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Old 12-11-2007, 01:58 AM   #1
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I'm at end of my tether with this.

I dont really know where to start but here goes....

Ive suffered from i think cystitis on and off for about 15 years. But recently about the last two years it has got worse. i have been under a urologist for these two years, who has completed 2 cystoscopies with urethral stretches. there was nothing on the scans she took of the bladder while having my cystoscopies, just a little inflammation. I was fine for a few months after my first cystoscopy, but after my 2nd one, things didnt really improve at all.

I had all this done privately and it cost £1200 each procedure. I then was transferred over to the NHS with the same consultant as i couldnt afford to pay out of my own pocket anymore. She then embarked on a course of 6 treatments of Cystatin, which was cathetered into my bladder and i had to lie on a bed for an hour to coat the lining of the bladder. This didnt work. Now she wants me to have another cystoscopy and stretch but this time in the NHS hospital which is rife with MRSA. I have turned this down as im petrified of contracting MRSA through the bladder procedure.

Today ive woken up, im in pain again, it hurts when i pee and afterwards from this horrible dragging pain in my bladder area. Im sure there are bugs in my urine again, but i dont want ANOTHER course of antibiotics, my body will reject them if i carry on.

Im thinking of trying D-mannose to see if i can get rid of this homeopathically.

I really dont know where to go next, Im sick of this, my life is so pulled down by this constant underlying problem, that no one seems to be able to get to the bottom of.

Any suggestions anyone ? Thanks

Last edited by Worrybucket; 12-11-2007 at 02:02 AM.

 
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Old 12-11-2007, 06:03 AM   #2
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Re: I'm at end of my tether with this.

There's a possibility that you've already tried this but have you tried drinking cranberry juice or taking cranberry extract supplements? The cranberry prevents bacteria from sticking to the lining of the bladder and urinary tract. I've battled with UTI's for a while and the cranberry juice(%100 cranberry) has helped tremendously. I also use the cranberry in pill form because I don't like the bitter juice and it helps as well.

Good Luck!!!!!

 
Old 12-11-2007, 02:01 PM   #3
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Re: I'm at end of my tether with this.

I have tried cranberry juice, but the urologist said as she thinks i have interstintal < not spelt right cystitis that cranberry is more of a hinderance than help, as its not supposed to be bacterial.

But i show bugs up on my urine test quite a lot, and my wee does smell when its bad enough. Where can i be getting all this bacteria from? fo rit to keep lingering in my urethra? its like i ahev times when im sort of ok, never 100% andits likeits lurking there all the time. Im so fed up with it now after 15 yrs.

 
Old 12-12-2007, 05:54 AM   #4
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Re: I'm at end of my tether with this.

Today the pain was worse on urinating. I pretty much knew i had an infection.

I work in an ER dept at the hospital so i popped into one of our doctors and he did a urine dip test and yes i have an infection. The constant problem i get is that a lot of the antibiotics prescribed for me i seem to be resistant to. I would have liked to have waited until the culture came back after 3 days, but th eDoc said i should go on the trimethropin which is the broad spectrum antibiotic and if im resistant to that one i can change over in 3 days.

The doctor asked me what had been diagnosed, and after 15 years i really dont know, as the urologists ive been under for 2 yrs says i have interstestinal cystitis but i thought that was a cystitis that had no bugs in it, and i frequently get bacteria in my urine. Im so fed up

 
Old 12-12-2007, 08:12 AM   #5
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Re: I'm at end of my tether with this.

I was just told that sugar feeds bacteria. I have to keep mine intake down to a minimum. I was just told that I have yet another infection and have been put on a strong antibiotic. Also pyridium to help soothe the bladder. This has been ongoing for me for the last 3 months. But I had symptoms on and off for much longer than that. I worry about the bacteria becoming resistant to the antibiotics.

 
Old 12-12-2007, 08:23 AM   #6
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Re: I'm at end of my tether with this.

I did hear that D-mannose is good for chronic UTI's. I would definitely give it a try. I am good at trying natural or homeopathic remedies. I hope you get better soon!!!!!

Hugs,
Aleet7

 
Old 12-21-2007, 11:35 AM   #7
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Re: I'm at end of my tether with this.

i work at a hospital so have easy access to any quick diagnoses (only perk of the job)!

