feeling helpless!

Posted , 18 users are following.

i really hope someone has a similar situation to myself, i feel so lost and helpless.  [sad]

i am a 26 year old female, with constant urges to go to the toilet all the time, especially at night in bed. it wakes me up and when i go hardly anything comes out. this began around two years ago in australia. the doctor put me on tablets for a urine infection, even though my urine sample came back all clear. the problem persisted and i was going to the toilet around 5-7 times a night. i returned to the doctor and he put me on ditropan. if anything, it made things worse...when i really had to go i couldnt, and i really had to push to void, which ended up hurting.

i then visited another doctor in australia, who was lovely and said we would get to the bottom of it.she took a few urine samples and blood samples to check for basics like diabetes. everything came back normal.

i was then sent for an ultrasound and told to fill my bladder full. everything came back normal. the doctor then put me on 5mg of vesicare. at this point i returned to scotland and took all my paperwork with me.

i saw my GP when i returned and gave all my paperwork. another urine sample was taken and it came back negative. i was then referred to a urologist. another ulrasound and a void test was done as well as another urine sample taken. 

i then got booked in for a rigid cystoscopy and urethral dilatation. i was put to sleep and nothing was found. 

my symptoms were not pain, but discomfort...the feeling of needing to pee all the time was driving me nuts, and was worse round my period.

so,

i was then referred to a gynacoleogist where i had a general check and then had a laparoscopy. an early case of endometreosis was discovered and taken away. the doctor put me on the pill, but the symptoms are still  there.

my urologist then saw me again (this is about 4months later) and he said ill put you on vesicare, when i told him my problems were still there and i told him id been on it before and it didnt work. he said to still try it and see him in another 3months. i feel i was just blown off.

the feeling is down one side of my bladder more than the other, the right side...and can be worse if i know my bowels are filling up. its driving me nuts, makes me really upset and uncomfortable.

ive taken toilet diaries, tried staying away from certain spicy foods, caffeine, sodas etc

my GP tried me on movicol for some constipation in the hope the clearing of the bowels would eliminate the feeling to pee...but if anything it didnt work. i dont know where to go now  [sad]

the right side of my bladder feels inflamed, even if i hold my urine till really fool, when i pee my sides feel sore afterwards.

does anyone have similar situations? i feel so lost!

 

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  • Posted

    Hi ashleigh

    i am older than you, and i also had endometriosis in my early thirties and had it all lasered off, ( mine didnt return luckily ) 

    i can relate to your bladder sensitivity, but ditropan worked for me.. Only took it when felt the urge more than normal but actually no urgency at all feelings..

    could you be anxious, suffer with anxiety ? As this can also make it worse..

    seems all your tests are okay, so maybe its anxiety related ? 

    Even hormonal ? 

    Jay x

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    • Posted

      Hi jaynee,

      I did think it could be in my head or stress related. I don't feel anxious or stressed and it wakes me up from my sleep through the night?? How can this be. I can hold it at work when I need. I can hold fora 10hour shift I feel I really need but I am a waitress so the running about keeps me going. The ditropan didn't work for me. I feel it's just one side of my bladder though if that makes sense. The other side I don't feel any pressure or urgency. It's really weird. 

      It's so down heartening. I can't even enjoy watching a movie lying on bed without feeling uncomfortable. A hot shower can help calm it. But I feel I've been misdiagnosed with over active bladder. I don't feel I have that 

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    • Posted

      Hi ashleigh

      you should never hold in urine, as this can cause problems too, 

      have a nice hot water bottle in bed to comfort you ( with soft furry cover) 😊

      i would go back to doctor again and talk about it ..

      maybe your over thinking it all and causing yourself anxiety when your mind is not occupied.. I have done this myself..

      always make sure urine is straw coloured .. If darker or dark then your not drinking enough fluid, this can cause problems too ..

      cranberry juice is good to drink, or water, keep fluid intake good..

      jay x

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  • Posted

    hi, l had frequncy and soreness up side of my groin, right side worst, also lower back pain, also aggrevated with period, and causing ibs type symptoms, thrush thrown in for good measure, l had numerous urine samples taken, mainly neg, also blood tests normal, occassionally bit low on iron.  So it went on for years, sometimes think gps can put it down to non specific uretheritus, inflammation without known cause, re phycalogical, its that vicious circle, does anxiety stress cause the symptoms, or the symptoms cause or add to anxiety.  l eventually got referred to urologist, had xray, scan, also laprascope with gynacologist, but it was the cystascope and biopsy that brought diagnosis of intersticial cystitus, after years of it, but amitrip, cimetidine, l argine reduced symptoms by 90 percent, also reduced acid foods, which l dont seem to like acid fruits anyway, and   l was prescribed amitriptylene, which is commonly prescribed for as it reduces output it calms nerve ends, and helps with sleep, only needs small dose for bladder probs, l0mcg or less, also used as anti depressant in higher doses of 50m... which can leave some with hangover, l couldnt tolerate more than lomg..

