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Old 02-21-2008, 04:02 PM   #1
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Question Chronic UTI with no relief in sight! please help!

Hi Group! I found this site while trying to find more information about the terrible condition that is killing me. Please, look over this information and let me know if anybody out there has/had this and what you done for it. I have spent all the money I have on the MANY doctor bills and SO many different drugs, as well as hospital bills due to this condititon!This is a novel, but maybe it will help decipher this mystery!
Strange how one can remember such details, but when you have something of this nature for so long, you will search your memory to try and figure out what led up to pain/irritation that is so bad! I am sure though that my memory has probably failed me on some of this info, but, this is the best I can recall since this has been going on for so long.
Up until April of 2006, I would have a UTI about every 6 months. Any antibotic prescribed would resolve the infection after about a week, with no other issues for about 6 months.
About April 2006-
Im really not sure if I actually went into the clinic, since UTIs seem to be chronic for me, I might have just called and the Doc called in meds, anywho, I was put on phenazopyridine and Nitrofurantoin. No relief after about a week. Antibiotic changed to Cipro. Another week still no relief. Antibiotic changed to Bactrim.
Particial relief in a day or so, complete relief in about 3-4 days, yet REAL itchy blotch shows up on my arm, so I call the receptionist at my clinic, and she says that she is allergic to Bactrim and that is exactly what it does to her. Thankfully, I had been on the drug long enough to get rid of the UTI. That was in the summer of 2006 and was the last time that I have been pain-free and UTI free since.

October 2006- Basically a repeat of above, although Bactrim was never prescribed. Finally after about a month of different antibotics, doc decided it best to send me to a Urologist. No infection found plus he looked in the bladder with a scope and everything looked completely normal. He tried me on Enablex and Levsin sublingual. Neither done anything for it. I would say I went to him for a couple of months before throwing in the towel with him.
Also, I would say about August of 06 is when the whole scare started with the oral Premarin doing some sort of internal damage, so I quit taking oral Premarin that month. I dont know if this could be related some how to this bladder issue or just a coincidence in timing.
That urologist is who prescribed the Premarin cream that I am currently on, although his directions were to just use about a "1" squirt of it smeared around twice a week."

Sometime during the next few months I was at a restaurant and it was bothering me BAD, so I went to the Walk-In clinic, this was on a Sunday. Cant remember the Dr that saw me, but he didnt find an infection and basically sent me on my way. Well, me still in such pain from this, I looped back around to the ER. The ER doc wanted to know who had told me that I did NOT have a UTI and I told her that I had just came out of the Walk-in and that Dr was who said that I did NOT have a UTI. She looked sorta funny and said, "Well, you DO." So, she prescribed BACTRIM and something for the pain, but I cant remember what it was.
At that time, I could remember SOMETHING about BACTRIM, just not what it was, so I got it filled and started taking it. This was at about 7PM. The next morning I was already feeling relief from the UTI, but the itchy blotch had already showed up. That is when it dawned on me what it was about BACTRIM! So, I think I called my regular clinic and the antibotic was changed. I dont remember to what though.

OK, basically, the same thing has went on up until now with this ongoing feeling of a bladder infection that isnt there. I was real surprized a couple of weeks ago when I went in to the clinic and the urinalysis showed a BAD one since I didnt feel any different than I do everyday. Then, just Tuesday I went back in after Di

Thusfar, I have been to 3 Urologist. The last one, brought me in to the hospital and done a distention and looked around in there. Right before I went under, I did ask the man,"Will this fix me?", his exact reply was, "No, I dont think so. I really dont expect to find a thing." Seriously, that is EXACTLY what he said. Well, he didnt find anything wrong. He said,"Your bladder is completely normal." That was the last time I went to a Urologist.
Up to this point, here is a list of all the different drugs that I can remember trying for this, whether antibotics, painkillers, etc:
1. Nitrofurantion 2. Cipro 3. Pyridium 4. UroBlue 5. Pyridium Plus 6. Enablex 7. Flomax 8. Mepergan 9. Ultram 10. Tramadol (name brand more effective than generic, takes 2 generic to the 1 Ultram) 11. Amitriptaline 12. Lyrica 13. Neurontin 14. Clindamycin
15. Cephalexin 16. Levsin sublingual 17. Elmiron 18.Doxcycline 19. Lortab 7.5/500 (the lower doses will not work for this)
I THINK that is all.
Current medications are:
1. HCTZ 1 q.d. am
2. Nexium 1 q.d. am
3. Premarin Cream every other day
4. Lortab 7.5/500 every 4-6hrs

Over the last weekend, this irritating pressure was about to drive me insane. BTW, that is the description of this, it is NOT pain, it is a BAD irritating pressure feeling, anyway, I had just about had it by Sunday, I just couldnt deal with it anymore and had basically been crying with this since Saturday. It gets to where something of this nature takes a toll on you mentally.