I had my urine tested which showed a bug. Doc put me on antibiotics (trimethropin) and i waited 5 days and did another urine test at work yesterday. Doc said i had the E coli bug in my urine, and after the antibiotics said i was clear. I still feel like im having slight symptoms though. But he said just drink plenty of water.

Im just worried that as soon as i have sex with my Husband again i will get it again, so my question is this...

Does anyone think my Hubby may be carrying this bug and reinfecting me everytime we have sex, as this cystitis im getting happens mostly after sex and it isnt bruising i actually DO have bugs in my urine. HELP !!

 
Old 12-21-2007, 05:27 PM   #8
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Re: I'm at end of my tether with this.

Hello,
I'm not sure if that is possible or not , but after having a marathon of sex with my husband i got one too , but my infection never showed up till the third test and when they did a culture nothing grew so i'm not sure if it was a bug or not now ... I wonder if maybe they ( hubby ) chaff on the bladder and it gets irratated that way or not is that even possible ?
Skipa

 
Old 12-21-2007, 07:22 PM   #9
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Re: I'm at end of my tether with this.

when I was in college (studying biochemistry) the proffesors referred to cystitis as the honeymoon disease so there has to be some connection there :{
Dolores

 
Old 12-24-2007, 06:17 AM   #10
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Re: I'm at end of my tether with this.

Quote:
Originally Posted by skipa dee babe View Post
Hello,
I'm not sure if that is possible or not , but after having a marathon of sex with my husband i got one too , but my infection never showed up till the third test and when they did a culture nothing grew so i'm not sure if it was a bug or not now ... I wonder if maybe they ( hubby ) chaff on the bladder and it gets irratated that way or not is that even possible ?
Skipa
The only UTI's I got were a direct result of sex with my husband! My doc recommended me urinating immediately after sex and this was the best remedy to my frequent UTI's! I never got them again. I still remember to urinate immediately and now I never get them!!!

 
Old 12-24-2007, 06:20 AM   #11
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Re: I'm at end of my tether with this.

Quote:
Originally Posted by Worrybucket View Post
i work at a hospital so have easy access to any quick diagnoses (only perk of the job)!

I had my urine tested which showed a bug. Doc put me on antibiotics (trimethropin) and i waited 5 days and did another urine test at work yesterday. Doc said i had the E coli bug in my urine, and after the antibiotics said i was clear. I still feel like im having slight symptoms though. But he said just drink plenty of water.

Im just worried that as soon as i have sex with my Husband again i will get it again, so my question is this...

Does anyone think my Hubby may be carrying this bug and reinfecting me everytime we have sex, as this cystitis im getting happens mostly after sex and it isnt bruising i actually DO have bugs in my urine. HELP !!
I always got UTI's after sex with my husband. My doc told me to go and urinate immediately after and this has worked for me!!! That was about 20 years ago and I still go and urinate and haven't had one since!!!!!

 
Old 12-24-2007, 06:54 AM   #12
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Re: I'm at end of my tether with this.

Ive done that and washed before and after sex too, sometimes it helps, sometimes not. It helps a bit too if Hubby washes before, but it sort of takes the spontinaety out of it all

 
Old 12-24-2007, 01:41 PM   #13
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Re: I'm at end of my tether with this.

