Do i have interstitial cystitis?

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Doctors keep telling me that 21 is too young to have IC, although i display some symptoms. Urine samples with no bacteria, just blood; a constant feeling of discomfort in my urethra; pressurised feeling on my bladder; urination frequency. How do i stop doctors from dismissing me with another course of antibiotics and refer me to a urologist? 

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  • Posted

    Hi Lauren, it sounds like you may reside outside of the US. Otherwise if he is a primary doctor and not a specialist and he can't figure out what is wrong with you he should be referring you to a specialist, in your case a urologist. They will have a proper course of action for you. I'm not sure why you are showing blood in your samples, though. A urologist should be able to say why that is. My gyn had explained that while there was bacteria in my specimen, it wasn't enough to constitute a full blown infection. Therefore, it was not called a bladder infection or a urinary tract infection. She kept referring to something called "IC" and at the time I had never heard of it. She gave me a listing of foods to avoid, to keep to a more alkaline diet because there is too much acid which causes the pain. There are treatments for IC but they don't work for everyone and the flares usually always come back. I drink lots of filtered water, that also helps. And if the pain isn't too bad, exercise also helps, especially Pilates. There is proof that some women with IC have pelvic floor issues so a visit to the urologist is important. Stay away from spicy foods, caffeine, tomatoes. Anything with sugar or nitrates. Eat as clean a diet as you can. Most of the time this allows me to be relatively pain free but not always. I absolutely have to have my cup (mug)!of coffee in the a.m. As I haven't cut it out, it sometimes comes back to haunt me. Lastly, I've read forums and even in this site where women as young as their teens are plagued by this. So I'm not sure why your primary or GP is advising younin this way, Demand a referral. If you are in the states and have an HMO and the primary is dragging his/her feet with respect to referring you, please know it is his job to do so. Oh and I get those symptoms too. Well, I hope you can get to feeling better soon.myounare very young. I hate to see you have to go through this when life is out there waiting for you! Best wishes and get your answers! Try my suggestions if you haven't already done so. Drink lots of water! 

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    • Posted

      Thank you so much for sharing your knowledge! You're right I live in the U.K. There seems to be very little known about IC here which is frustrating. I've been booked in for an ultrasound (I've already had one two years ago and nothing showed up). After this the doctor said she would refer me to a urologist. I'm currently eating an IC diet which still desperately hoping it isn't IC although I'm sure it is. I know that the urologist will want to use a catheter which terrifies me as I feel it could worsen the pain. Sorry for the rant it just feels like no one understands what I'm going through right now, thanks for listening.

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    • Posted

      Hi again Lauren, ok, well, as far as catheter, don't be afraid. What happens is there is a treatment called a bladder installation. This is when they thread this catheter-like thing into you until it reaches the bladder. Then a cocktail of one or two medications is emptied into your bladder. You hold it in for a while and then eliminate it. The meds given are supposed to coat the bladder, breaking a flare, as the onset of pain is called. My doc wanted me to do this but said if it worked I would have to go SEVEN more xs to have it done and I said forget it. I wouldn't/couldn't go back each week for that mess. I understand there is some mild sedation but I'm sure you're awake. Other women I've read say it doesn't hurt and it's not a big deal. The other time a catheter may have to be used is if you are not going to the bathroom fully, getting all of the pee out. At my worst, it hurts so much if I don't go when I need to and when I do go it is painful and hurts afterward, too, almost like throbbing. It's awful. Anyway, for those women who do not fully eliminate, some docs have their patients do self catheterization. I've read about it in the IC forums. While it may not be the thing you want to do, I hear once you get the hang of it it's not so bad. But you won't know until you get to a urologist. What is it about the NHS? They save more money by not sending you to a specialist? Believe me, healthcare sucks so badly here...we don't quite know what will be law soon but if those deviants have it their way, we won't have access to very much...primarily due to the expense. If this bill passes, IC would be known as a pre existing condition...which means your premiums would shoot sky high. Anyway, that's just me being sidetracked! Tell your Gp you need a urologist and don't fancy being treated by someone who obviously has no knowledge of IC. I've spoken with other women on this forum who are in England and they have been to specialists..urologists. Don't worry about the catheter giving you pain, you'll be fine if that's what is needed. The junk they spill into the bladder coats and comforts you. One other thing, a lot of women use these freeze dried aloe Vera capsules which are supposed to help a lot. Not sure if I mentioned it. They could help if you can get them over there. And just make sure  that you're keeping to an alkaline/IC diet. Also, just what an ultra sound will show I have no clue. Maybe they want to just make sure nothing else is going on. It's likely a wasted step but that's ok. You really should have been seen by a urologist already. And by the way, the studies are being done and they talk about clinical trials here in the states, but most docs really haven't got a clue. If they do say you have IC it is not a death sentence. You are young and in time the symptoms may lessen and not be much of a bother. Just do your best to eat clean, get rid of junk...sugars, white flour, etc. Try to eat mostly a plant based diet, following the IC restrictions. Drink lots of water. I think you'll be ok. But still a bit of a concern regarding blood in urine unless it was because it was close to that time of the month. You didn't rant. You deserve answers and your present doc just isn't giving them to you. Well, best wishes and I do hope you feel better soon. Sorry for being so longwinded! 😁

