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Old 09-17-2011, 12:42 PM   #16
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Smile Re: Constant feeling of having to urinate

Quote:
Originally Posted by Gramshe View Post
I want to know how you got to see other Dr. My husband has been going through the same thing as you but when he got a referal from his Primary Dr. to see another urologest he was told that she couldn't see him for 90 days after the last treatment he had from the one who did his surgery. Since his current one did a third procedure on the 17th of Aug. Then the new one can't see him until Nov.21. They said this is the law. If this continues he will be in a very deep state of depression by then. He is now. Has anyone heard of this law?
I have certainly never heard of a law like this in the US. It makes no sense. Maybe it is the type of insurance your husband has? I had Anthem Blue Cross insurance when I was dealing with all of these problems, and I was able to see as many doctors as I wanted whenever they had appointments available. I don't know anything about what your husband has going on or what type of surgery he had, but make sure he has his prostate checked out. Prostate infections can cause urinary symptoms in men. Good luck. Let me know if I can answer any more questions. I know how miserable and depressing these issues can make a person, but tell him not to give up hope! It took me over 2 years to really figure out what was wrong with me, and I was miserable and depressed that whole time, but now I have my life back and can smile again

 
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Old 10-13-2011, 06:23 PM   #17
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Re: Constant feeling of having to urinate

I have very similar issues. With both the need to urinate, which started off as my only symptom, and then later on with the inguinal pain as well, which sometimes moves into my abdomen. Did you have any luck as you continued to see doctors?

 
Old 10-15-2011, 02:20 PM   #18
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Re: Constant feeling of having to urinate

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Originally Posted by miked01 View Post
I have very similar issues. With both the need to urinate, which started off as my only symptom, and then later on with the inguinal pain as well, which sometimes moves into my abdomen. Did you have any luck as you continued to see doctors?
Hi,

I had no luck with doctors at all. I saw 5 different doctors and had all of their expensive tests done and it just ended up being a waste of my time and money. They found nothing wrong with me. I ended up diagnosing myself in December of last year with something called cytolytic vaginosis. One day I decided to just start from scratch and search online for problems that cause my symptoms. I got lucky, and finally found a rare problem that perfectly described my symptoms. Only then did I go back to a gynecologist and have her verify my diagnosis.

My advice would still be to try to see as many different doctors as possible. Maybe you will get luckier than I did. But also, remember that YOU have to take responsibility for your own health. No one cares about your health as much as you do, and no one will work as hard to diagnose and treat your problem as you will. The internet was a lifesaver for me. After over 2 years of suffering and going broke paying for medical tests and doctors that got me nowhere, ultimately it was me and the internet that found out what my problem was. So search the internet for your symptoms & their possible causes... then go to different doctors armed with that information and make them test for every possible diagnosis you have found online.

Goodluck. I hope you get answers more quickly than I did. Let me know if I can answer any more questions.

 
Old 04-19-2012, 02:21 PM   #19
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Re: Constant feeling of having to urinate

just wondering how you're feeling now?

 
Old 10-18-2012, 05:14 PM   #20
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Re: Constant feeling of having to urinate

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Originally Posted by kris447 View Post
Hi,

My diagnosis ended up being cytolytic vaginosis. My symptoms were extremely similar to yours, so you should look into this possibility. It's an overgrowth of lactobacillis (the "good" bacteria) in the vagina. The treatment is baking soda sitz baths, which have given me my life back! I also had to stop taking probiotics and stop eating yogurt. It's much easier to deal with than a urethral diverticulum would have been... and that's one thing I also thought I may have had when I was searching for answers. But I had an MRI that showed no problems. I would suggest researching cytolytic vaginosis & trying baking soda baths if your symptoms fit. After 15 minute baths daily for about 10 days I started to feel so much better! Good luck and let me know if I can answer any more questions.
Hi,