    You could check on bladder sites also for info and advice, thank COB and B&B sites could advice, think some now use mannose b waterfall with good results, but think youve to order in special way. Although cystascope is usually good way of diagnosing probs, dont suppose its l00 percent.  Not all gps and urologists are up on all conditions, why l and many women went on for many years with symptoms which were dismissed as post op, hormonal, gynealogical, phycalogical, sometimes they can be caused by anxiety stress, but not always for everyone, 

    l resorted to paying for private consultation, about 80poouns  then, be double that now. Check out i.c. sites see if any other symptoms seem simular to yours, sometimes a different doctor can have more knowledge about symptoms. Hope you find cause soonx

     

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  • Posted

    Thanks for the response girls.

    ive tried everything! Hot water bottle....cranberry juice, lots of water, no water.

    i was going to go private for a second opinion. I'm moving to australia in two weeks so I'll pay over there. My gp thinks I have slight ibs too, I'm just worried to get my bowels checked because I lost my cousin to bowel cancer last year, and it came from nowhere. He was 28 when he passed. I know your bowels can put pressure on your bladder, and I told the doctor lumpiness can pop every now and then on the right side of my abdomen. I'm considering sleeping tablets to knock me out just to get some sleep at night. It's funny really...I've never wet myself it's just the discomfort. I have to sleep with a pillow in between my legs pushing up on to my crotch just to get comfy. 

    Its horrible sad 

    ive tried everything, honestly! 

    My neighbour is a food intolerance expert and she's even trying to help me find out which liquids and foods may be worse for me .

    because of all this too, it makes me uncomfortable and my sex life with my partner is affected. I love sex too haha but this makes me feel incredibly unsexy and my partner is so supportive but I hate that she has to suffer because of it. If it is anxiety I wonder if anyone has ever tried hypnosis??

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    • Posted

      lol, can also relate to the sex or lack of it, l also used to enjoy it, till ic when it caused discomfort and made me anxious it would aggrevate more, which it did, got down to once a month at most settled times, usually week before menustration, l was lucky also having a patient partner.  Wow moving back to oz, dont blame you, very hot there at present, l know someone in adelaide and they say its 39deg, and not at peak time yet, too hot for me, but would love a bit more sunshine, so envy you. My son,s been to Sidney and Melbourne, loved it. All private med over there, but if it brings diagnosis, main thing. Good luck. 
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  • Posted

    Hey. I didn't think anyone else had a problem as bad as mine until I just read this. My problem with frequent urination is very severe. I too did all the tests. They pumped water into my bladder and put a catheter in me. They also did the ultra sound. All tests came back with nuthing. This has been plaguing me since I was 18 yrs old. I'm now 33and haven't fixed the problem. I always feel uncomfortable. I can't enjoy a long drive, movies, dates, going out with frends. It runs my life and I can't take it anymore. The Ditropan made it worse. I became so frustrated when I was 23 I just decided to give up and live with it. Now I'm 32 and I'm going to give it another try with a new Dr. There is a surgery to fix it . But that means putting a pace maker like device inside u. I don't know if I could do something like that. I feel so sorry for u because I know exactly what ur going thru. I hate it so much. I just want to be normal again.
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  • Posted

    EXCESSIVE URINATION: SOLVED - MINIRIN 0.1mg

    Dear Ashleigh and all other sufferers of excessive/difficult urination. I have been suffering for 5 weeks with all of the symptoms discussed in this thread. I wa diagnosed with Overactive Bladder Syndrome after numerous ultrasounds, X-rays, and urine sample tests. All came back clear. I was prescribed Detrusitol which DID NOT WORK. It made me worse because I still felt the need to pass urine but.I couldn't. I was finally prescribed MINIRIN 0.1mg tablets, one tablet with breakfast and one with dinner. The very next day after first days doses my urination was less frequent. I gave now been taking this for 7 days and my urination has gone from every 30 minutes at night to once in 4 hours. I can actually sleep!! I am so relieved. Please go and ask your doctor about this. Good luck. Sandra

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  • Posted

    Hi Ashleigh

    I also live in Australia.

