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  1. #1
    ICN Member
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    Unhappy Hi there! I'm not sure what I have, but it's definitely unpleasant. :(

    Hi there!

    Firstly, I would just like to thank the person who accepted me. I remember signing up to this place last night because it seemed to have a lot of members that understood lots of facts on Interstitial Cystitis and Cystitis. I remember doing a search on Google, crying my eyes out. I just know I can't take much more and I'm sure my story is not as half as bad as some of the other guys on here, but it's making me feel miserable and lonely.

    My name's Hannah. I'm an eighteen year old girl and I recently moved up to London (which is a good 100 miles away from where I'm originally from) to be with my boyfriend. Ever since I've been in a relationship with him, I've been having symptoms which appear to be Cystitis. It was both our first time and we love each other to bits.

    I must have had Cystitis now at least four or five times since I actually came down here, which was during the summer. The longest I had it for once was somewhere over a month and the bout I'm suffering from now, well.. it's just coming up for a month.

    I've been suffering from diarrhoea for over a month, the occasional headache, stomach cramps occasionally and Cystitis. The Cystitis was NOT caused by the diarrhoea, I know how to wipe myself, lol!

    What I find most strange is that the attacks do not come along until late at night or you could say they were the early hours of the morning. They usually range between 3 AM to 6 AM. At this time, I drink tons of water and avoid going sleep. As you can see, it is severely damaging my sleeping pattern, I often have bloodshot eyes. I always have baths whenever I feel pain generating down there, but with being away from home, I sometimes feel scared to do things in a different environment. I also feel lonely, because I have no family or friends or anyone to talk to sometimes when the attacks happen. If I decide to sleep before it happens, I'll wake up in absolute agony.

    The first time I had Cystitis, I took sachets. They've worked twice, I think. The time after and after that, they've failed to do their job. The last time I had it, I did a urine sample there and then at the doctors and they picked up nothing. I also took some tablets, which didn't work and in the end they gave me a different type. The different type took a few days after it was fully taken to kick in, but what I found really strange was that when I went home, it had cleared up. My boyfriend even came round to my Dad's house for around two and a half weeks and no Cystitis occurred then.

    I also did another sample which they sent off a while back and they found two types of something in it, but couldn't determine what they were. I went again this Monday to see the nurse, who did another urine test. Negative. She's sending the urine off this week, I should be getting a result this Friday, it was the same urine she tested whilst I was there, although the other doctor threw the test I did for her straight away because it was 'sterile.'

    The nurse told me to take cranberry tablets, which I tried for about two days and then gave up. They didn't help and I was starting to experience stomach cramps and feeling a bit worse for wear. Is this unusual?

    I wouldn't put it down to stress, although the fact that I've had it for so long is now starting to worry me.

    I feel sad, scared and confused. I wish I didn't have to experience this! I would also like to point out that 99% of the time, my urine smells. It's so awful, it's like acid. It's hard to imagine the body can produce anything like that! I drink tons, I'm always drinking, although it never helps to clear the infection. Why is it refusing to go? So many questions, it's driving me insane!

    Ah, thanks guys. Thanks for reading my story.
    Last edited by Hansie; 12-09-2010 at 05:38 PM.

  2. #2
    ICN Member
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    Symptoms.

    The symptoms I'm experiencing include:

    x: Timed attacks, which can either occur in the morning or late at night. Usually at night because I'm always up trying to rid of it so it no longer bugs me in the day.

    x: Fowl smelling urine, which smells so unusual I can't even think of something to compare it to, but rather acidy.

    x: The bladder usually feels a lot better when it is fuller. Sometimes I feel scared to empty it.

    x: The feeling of constantly needing to go for a wee and there's nothing there. So what I usually do is run a bath, get in and do the passing motion to just help it a little bit.

    x: Sometimes I feels like it's not actually where the urine passage is, but lower down where the other hole is, lol! It's easier to describe it that way, but maybe this is because I've heard that they aren't very far apart!

    NOTE: Will add more if I think of them, I'm sure I've probably forgotten a few!
    Last edited by Hansie; 12-20-2010 at 11:23 AM.