My problems are exactly like yours. Do you also flare after sex? It's a nightmare for me. I also have a milky discharge (no odor) from vagina which gynos find normal however I know it's bothering me because my problems occur either after i pee or either this discharge contacts my urethral opening and vulva. As long as im laying down, im fine. Also I used a vaginal capsule called Donaxyl and i swear i was healed %100. The discharge disappeared as well. However a few weeks later it was back. However no pain..just the discharge so had sex and back to nightmare. My boyfriend is still with me with lack of sex anyway...my vaginal cultures show a lot of lactobilissis. I'm curios, how are you doing? Did you solve your problem? and there are 2 sicknesses, the one you are talking about CV and also lactobolissis. Very hard to differentiate. Does the baking soda help?

 
Old 10-19-2012, 01:20 PM   #21
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Re: Constant feeling of having to urinate

Yes, it's always worse after sex. And the discharge is a symptom of both cytolytic vaginosis and lactobacillosis. I don't know anything about Donaxyl, and I couldn't find anything about in online that was in English... you must live outside of the US? But if it helped you and made your symptoms and discharge go away, it probably killed off a lot of the lactobacillus. If your vaginal cultures show nothing except lots of lactobacillus, baking soda baths will help you tremendously. I am doing great. I just take baking soda baths whenever I start to notice a bit of irritation, which is usually after having sex & also during the second half of my monthly cycle. So the problem is not completely gone, but it is very manageable & no more than a minor inconvenience now. This is major improvement since it used to control my life!

Yes, there are actually 2 separate conditions, one called cytolytic vaginosis and another called lactobacillosis. Essentially, they are the same thing... an overgrowth of lactobacillus. The difference is that in cytolytic vaginosis there is so much lactobacillus that it actually starts to destroy the vaginal tissue, which causes pain. So they're really just the same problem, but I think cytolytic vaginosis is essentially a very advanced form of lactobacillosis.

Anyway, I would STRONGLY recommend the baking soda baths. You can look up how to do baking soda sitz baths online. You'll need to make them pretty strong (only a couple inches of water and a good amount of baking soda). You can also make a paste with baking soda and water & put it directly in the vagina & on the vulva. But this was way too strong for me when I tried it & actually ended up causing me to have more irritation for a while after doing it. So be careful with that. You'll have to give the baking soda baths some time to work. You can take them 2x a day if you have time to do so. I just did them once a day and finally started feeling much better after taking baths about 10 days in a row. Also, you should try not to use tampons if you can avoid it. Blood is very alkalizing and will kill off a lot of the lactobacillus during your period, but it works better without a tampon there to absorb it.

Also, you should avoid eating anything containing lactobacillus, such as yogurt, sour cream, or probiotic pills. Your body has too much lactobacillus already, so you don't want to give it any more.

Good luck. I know exactly what you're going through and how frustrating and depressing it can be. But believe me, there are far worse problems you could have. This one is actually quite easy to treat once you get it under control. Let me know how it goes & feel free to ask me any other questions you come up with. I'm always happy to help someone else try to get rid of this terrible problem and get their life back!

Quote:
Originally Posted by lujimar View Post
Hi,

My problems are exactly like yours. Do you also flare after sex? It's a nightmare for me. I also have a milky discharge (no odor) from vagina which gynos find normal however I know it's bothering me because my problems occur either after i pee or either this discharge contacts my urethral opening and vulva. As long as im laying down, im fine. Also I used a vaginal capsule called Donaxyl and i swear i was healed %100. The discharge disappeared as well. However a few weeks later it was back. However no pain..just the discharge so had sex and back to nightmare. My boyfriend is still with me with lack of sex anyway...my vaginal cultures show a lot of lactobilissis. I'm curios, how are you doing? Did you solve your problem? and there are 2 sicknesses, the one you are talking about CV and also lactobolissis. Very hard to differentiate. Does the baking soda help?