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    • Posted

      Hi again, so it's been so long I never got a notification! Since our last conversation I've had the ultrasound in which everything looked good, so I went back to the gp to discuss and she said it wouldn't be taken any further until I'd had a full sti check (even though it's almost impossible that I would have an sti) before they would even consider a urologist. Now my only symptom is pain in the urethra after I urinate, there is no pressurised bladder feeling anymore but the urethral pain is quite bad. Thank you for sharing so much it's really made me feel like I'm not alone in this awful situation! Hopefully I'll be referred soon, and yes the state of our healthcare is rather concerning x

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    • Posted

      Hi Lauren, I cannot believe your gp won't send you to a urologist. This makes no sense. And if they think you need an sti workup why haven't they done so, even if you don't feel you need one...if it is their protocol then do it so you can see a specialist! As it has been so long since we have corresponded and I'm not sure without reading your earlier posts as to just how long you've had this, it makes little sense to me that they won't refer you to someone much more qualified than a gp to determine exactly what is going on. I am not even certain at this point what an ultra sound alone will show, especially as your pain is coming from the bladder area. I don't know when you see this doc again but I would continue to make the request for a specialist until you get one. I'm not sure how this all works in England. Here in the states you get a referral to a specialist and the referral is good for usually a 90 day period. I don't know if it saves the NHS $$$ not to refer a patient to a specialist but over here when you do see a specialist, the copay (what you pay before you are seen)  is higher than seeing your gp or primary doc. Either way, if it's necessary, it's necessary. Of course, the state of our healthcare can change at any moment to the point where literally millions won't be able to afford coverage and if disabled, have their benefits cut to shreds. It is extremely bad over here and I only hope you guys fare better with Corbyn on the rise. If you are a fan of May, my apologies. I would truly consider requesting a referral as soon as possible since you've been dealing with the symptoms for quite some time now. And, while I'm glad to hear you don't have that awful pressure in your bladder, the pain or pressure you're feeling from the urethra tells me there is pressure coming from the bladder, trouble emptying it with that pain you're having. It doesn't sound like an std (sti) to me, either. Keep making the request. I wish you a pain free urethra! Take care and thanks for writing again.

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    • Posted

      Hi Lauren. Ive only just seen your posts and i hope you sre getting sorted by now

      Ive had IC for about 5 years now and it keeps flaring up and getting better. I still have an awful pain when my bladder is full and when i actually pass urine. I didnt get diagnosed until after i had 3 cystoscopies and 2 biopsy's. I found that the cystoscopies were nothing to worry about.not painful but a bit uncomfortable..i always try to eat a diet without too much acid. Decaff tea and coffee. No strawberries or acidy fruit. One thing no one has mentioned, no cranberry juice. Its ok for infections but not for IC because your bladder is inflamed. Hope that by now you will have a diagnosis. Its not nice but if you follow the diet it can get a lot better..Good luck.

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  • Posted

    Hi lauren92246 You may well have this it took me quite a while to Get a diagnosis I just kept going back till my doctor referred me to a urologist.
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  • Posted

    I have the exact same thing!!!
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  • Posted

    Hi again Lauren. Just to tell you thst i always gave blood in my urine samples. The doctor doesnt seem concerned about it. If you think about it if there is inflamation there may be traces if blood.

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