  3. #3
    ICN Member
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    Hi, It sounds like you have a typical uti because of the foul smelling urine and you dont mention whether or not you have been diagnosed with IC. I hope thats not the case. UTI's are generally easy to treat with anti-biotics. Sometimes the dr will do a culture to see if you are resistant to a certain anti-biotic. You may just have chronic urinary tract infections. Its good to drink a whole lot of water every day to flush out the bacteria. I dont know if you are sexually active but its good to urinate before and after sex also. There are supplements on the market like D-Mannose, cranberry pills for uti, and golden seal which have anti-biotic properties. you can get them over the counter from your local drugstore or vitamin store.You probaly need to take them every day for preventative measures.PS cranberry tablets generally dont cure UTI's they are for prevention. I see you say you gave up on the cranberry pills your nurse gave you. Another thing you want to do is get tested for STD's. Stds can cause the same symptoms. good luck
    Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

    I have moderate-severe IC

    Currently stopped taking all medications due to pregnancy

  4. #4
    ICN Member kmstrong07's Avatar
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    I have chronic uti's. Sometimes when I go to the doctor, I have drank so much water that they cannot pick up bacteria on the test because my urine is so diluted. When I go first thing in the morning after the urine has sat in my bladder, the test will pick up the infection. Like you, when I get the uti, my urine smells awful. It is caused by an e coli infection. I know how to wipe properly and I still get them. The success I have had with prevention is: urinating at least 30 minutes after sex, I use flushable wipes after every bowel movement, My husband and I wash before and after sex and I always make him pee also before sex because for men, everything comes out of one hole. Also as "needsrelief" stated, I use D-Mannose. So far it has worked. I take it everyday if I have an infection or not and it seems to help prevent an infection. You should really research it and see if you can purchase it in London. I am in the US and it is easy to find here. I bought for the first time on Amazon and I just found a store not to far from where I live that sells it. I know how you feel. I was getting a uti every 1-2 weeks after finishing my antibiotics. You can also take some AZO to help with the pain. It turns your urine and icky orange color but when i have a uti, it helps.
    Kathy Strong

  5. #5
    Support Volunteer sailawaygrl's Avatar
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    Hi Hansie,

    I am sorry you are having to go through all of this, and to be away from family and friends has to make it even more difficult. I know that it sounds like you are having chronic uti's but if they continue to not find anything, I would definately push for them to test you for other things. IC is a diagnosis of elimination. So, if they determine that what seems to be uti's really aren't then you should have some other tests to rule out other things and eventually they will be able to determine what is going on with you. Some of the tests they will run are for sexually transmitted diseases ( don't let that offend you, it is hard not to but it is just one of those necessary things) and possibly a biopsy to rule out anything else.
    It might be of use to document what you are experiencing. Sometimes when you begin to write things down you will notice that it doesn't hurt only at night, or maybe something else you didn't notice before.
    I hope that all you are experiencing are uti's and not IC. It does sound strange that all this started when you moved to where you boyfriend lives. I know I had a friend that used to get a UTI everytime she had sex. Don't worry if that is the problem, there are things they can do for you! Please don't expect the worst, and try not to worry. Maybe your boyfriend needs to be treated as well?? Sometimes that can help.

    Best of luck to you,
    Sandra

  6. #6
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    Thumbs up

    Thank you for all of your kind replies. I have read/considered them all and took in all of the knowledge that I could from others to a full degree.

    This is just an update on how I'm doing right now. The urine sample that didn't pick anything up from when I went to the doctors last time and was sent off to the hospital eventually came back with a positive result. They told me that they did a lot more tests on the sample this time and found bacteria in it and that it was sensitive to Trimethoprim. I took the tablets (twice a day for a week) and was very impressed with the results. Finally, I could sleep! Finally, I could enjoy things and go places and not be bedridden all of the time. There were a few moments where it stung a little, but nothing compared to what it used to be like!