 
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Old 10-21-2012, 04:01 PM   #22
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Re: Constant feeling of having to urinate

Hello Kristy,

Thank you so much for your reply. I meant to reply it earlier but now that i feel good for the last few days, i tried to take care of the things outside of my apt like shopping etc. Unbelievable but i've tried baking soda even before i wrote here upon reading your posts and i guess it's working. I dont have a bath, i have a shower so what i did was putting the mix in a little bottle and spray it in the shower. One time I did it a bit too much i think, and tried to wash a little more towards inside the opening and ahhhh it was a bad bad day. But the next day i got better, better and better. So i kept washing one day with baking soda (not like that one time which caused me pain) and then i rinse it a bit with hot water..(HOT MAKES ME FEEL SOOOO GOOD)..and then one day i wash it with regular hot water. So far there is still irritation but really very very little (yesssss )) and the discharge seems to disappear. I told my gyno about this and she said this might be it, too much good bacteria and she told me to wash with apple vinegar (??!!) isnt this supposed to create good bacteria and kill the yeast? im confused, can we also use apple vinegar?
im so happy to see a few people including you has searched so much as much as I did. I was hopeless then i brought the clues together, took me 1.5 years old, tons of tests, a lot of money spent on ignorant doctors, depression, job loss (now im pursuing a different career), and a weak stomach with acid reflux. I feel like my body is full of ACID. I might be growing an alien inside if we dont laugh, how can we cope with this right? anyway, im also drinking baking soda because my stomach is developing too much acid...thanks to the doctors who gave me antibiotics and when i told them im having acid reflux, they said KEEP TAKING..i did not..as a result of 2 pills of monodox, i had to start nexium and once you are on nexium, it's very hard to leave because your body wants this medicine to keep the acid balance. This medicine companies are monsters!!! (not all) Now that we are talking about medicine, it's time to talk about this Donaxyl tablet i used. Yes i live in Europe and English is my second language (sorry for grammar mistakes)... here is the ingredientsequalinium Chloride...i guess it's good for gram negative and positive bacterias, yeast and trischomonas (although i am negative for all). i searched it, here it is:Fluomizin - Flu omizin is used for the treatment of vaginal infections. It exerts its action locally within the vagina. Marked relief with regard to discharge and inflammation generally occurs within 24-72 hrs. Indications: vaginal infections

I will let this baking soda showers go for a while and if i continue to feel good, i will try some action in bed to see if i will again be sick.

QUESTIONS:
1) How come good bacteria causes urination problems? why did it happen after a UTI? (i actually used lactobolisis vaginal tablets after the antibiotic because the doctor has asked). After sex I have a hard time starting urine...it's like prostates in men. Then burning...days and days...ah God it gives me the chills even to think about it. It continues for months..I was suspicious of a skene's gland infection. What do u think about this?

2) What about augmentine ?

Looking forward to hear from you..

Last edited by moderator2; 10-21-2012 at 04:13 PM.

 
Old 10-22-2012, 02:03 PM   #23
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Re: Constant feeling of having to urinate

Hi,

I'm so glad to hear the baking soda is helping you. It definitely can sting a little bit if you use too much, but I always take that as a sure sign that it's working. I would suggest you keep doing what you're doing. Eventually you shouldn't have to use the baking soda as often.

I would NOT suggest using apple vinegar. I have no idea where your doctor came up with this. But vinegar is very acidic, and you already have too much acidity. Stick to the baking soda, which is alkalizing.

Like you, It took me way too long to figure out what my problem was. I suffered through 2.5 years of tests, doctors visits, and medical bills, all for nothing. Then one day I decided to start from scratch & just search for my symptoms on the internet to see what could be causing them. I happened to get lucky and come across the cytolytic vaginosis diagnosis, which fit my symptoms perfectly. I immediately went to the store and bought a big box of baking soda.