This is what all is worth noting about this "condition:"
1. Lying down stops this. Especially if I lay on my left side and throw my leg sorta over towards the edge of the bed. This feeling will be completely gone within 5 minutes.
2. When I get up at around 8 AM, I dont have this feeling. It starts showing up gradually over the course of the day. Around 1PM is really when it starts getting out of control. By 3 PM even worse, and so on.
3. Nothing that I eat or drink has any bearing on this feeling. Although, on the rare occassion that I have a couple of either mixed drinks or wine, by the 2nd one this feeling is gone. So, for some reason, alcohol numbs this even though I am not drunk.

I know this is a LONG email, but, I am hoping that someone out there has been in my shoes and was cured and can give me some guidance since I am getting to the point of despiration with this. I have literally considered suicide! I am 42 years old and just dont know what else to do to try and fix this. Thank You So VERY much, Sincerely, prostitch

 
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Old 03-02-2008, 08:13 AM   #2
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Re: Chronic UTI with no relief in sight! please help!

Prostitch,

What your going through sounds absolutley misserable! I have my own bladder issues and I'm Not well verced in this condition, but look up a condition called "IC" (Interstitial Cystitis) its a "bladder Pain syndrome", it may have nothing to do with what your suffering, or it MAY be what you have, I havent read about it in a long time, but think it may be worth you looking into that?
I have been through dealing with the medical community with MANY issues, and have learned that WE are our OWN BEST ADVOCATES! We know our bodies better than anyone else, including Doctors! I went through MANY MANY Doctors over the years, and have learned that there ARE good doctors out there, Just FEW and FAR BETWEEN! I ended up at a major medical facility before I ever got the answers and finally diagnosed! I've also discovered that Female Doctors seem to have more compassion when it comes to Female issues. Not that there arent good Male Doctors out there, but has just been MY experience when it comes to the GYN or Bladder issues.
DONT GIVE UP! Your WORTH the effort to GET those answers! And diserve to be pain free!
What I find interesting about your condition is the "positional" change can take the pain away. That tells me that its an anatomical issue. Meaning that when your standing or sitting, your bladder is obviously in a different position then when your lying down. It could be a nerve issue involved? The bladder it self COULD be fine, BUT the NERVE May NOT BE? The fact it DOES go away when your lying down on your left side. I can remember being told that when your pregnant lying on your LEFT side causes less pressure on the bladder. Not suggesting your pregnant, but that anatomicly , different positions mean something. I know you've been through MANY Doctors already, BUT DONT give up, Your WORTH it GIRL!
Try a Major Medical Facility if you possibly can!

I really wish you the best, and will say a Prayer you too, FINALLY GET SOME ANSWERS !

Take care and GOd bless,
Annette

P.S. Please let us know how you make out!

 
Old 03-02-2008, 01:20 PM   #3
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Re: Chronic UTI with no relief in sight! please help!

I have had recurring UTI's since 1990 on and off. Lately on again. Have you had a Urodynamics done? I never get burning. I get pain and pressure. Did you see the GYN also? Sometimes you can have a fibroid or cyst pressing on your bladder. Not that it would cause the infection but in my case I would go and the bladder would not empty all the way and that is how the infection gets started. In my case anyway. Maybe a bit personal but you have to wipe back to front. Urinate right after sex. Sometimes take an antibiotic right before or after sex as a preventative. There are all sorts of things. You probably tried most of them. Sometimes you need to take an antibiotic long term. I was given Cipro for so long that it doesn't work for me anymore. I usually get Levaquin or Bactrim. I also have blood in the urine so they did a million tests to make sure it was nothing.

Hope this helps a little. Feel better.

 
Old 03-03-2008, 07:29 PM   #4
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Re: Chronic UTI with no relief in sight! please help!

