foods deemed too acidic (like tomatoes...even wine). Once I am in a flare, I get pelvic pain which can go from mild to severe. I find that if I drink tons of distilled water it helps a lot as does exercise (most times). Sometimes the pelvic pain feels like bad cramps.  And when I have to go to the bathroom I can feel pressure before, during and even after urinating. Since this began with me about nine months ago now, I find if I stick with the correct foods, water, etc., I can manage the flares a bit better. In the beginning of this mess I was having horrible pain all the time. Anyway, I'm sorry I can't be of more help. Your specialists need to be able to get you correctly diagnosed...that's their job..and not tell you that they don't know. If a specialist isn't able to diagnose correctly within a six month period perhaps it's time to seek a different doc. I hope you feel better.

      Report / Delete Reply
    • Posted

      I have had a camera put in the bladder, and also seen 3 different urologists, the only thing is I do have osteoarthritis in my back, and they said it could be that what is irritating the bladder. I have always suffered with cystitis but it's getting more often now. And when I don't have an infection it still feels like I have. I know all about the different foods and not to eat anything to acidic. Thanks anyway

      Report / Delete Reply
  • Posted

    I too suffer regular bouts of cystitis and have been given a low dose of Trimethoprim to take after sex and when I feel irritated I have found this helps a lot. It was also recommended to me to buy cystitis the complete self help guide by Angela Kilmartin in one of these threads and that was really good. I read it all in one sitting it gives a lot of tips to manage and help avoid the frequency of the cystitis and it was only a couple of pound so well worth a read.

    Hope you get some relief from this soon

    Report / Delete Reply
  • Posted

    I hope you feel better but

    I was having a lot of uti symptoms but no bacteria and my doctor said it could be cystitis. He recommends that I take cranberry supplements daily

    Have you had any hematuria?

    Have you had a cystoscopy?

    Scan or ultrasounds?

    Report / Delete Reply
    • Posted

      Hi, I read your response and was curious to ask if you have been taking the cranberry supplements? When I was diagnosed my gyn gave me a list of foods to avoid and one of them is cranberries. I'm just curious to see if the supplements help you at all.

      Report / Delete Reply
    • Posted

      No I haven't started yet, not sure if I will. I know lots of people who have the same as me and all they say is you have an over active bladder. What they mean is the age thing..

      Report / Delete Reply
    • Posted

      Hi...I know overactive bladder does seem to mostly hit women in middle age. However, IC can affect women (and some men) at any age. I've responded to women on this forum as young as 20. Some women who have written with overactive bladders have started to do self catherization. It saves them from having to go to the doctor so frequently and is not known as having interstitial cystitis,

      Report / Delete Reply
  • Posted

    New to this site. Over the last 9months several uti cystitis.had Mri ct scans cystoscopy flexy. Yesterday had ridid cystoscopy and a catheter placed in for one week to see if less painfull b4 another specialized scan. Omg on times i wish i was dead than have this pain. Lyn I feel ur pain i am sorry to hear u have been 6yrs with no diagnosis. And I am complaining about 9months x
    Report / Delete Reply
  • Posted

    Hi Lyn.  I am 61 now, was diagnosed with IC when in my 20s.  On and off problems, but this past 4 months HUGE flare.  Urine negative as usual, and this time the antibiotic (personal stash, because providers wont prescribe it)  didnt work.  I went online  and found some you tubes of physical therapists showing how to use a device "pelvic wand" (it looks creepy, but i was DESPERATE.)  I got one by mail, read EVERYTHING i could, and now i am doing the personal pelvic muscle therapy, which is basically applying steady gentle pressure to the trigger points.  Interestingly, the trigger points on the pelvic muscle mimic the urethral and bladder sensations!  The pressure is held for about 5 minutes while deep breathing, NOT HOLDING BELLY IN.

    Someone out there in you tube land associates the CONSTANT HOLDING IN OF OUR BELLIES (we all do it, dont we) as causing overstimulation of the pelvic floor muscles.  Makes sense, all muscles are attached down there.  So now, i have been IN CONTROL of the spasms.  Once a day. Takes about 30 minutes. 

    When i got flares in the past (seems mostly related to wearing tight pants! Vanity, thy name is woman!) I would ice the area immediately for instant relief.  Then take an aleve or two, then half a benadryl and drink lots of water.  Then, a hot bath with lots of epsom salt.  

    Now i follow this with the wand therapy.  And trying to retrain my bladder to wait at least 30 min to an hour (if i can stand it, hahahahah, usually cant, but that first relaxed voiding is like heaven.)

    AND MOST IMPORTANTLY, NO MORE KEGELS.  NO MORE HOLDING IN THE GUT! I practice letting my pot belly GO in the car, at home, or anytime i dont think anyone is watching (really now, at my age no one is watching!)

    So, i hope this helps.  Hope you dont have to wait till your 60 to get control of this thing.

    I havent changed my diet, but i do avoid acidy drinks (but sometimes still do, not a trigger like the tight pants thing).  Dont give up!  Doctors werent much help for me.  The physical therapy thing has been a godsend.  Apparently there are physical therapists who specialize in this thing "pelvic muscle dysfunction" here in the u.s., not sure about u.k.  good luck!

    Report / Delete Reply
  • Posted

    Hi,

    New here, so sorry for any mistakes!! 

    I can relate with what you are saying definitely. I’ve been having problems since March and my Urologist has decided I have Interstitial Cystitis. I’m having the same sort of issues as you... I was initially on and off antibiotics because my pee tests never showed any infection on normal tests but antibiotics ALWAYS helps my symptoms. 

    My main symptoms have been some discomfort (not unmanageable currently), feeling like all the energy has been removed from my body (which has affected me most!!) generally feeling a bit unwell, slight temperature and a tonne of anxiety/depression

    I do pee tests almost daily and there is almost always Leucocytes and Protein at some levels.

    I’ve had an ultrasound and also I had a cystoscopy earlier this year which didn’t show anything in particular. 

    After this, my urologist left me to suffer for a bit and i had to beg antibiotics from my GP just to keep working to pay the bills until i managed to get back to see him.

    As my Urologist didn’t seem to know what to do, I suggested longer term antibiotics which he didn’t expect to help, but at the moment they are just about keeping me going (which really surprised him last time I saw him), but not fully as I really struggle with energy, feeling a bit pants all the time and my anxiety is through the roof some days.

    I’m now on a low dose of Trimethoprim nightly for the foreseeable, but i feel like I’m being fobbed off a bit and I don’t know at what point they will stop working or what I should be doing next.

    I’ve also been taking D-mannose for a few months although I’m not sure if that helps and also daily probiotics.

    I’d be really interested to hear from other similar people to see what they think and what they have tried and whether I should be pushing for more from my Urologist (or a second opinion) or just learning to live feeling so drained all the time and struggling from week to week.

    Much love to everyone here!

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up