Yes, it definitely helps to keep a sense of humor about this! If you feel like your entire body is too acidic, you're probably right. I also had digestive issues when I was at the peak of my cytolytic vaginosis misery. But I was taking probiotics, and as soon as I found out I had too much lactobacillus, I stopped taking the probiotics (which contained 5 different species of lactobacillus). That solved my digestive issues. But you could keep drinking the baking soda mixed with water, that should help you. You should also try sticking to very alkalizing foods for a while (lots of veggies mostly), and avoid acidic foods like tomatoes and oranges. You could even buy some pH test strips if you wanted to. You can pee on them to see how acidic your urine (& thus probably your whole body) is. I followed an alkalizing diet very strictly for 8 weeks when doctors told me I had interstitial cystitis. I would pee on the pH strips every time I went and if my urine was very acidic I would make sure to eat more alkalizing foods.

I think antibiotics could be part of what causes this bacterial imbalance. Maybe you and I took too many antibiotics prescribed by doctors (I know I did), and our bodies started making more lactobacillus to try to balance everything out. You're right though... most of these prescription medicines are bad and cause more problems than they solve. The donaxyl tablets you used probably killed off a lot of the lactobacillus you had at first and made you feel a bit better. But then the lactobacillus eventually comes back and you feel worse again. I went through this a lot with different antibiotics I was on. I would feel better for a couple days when I first started a new antibiotic, and then after a couple days I would feel even worse than before.

To try to answer some of your questions... I think the lactobacillus causes urinary symptoms because there is just way too much of it. The lactobacillus actually starts to destroy the vaginal tissue once there is way too much of it. Since the urethra & glands are right up there in the vagina, they also get red, sore, swollen & damaged by the lactobacillus overgrowth. This is my theory anyway. As for why it happened after a UTI, my guess is that the imbalance was caused by the antibiotics they gave us for the UTI. At one point I thought I had a skene's gland infection too. I went on a 12-week course of doxycycline antibiotic because this is what I read was effective in treating a skene's gland infection. No surprise, it only made my real problem worse. I really think the glands just become swollen & sore when there is too much lactobacillus around. But I think the problem is outside the glands, not inside.

Augmentin is just another antibiotic. If I was you, I would stay away from all antibiotics, and all prescription drugs completely for a while if you can. I have had better results just educating myself on the internet, using baking soda baths, eating a healthy diet, taking supplements & seeing my naturopathic doctor from time to time. So that would be my recommendation. I have given up on conventional medicine & doctors. All they do is take your money & give you prescription drugs.

Let me know how it goes & if I can be of any more help. Again, I'm so happy to hear that you're seeing improvement in your condition!

Kristyn

Quote:
Originally Posted by lujimar View Post
Hello Kristy,

Thank you so much for your reply. I meant to reply it earlier but now that i feel good for the last few days, i tried to take care of the things outside of my apt like shopping etc. Unbelievable but i've tried baking soda even before i wrote here upon reading your posts and i guess it's working. I dont have a bath, i have a shower so what i did was putting the mix in a little bottle and spray it in the shower. One time I did it a bit too much i think, and tried to wash a little more towards inside the opening and ahhhh it was a bad bad day. But the next day i got better, better and better. So i kept washing one day with baking soda (not like that one time which caused me pain) and then i rinse it a bit with hot water..(HOT MAKES ME FEEL SOOOO GOOD)..and then one day i wash it with regular hot water. So far there is still irritation but really very very little (yesssss )) and the discharge seems to disappear. I told my gyno about this and she said this might be it, too much good bacteria and she told me to wash with apple vinegar (??!!) isnt this supposed to create good bacteria and kill the yeast? im confused, can we also use apple vinegar?
im so happy to see a few people including you has searched so much as much as I did. I was hopeless then i brought the clues together, took me 1.5 years old, tons of tests, a lot of money spent on ignorant doctors, depression, job loss (now im pursuing a different career), and a weak stomach with acid reflux. I feel like my body is full of ACID. I might be growing an alien inside if we dont laugh, how can we cope with this right? anyway, im also drinking baking soda because my stomach is developing too much acid...thanks to the doctors who gave me antibiotics and when i told them im having acid reflux, they said KEEP TAKING..i did not..as a result of 2 pills of monodox, i had to start nexium and once you are on nexium, it's very hard to leave because your body wants this medicine to keep the acid balance. This medicine companies are monsters!!! (not all) Now that we are talking about medicine, it's time to talk about this Donaxyl tablet i used. Yes i live in Europe and English is my second language (sorry for grammar mistakes)... here is the ingredientsequalinium Chloride...i guess it's good for gram negative and positive bacterias, yeast and trischomonas (although i am negative for all). i searched it, here it is:Fluomizin - Flu omizin is used for the treatment of vaginal infections. It exerts its action locally within the vagina. Marked relief with regard to discharge and inflammation generally occurs within 24-72 hrs. Indications: vaginal infections