I can so relate to your problem. I have it too. I've been having problems for almost a year now. Constant UTI's. Sometimes I have them..sometimes I don't. I've been on a ton of antibiotics, too. Every single OAB medicine. My bladder has been checked and it's normal. But I continue to suffer with spasms and pain all day long. It could be hormone related. Urinary issues are common with decling estrogen. I've recently started the pill and am using vagifem to help get estrogen back to that area to thicken things up. Once that area starts to thin it can cause all kinds of frequency issues. This has been a nightmare for me. It's affected my work and my life now. I'm getting used to it and that is the sad part. I notice that it's worse in mid day for some reason. But I take pain meds to ease the spasms and the pain. It's the only thing that seems to help me right now. It could be endometriosis, too. I've been told I have a UTI..then I get a call from my doctor saying I don't have one. I'm at my wits end with this. I do think it's hormonal for me.

Feel free to vent any time.
,

 
Old 03-03-2008, 07:33 PM   #5
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Re: Chronic UTI with no relief in sight! please help!

Another thing I want to add. When I walk I seem to have more problems. If I'm sitting down I feel much better. But I can't walk long distances without my bladder hurting or feeling the urge to go. I don't know if that means anything.

 
Old 03-03-2008, 08:38 PM   #6
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Re: Chronic UTI with no relief in sight! please help!

prostitch,

Unfortunately, your symptoms are very, very familiar.

To make a long story short, you might want to get an MRI of your lower back. Compression of the nerve roots in the lower spine can cause your identical symptoms. A ruptured or herniated disc can be the culprit as well as a tarlov cyst in the lower spine. I had and have your identical symptoms, but now my pain starts in the morning shortly after I get out of bed.

I recently had a laminectomy to clean up a disc that was compressing the S-1 nerve root and that eliminated my pain for the first 4 weeks or so. My surgeon said if the pain continued following the laminectomy, then more than likely it would be because of the tarlov cyst that surrounds the S-1 nerve root in my case. Tarlov cysts are extremely difficult to treat and there are only 2 surgeons in the country that will operate on them.

Your relief of pain while laying on your left side also is a symptom many tarlov cyst patients have, as do I. You can find some good information on a tarlov cysts by googling it.

It's amazing that urologists don't connect bladder problems with back issues....but they are taught about the bladder itself evidently and leave the back for the other specialists.

Lyrica is good for the nerve pain in the interim....providing you can function with a fuzzy head at times.

Percocet, Enablex, Flomax and muscle relaxers are my meds at the present...after I get through my busy time at work, I will then pursue the cyst issue further.

I know you are in extreme pain. My thoughts and prayers are with you!

Cathy

Last edited by frb1591; 03-03-2008 at 08:39 PM.

 
Old 03-03-2008, 08:46 PM   #7
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Thumbs up Re: Chronic UTI with no relief in sight! please help!

Hi Pro

I have had several UTI over the years. Something that has really helped me is drinking a glass of cranberry juice everyday. My prayers are with you.

Nadine

 
Old 03-03-2008, 09:29 PM   #8
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Re: Chronic UTI with no relief in sight! please help!

prostitch,

After re-reading your original post, I saw that you had already tried Lyrica. Just one thing I want to add, by all means get your gp to prescribe you an anti-depressant if you are not already on one. Cymbalta and Lexapro are 2 that are susposed to be good for both nerve pain and depression. Even thoughts such as "I would be better off dead than if I have to live the rest of my life with this" are actually termed suicidal thoughts and are nothing to play around with.

I went for a long time before I labeled my "pain" as pain. My gp would ask me to describe "it" and I would tell him to imagine he drank a couple cases of beer and was not able to urinate...that was the closest similarity I could think of. Now, I call it excruiating, unbearable pain...sort of like a horrific bladder spasm...like your bladder is being squeezed and twisted at the same time...PAIN!!