This is my response to myself 4 years after first being diagnosed with Urethral Pain Syndrome (a condition that doctors are only recently hip to. Of course there's not much information about it since it mostly effects women - sense my sarcasm?). I went through so many painful procedures that didn't help. If you haven't been diagnosed with Interstitial Cystitis then the horrible bladder instillations are not going to help you. Here's my response to a post I submitted years ago- I just want to tell you there is going to be an end to the pain. I have the exact same thing and it is GONE. The only time I get the pain is a little at night after a long day. Please take heart. I know at my worst I almost wished for death. My Christmas present give to you is hope. It will go away. It may take a lot of time and commitment on your part but it will pass. It took me a long time. I am not going to say how long because I don't want to scare you but just please don't worry. Worry will make it worse. I did everything from Yoga to Diet to Narcotic medication. I went through Kaiser's chronic pain program. I went to Pacific Center for Pelvic Pain. Hardly anything helped. My best advice is to take care of stress through whatever relieves you. Meditation is great. Behavioral Therapy is great. Cognitive Therapy is great. Cardio exercise is a must. Weight training and stretching is very helpful. Special Pelivic exercises are great. But not Kegels - DON'T do Kegels (vaginal tightening) it will make it worse!!!! I would check into Feldenkrais workshops in your area. Unfortunately narcotics maybe necessary to cut through and break the cycle of pain. I had to take a lot despite being in recovery. But I worked very closely with my doctor and sponsor and got through it. The reason I am back here to post about my success is that not a lot of people do that. I know when I am in need of encouragement on these boards I am hard pressed to find help from other than from fellow sufferers. So remember - after your problem is resolving - drop back in and give hope

 
Old 02-29-2008, 09:00 AM   #14
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Re: I'm at end of my tether with this.

Quote:
Originally Posted by Rani View Post
This is my response to myself 4 years after first being diagnosed with Urethral Pain Syndrome (a condition that doctors are only recently hip to. Of course there's not much information about it since it mostly effects women - sense my sarcasm?). I went through so many painful procedures that didn't help. If you haven't been diagnosed with Interstitial Cystitis then the horrible bladder instillations are not going to help you. Here's my response to a post I submitted years ago- I just want to tell you there is going to be an end to the pain. I have the exact same thing and it is GONE. The only time I get the pain is a little at night after a long day. Please take heart. I know at my worst I almost wished for death. My Christmas present give to you is hope. It will go away. It may take a lot of time and commitment on your part but it will pass. It took me a long time. I am not going to say how long because I don't want to scare you but just please don't worry. Worry will make it worse. I did everything from Yoga to Diet to Narcotic medication. I went through Kaiser's chronic pain program. I went to Pacific Center for Pelvic Pain. Hardly anything helped. My best advice is to take care of stress through whatever relieves you. Meditation is great. Behavioral Therapy is great. Cognitive Therapy is great. Cardio exercise is a must. Weight training and stretching is very helpful. Special Pelivic exercises are great. But not Kegels - DON'T do Kegels (vaginal tightening) it will make it worse!!!! I would check into Feldenkrais workshops in your area. Unfortunately narcotics maybe necessary to cut through and break the cycle of pain. I had to take a lot despite being in recovery. But I worked very closely with my doctor and sponsor and got through it. The reason I am back here to post about my success is that not a lot of people do that. I know when I am in need of encouragement on these boards I am hard pressed to find help from other than from fellow sufferers. So remember - after your problem is resolving - drop back in and give hope
I just wanted to say thank you for posting this. It was helpful and encouraging to some degree but right now I think I am at the place you once were, I feel like all hope is gone. I hurt so badly and the pain is unbearable, I to have even been to the point of wishing for death. I get no where with my OB/GYN and have been completely bedridden for about the last 17-18 days with this. (Yes, the pain has been that bad, and that's with narcotics) I don't know, I am just so very discouraged, but thank you anyway for your message.

 
Old 02-29-2008, 03:47 PM   #15
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Re: I'm at end of my tether with this.

Quote:
Originally Posted by kygirl2978 View Post
I just wanted to say thank you for posting this. It was helpful and encouraging to some degree but right now I think I am at the place you once were, I feel like all hope is gone. I hurt so badly and the pain is unbearable, I to have even been to the point of wishing for death. I get no where with my OB/GYN and have been completely bedridden for about the last 17-18 days with this. (Yes, the pain has been that bad, and that's with narcotics) I don't know, I am just so very discouraged, but thank you anyway for your message.
Kygirl, I am so sorry that you are feeling so bad! What have you been diagnosed with? I am hurting pretty bad too. My doc thought I had pelvic organ prolapse and now he thinks that it's Interstitial Cystitis! I'm still going through all the humiliating tests. Next week I'm having the potassium sensitivity test, a Ct scan and pelvic floor therapy. I am also on narcotics that do absolutely nothing for the pain! I end up laying in bed by 5 pm most days! I hope that you start feeling better soon!
Best Wishes,
Aleet

 
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