I will let this baking soda showers go for a while and if i continue to feel good, i will try some action in bed to see if i will again be sick.

QUESTIONS:
1) How come good bacteria causes urination problems? why did it happen after a UTI? (i actually used lactobolisis vaginal tablets after the antibiotic because the doctor has asked). After sex I have a hard time starting urine...it's like prostates in men. Then burning...days and days...ah God it gives me the chills even to think about it. It continues for months..I was suspicious of a skene's gland infection. What do u think about this?

2) What about augmentine ?

Looking forward to hear from you..

 
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Old 10-31-2012, 07:05 PM   #24
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Re: Constant feeling of having to urinate

I am having the same problem right now. I had a uti and my urine shows clear now but my symptoms never went away. I feel the constant urge to go to the bathroom. It is driving me crazy, I feel like I want to crawl out of my skin. I just saw a urologist this week so I just went for an ultrasound of my kidneys and bladder today. I just don't understand because I have had utis all of my life and the symptoms went away in a couple of days after starting meds. I'm wondering if you have any updates or successes as of yet?

 
Old 11-01-2012, 01:20 AM   #25
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Re: Constant feeling of having to urinate

Hi RaeP - sorry to hear how you have been feeling. I have been there and it was NOT fun.

Have a look through my posts, as your story sounds a bit like mine.

I only ever had one symptom - feeling like I needed the toilet all the time - and that came about from a UTI. After we treated it with antibiotics, the sensation just didn't go away.

I am now 100% better and have been for over 18 months.

Have a read of my posts and if you want any more details, or a sympathetic ear, then let me know.

Jenny

 
Old 11-01-2012, 06:22 AM   #26
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Re: Constant feeling of having to urinate

Thanks for replying back. That is awesome that you are fine now. I hope to be there soon too because in this short period of time that I have been going through this it has taken over my life. I am completely miserable with the constant feeling. I am hoping that mine is just an irritation or something from the uti as yours was. It just seems so odd that I have been getting utis for 20 years and this is the first one that has ever acted this way.

 
Old 11-01-2012, 08:11 AM   #27
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Re: Constant feeling of having to urinate

Hello Kristyn, I'm in USA now...constantly busy...shooting a film, packing and dealing with jetlag. I'm feeling better now. I'm on my period so no pain at all. But once it finishes i feel the irritation again but it's not unbearable. My pharmacist recomended me a oustropath, homeopath and neuropath..he is all of them. He talked to me on the phone (i will see him when i go back home) he asked me questions like "do u have heartburn, do you have gas, do your gums bleed and hurt once in a while,is the area below your chest very small? and then he said my immune system is *ucked up..and i need to use yoghurt on my vagina and i need to eat healthy, 9000mg of omega3 that will gradually go down mg wise..and something called colustram (i dont remember exactly), cranbery pills, vitamine D and lactobillisis tablets. I'm just scared because he didnt understand the part about growing too much good bacteria, he keeps telling me my good bacteria is gone..anyway..will update you guys.