 
Old 03-06-2008, 07:09 PM   #9
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Re: Chronic UTI with no relief in sight! please help!

i had a horrible UTI that anti-biotics could not cure, i went homeopathic and got rid of it...

when you HAVE the infection every day take : 6 cranberry pills (DONT drink the juice.. sugar makes the infection WORSE) taken one every hour: 6 -500 mg Vitamin C (again every hour) 3 -grape seed extract pills daily (4 hours apart) 20 drops of Silver ( u get this at health food stores.. 30 drops is too much, start off w/ 10 a day then go to 20 a few days later ) (10-twice a day) and 4-Echinachea pills (every 4 hrs) .. i know this seems a lot but do this for 4-6 days and my infection (that i had almost non stop for 2 months ) WAS GONE! of course lots and lots of water but remember NO SUGAR!! sugar is the enemy

when you dont have an infection: 3-cranberry pills daily : 2-500 mg Vitamin C daily 3- Grape Seed Extract pills daily =))

i wish you all well.. this worked EXTREMELY well for me, go to a good health food store and talk to someone who knows what they are doing !! god bless

 
Old 03-06-2008, 07:12 PM   #10
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Re: Chronic UTI with no relief in sight! please help!

i posted a message... go homeopathic.. stick w/ it and see if it works for you =))

 
Old 03-14-2008, 03:57 PM   #11
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Re: Chronic UTI with no relief in sight! please help!

Have any of you ever tried UTI-Clear? It's an herbal drop you add to water that has completely changed my life (I know that sounds cliche, but true in this case!). I had chronic UTI's for about 3 years and finally found this on amazon. It might not work for everyone, but if antibiotics aren't working for you anymore I'd say it's definitely worth a shot!

 
Old 03-26-2008, 03:52 PM   #12
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Re: Chronic UTI with no relief in sight! please help!

I'm wondering if you could have bladder prolapse. Look it up on a medical site. The fact that you lay down and it subsides and the fact that it gets worse as day goes on and gets worse with standing makes it sound like it. That can be very uncomfortable. I have a small bit of it. I discovered it because there was a protrusion in the front wall of my vagina and I could feel it. You may want to check it out. You'd think with seeing doctors, etc. someone would mention it if you did but that is not always the case.

Especially since you talk about pressure and not pain, I've heard it said people with prolapse feel as if they are sitting on a small ball and I know that pressure was really the thing that led me to diagnosis.

However, don't let anyone rush you into surgery if you are diagnosed with this. Kegels are helpful, (there is even a device called Kegelmaster that makes them more effective and has helped lots of women) and losing weight if you are overweight, etc.

Last edited by beluvdlily; 03-26-2008 at 03:57 PM.

 
Old 04-04-2008, 01:14 PM   #13
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Re: Chronic UTI with no relief in sight! please help!

Prostitch,
I know exactly how you feel!!!!!! It's been 6 months from the start of this nagging pressure in my pelvic! Two OB's said it was prolapsed uterus and one urogynecologist said it was prolapsed uterus, cystocele(sagging bladder) and rectocele(sagging rectum). Later the urogyno says it's IC! All I know is that the only thing that helps sometimes is pain killers or laying down. If I sit for 15 minutes the pain returns and drives me crazy! Yesterday I started Pelvic floor therapy! I don't see how it would help but I'm grasping at straws! My husband and children are so frustrated with me and this pain! I hope we both can get to the bottom of this!
Best wishes,
Aleet

 
Old 04-14-2008, 10:51 PM   #14
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Re: Chronic UTI with no relief in sight! please help!

I have been suffering from what appears to be UTIs for over 12 months now. I am 40 this year. I have been bleeding from the urinary tract and have been in hospital in shock several times. Now I am suffering severe pain all of the time, constant pain that keeps me awake at night. My urine tests either come up clear or say that there are pus cells but no UTI or bacteria. I have been complaining to doctors for ages to no effect. They just don't seem to be able to help me. I have also tried naturopathic advice and that has not helped either. I have also become suicidal like yourself and I have a small baby and two other children to care for. I have no idea what I am to do. I was thinking of going to a urologist and getting all those things done that you did but obviously that will take me nowhere. You would think that with so many women with the same problem they would have worked out what is causing it by now!!!

 
Old 04-14-2008, 11:28 PM   #15
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Re: Chronic UTI with no relief in sight! please help!

This is so weird, I was in the E.R. Sunday because I thought I had a uti, which I called the Dr. for on Sat. & prescribed Cipro & Pyridiumn. I just had this at the beginning of Feb. too. I can't get comfortable when I lay down. Friday night I started with pressure, then I was about having a panic attack thinking gosh I can'at go through the pain I had in Feb. I have a pain that shoots down my left lower back. I was up all night Saturday night, after taking Cipro just for the day. When I went to the E.R. they told me it was a pinched nerve, gave me percoset. I had a hysterectomy last yr. also had my bladder tied up then.

jill60

 
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