    Ever since I've finished the course of tablets, I've been suffering from a little bit more pain from when I was actually taking them. I'm scared it's going to come back, so I'm going to monitor it this day and the next. I might have to consider getting some more medication, maybe this is something I'm going to be stuck with?

    I've not had the best of health with my bowels recently either, lol. I just hope both problems are not serious.

    Once again, thank you and feel free to reply if anyone else has been going through similar circumstances.

  7. #7
    ICN Member
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    Unhappy

    Interstitial Cystitis can cause UTIS I had alot of utis before i was finally diagnosed with IC. I had a uti 3 weeks ago took my antibotics and now my IC is acting up. Doctor started me back on my DMSO treatments i go in for another one tuesday. Unless i have another uti then they have to get it cleared up before they can do a DMSO. This disease is awful and i wish they would find a cure, or if everyone can go into remission until they find a cure that would be good.

    You might want to see a Urologist and have them check you for IC. I hope and pray you do not have it but if you do it is best to start treatments asap.

  8. #8
    ICN Member
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    Quote Originally Posted by Hansie View Post
    The symptoms I'm experiencing include:

    x: Timed attacks, which can either occur in the morning or late at night. Usually at night because I'm always up trying to rid of it so it no longer bugs me in the day.

    x: Fowl smelling urine, which smells so unusual I can't even think of something to compare it to, but rather acidy.

    x: The bladder usually feels a lot better when it is fuller. Sometimes I feel scared to empty it.

    x: The feeling of constantly needing to go for a wee and there's nothing there. So what I usually do is run a bath, get in and do the passing motion to just help it a little bit.

    x: Sometimes I feels like it's not actually where the urine passage is, but lower down where the other hole is, lol! It's easier to describe it that way, but maybe this is because I've heard that they aren't very far apart!

    NOTE: Will add more if I think of them, I'm sure I've probably forgotten a few!
    This sounds like a UTI except for the fact that the attacks come and go. Also, diarrhoea is not a common symptom. Did the doctors test for chlamydia and gonnorhea or just the standard UTI test? You may not even be at risk of the other two, but apparently they present the same symptoms as UTI. I have not had either of these but the doctor insisted I be tested for them when I had my first UTI despite the fact that I had been married for many years. We had a bit of an epidemic of chlamydia in Australia at the time When I had my first UTI, I literally felt like I had a bowling ball sitting in my pelvis, the pressure was that heavy! Regards, Linda

  9. #9
    Support Leader kadi's Avatar
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    My doctor gave me antibiotics to take when I have diarrhea. Even though I clean up well afterwards, sometimes I still get a UTI. So, now if I have diarrhea, I take one Macrobid and that usually prevents getting a bladder infection...
    Kadi

    -------------------------------------------------------------
    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    ------------------------------------------------------


    This week's favorite one-liner:
    "Just remember, if the world didn't suck, we'd all fall off. ~Author Unknown
    "


    New second favorite:
    Please, Lord, let me prove that winning the lottery won't spoil me.
    - Unknown


    Adding a third because I'm just so darn easily amused...
    "Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.
    - Bruce Graham"



    Current treatments:
    -IC diet
    -Elavil 30mg at night
    -Ditropan 5mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills every morning and night
    -Pyridium if needed, usually once a week or so
    -1 Vicodin at bedtime,
    -Flexeril 10mg at bedtime
    -Dye Free Benadryl for allergies occasionally
    -Pelvic floor & myofascial release (external only) physical therapy for 8 weeks, then home exercise program...
    -Managing stress
    -Fur therapy: Hugging the cat!

  10. #10
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    Unhappy

    Ah, I'm predicting that it is finally back again now!

    I went to urinate less than ten minutes ago and it smelt that same and very nasty acidy smell. I had to have another bath yesterday because it hurt!

    I guess I'll be reliant on lots of medication for the rest of my life! Either that or I just can't have a close relationship with my boyfriend because it's putting me in jeopardy, lol! I'm one hundred percent certain that there is no STIs involved. We both waited for the right person and I can swear on my life that this isn't the case.

    The only horrible thing about this now is the timing. This may end up being a miserable Christmas!

    I hope everyone's doing okay and thanks.

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