 
Old 11-02-2012, 07:20 PM   #28
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Re: Constant feeling of having to urinate

Hi,

I wanted to let you know that this is exactly how my symptoms started too. I had a UTI that went away with antibiotics, but it still felt like I had to pee all the time. My problem ended up being an irritated urethra from cytolytic vaginosis. I think the antibiotics I was on for the UTI caused an imbalance of the good bacteria in the vagina, which is what cytolytic vaginosis is. After about 1 year of feeling like I had to pee all the time, my symptoms got worse and I just felt irritated, itchy, raw & burning down there all the time. But all my tests kept coming back normal. Finally over a year after that I figured out it was cytolytic vaginosis and not any of the other awful things doctors had been telling me it was (like interstitial cystitis). Anyway, after finding out what I was dealing with, the recovery was pretty quick. I took baking soda sitz baths daily and in about 10 days I saw major improvement. Now I just take the baking soda baths from time to time when I start to feel that irritated urethra feeling or get a little itchy down there. Other than that, my life is back to normal! You should look into the cytolytic vaginosis diagnosis as a possibility... goodluck & let me know if I can answer any questions.

Quote:
Originally Posted by RaeP View Post
I am having the same problem right now. I had a uti and my urine shows clear now but my symptoms never went away. I feel the constant urge to go to the bathroom. It is driving me crazy, I feel like I want to crawl out of my skin. I just saw a urologist this week so I just went for an ultrasound of my kidneys and bladder today. I just don't understand because I have had utis all of my life and the symptoms went away in a couple of days after starting meds. I'm wondering if you have any updates or successes as of yet?

 
Old 11-02-2012, 07:31 PM   #29
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Re: Constant feeling of having to urinate

Hi there,

I don't know about this doctor you talked to. I would NOT put yogurt on your vagina or take lactobacillus tablets. You already have too much lactobacillus, why would you want more?? I'm convinced that the lactobacillus tablets I was taking (before I knew what was wrong with me) made my condition much worse. I don't want that to happen to you too. I don't think he understands what your problem really is. I would try to explain to him again what your problem is and why you don't think the yogurt and lactobacillus tabs are a good idea. If he still doesn't get it, you should keep looking for a better doctor. If you're ever in Denver, Colorado USA, I have a good women's health naturopathic doctor I can recommend. For now, just use your head & don't do anything a doctor tells you to do unless you agree with them.

Kristyn

Quote:
Originally Posted by lujimar View Post
Hello Kristyn, I'm in USA now...constantly busy...shooting a film, packing and dealing with jetlag. I'm feeling better now. I'm on my period so no pain at all. But once it finishes i feel the irritation again but it's not unbearable. My pharmacist recomended me a oustropath, homeopath and neuropath..he is all of them. He talked to me on the phone (i will see him when i go back home) he asked me questions like "do u have heartburn, do you have gas, do your gums bleed and hurt once in a while,is the area below your chest very small? and then he said my immune system is *ucked up..and i need to use yoghurt on my vagina and i need to eat healthy, 9000mg of omega3 that will gradually go down mg wise..and something called colustram (i dont remember exactly), cranbery pills, vitamine D and lactobillisis tablets. I'm just scared because he didnt understand the part about growing too much good bacteria, he keeps telling me my good bacteria is gone..anyway..will update you guys.

 
Old 11-05-2012, 10:47 AM   #30
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Re: Constant feeling of having to urinate

It is amazing that after all of the doctors and tests that you had done and for the amount of time that you struggled you were diagnosed, treated, and felt better within 10days! I am feeling so frustrated and sad about this entire thing right now. I see the urologist again tomorrow for a cystoscopy. The only symptom that I have is the urge to urinate and it seems to range from mild to super strong throughout the day. No rhyme or reason to it. I just want this all to be over with. Did your doctor ever prescribe you any of the overactive bladder meds?

 
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