    I think like you I also just wish for a normal bladder.

    I do think that stress does contribute to the problem but it is not just stress.

     

    Perhaps you should consider trying some sort of anti depressant medication.

     

    It is just such a horrible feeling to go from being comfortable to suddenly having terrible painful cramp/spasm and desperately need to pee.

    Sometimes I can be only minutes away from a toilet and I just cannot hold on, the pain almost makes me cry.

    I can try almost anything to take my mind off needing to go pee and nothing helps not even the most pleasurable thing that you can imagine can stop you thinking of going to pee. (yes that is correct I can try having sex to distract myself but even that does not seem to work)

    I am a 55 years old male.

    I have painful urgency symptoms that just start randomly, when the bladder fills up, especially if it fills after drinking one or two glasses of liquid.

    I can only manage to hold 280-340ml urine and sometimes much less.

    If I drink a reasonable, not excessive, amount of liquid about 100-200ml/hour slowly (excluding caffeine containing drinks) during the day I develop frequency and need to pee every hour or 90minuntes.

    Sometimes I just get a bladder contraction and that results in wetting myself!

    The symptoms have been ongoing for over 7 years. I now have to get up at night between 2 and 5 times.

     

    I have tried bladder training/pelvic floor exercises but that does not seem to be of benefit.

    Tried acupuncture, Chinese Herbal medication but unfortunately they do nothing.

    Yoga also does not help.

     I have tried all sorts of oral fluid intake strategies. I have minimal or no caffeine containing drinks and minimal or no alcohol.

    I have tried Oxybutynin patches (Oxytrol) a few times- sometimes for over four weeks and sometimes for shorter duration and they do not seem to have any worthwhile effect.

    I have tried Betmiga ( a new expensive medication) also with no worthwhile benefit!

     

    About one month ago I had Botox injected into my bladder.

    It was a general anaesthetic so there was no initial discomfort, about three hours later when the topical anaesthetic also used wore off it was a bit sore to pee, but not too bad. Also peed a bit of blood initially.

    The Botox does nothing for about 2 weeks then should start to work. If only!!!

    I so wish there had been some improvement but unfortunately not.

    I still have the same urgency and frequency, I still can be quite comfortable and then suddenly just have to rush to pee. I still have the same poor bladder volumes!

    The Botox has made the force of the stream much weaker, now the pee sort of just trickles out. So it takes a bit longer to empty the bladder, but that is all that Botox has done for me.

     

    I would love to be able to say that it is fantastic, for me it is not. Apparently it works very well for 80% of people having it!

     

    So now what…?

    I can just live with what I have. But I am 55 and the thought of living another 40 or so years like this is rather depressing.

    I can try wearing a “nappy”

    I can try drinking “next to nothing” and just feel dehydrated and terrible, have headaches and possibly develop kidney stones.

    I can try having a sacral “neuro modulation” device implanted. This stimulates the nerves leaving the bladder and supposedly helps normalize neural activity between the bladder and the brain.

     

    I guess that my next best option is to try having the sacral neuro modulation device implanted.

     

     

    I suppose you should try the Botox and I really hope that it works for you- perhaps you will only need injections every 6-12 months.

    Good luck, I really wish you all the best

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    • Posted

      Have u tried hormones like Estrogen and Progesterone.

      If ur low on these hormones

      it weakens the area of the pelvis or bladder muscles so they do not work or can't hold up the bladder

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  • Posted

    Ashleigh have you had any answers? I suffer the same. Its not OAB because it never goes away. Its not a sudden urge it never goes. I started with these symptoms at 22 im 27 now with no answers. All my tests came back negative too.
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  • Posted

    Hi Ashleigh, 

    I want to know how are you as my wife if suffering from same problem and we have everything to cure it. 

    have you had any answers to your problems. if yes, please let me know so we can also try the same. 

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  • Posted

    For women!!! I had bladder pain for almost 20 years. Because of former bladder and kidney problems (as a child), I was told my bladder pain was due to everything from surgical adhesions to IC. Sex was terribly painful and I suffered for years -- even while going to every specialist available. I kept telling doctors that the only time I was pain-free was during pregnancy, so they chalked that up to hormonal changes -- again still saying that was associated with everything but the real reason. The real reason turned out to be that I have an extreme allergy to Nonoxynol-9. Even the smallest amount on condoms or the gels, or whatever it is on. Exposure once would put me in pain for days and days. Please ladies, if you are having bladder pain, please check if you are being exposed to Nonoxynol-9!

     

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