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!
1 like, 25 replies
jessicatooney ashleigh87804
Posted
Hi Ashleigh, I would really love to find out how you are doing now and If your problem has gone away. I am feeling completely helpless and don't know where to turn. I have had this problem for 9 months now, I constantly need the toilet 24hrs a day and find it hard to get to sleep as I feel so desperate for the toilet. I have been on antibiotics for overactive bladder and had about 20 test for infection which all came back negative. I had a ultrasound which was normal. I have had two eurodynamic tests and I have also had a urithrial dilatation which didn't work. I have no pain, just a constant strong urge to wee all the time. I am 25yrs old and I am a professional dancer, I am currently not working because of this problem. It's taking over my life and nobody seems to be able to help me and i just feel completely lost and depressed that it's never going to go. I would love to hear Back from you or anyone else just for advice or any reassurance from anyone that understands what I am going through. Thank you.
cassie_05344 jessicatooney
Posted
Hey Jessica like I suffered many years from this I'm 23 yearsold. For years I felt like I had no hope not knowing what was wrong with me finally I was diagnosed with over active bladder. I've never had a bladder infection in my life so they could never figure out what was wrong with me. I now see an amazing urologist who saved my life my pain is way down and I now have control on it. What they do for me is they inject Botox into my bladder it made world of difference I go every 3 months for it. Just know your not alone and if you ever need to talk feel free to message me if you like. I know where you are I felt like this I was the youngest patient of my urologist who had this it made me feel alone and I had know hope. With support from family and friends I got through it you can too ! Trust me I know what your going through.
jessicatooney cassie_05344
Posted
Hi Cassie thank you for your comment. I am happy for you that u you are feeling better and the Botox has helped you. I have heard of this but was told that any invasion will probably make it worse. But after your comment I will definitely consider it. Yes I am feeling nobody can help me and that I am the only one but now I realise I am not alone. Thank you for being kind and making me feel slightly better.
Karenwe cassie_05344
Posted
I am in the USA and the botox is very expensive plus it has tons
of side effects. One being that it could prevent u urinating all
together and u could have difficulty swallowing but if it works for u great. Anything is better then the OAB Pills which can cause dryness 24/7 of your mouth tongue throat and lips and your throat hurts due to the dryness. Ditto pan is the worst.
Detrol has less chance of dry mouth but being in the USA Medicare won't cover it or u have to get the dr to write that Ditropan does not work or makes u so dry it is unbearable
Karenwe jessicatooney
Posted
Are u in your menopause years or premenopausal. The reason I asked is because hormones helped me. Some form of estrogen and progesterone. If ur low on hormones the muscles of the bladder or body can't hold the bladder up so it might be spastic.
cassie_05344 ashleigh87804
Posted
Yes I have over active bladder and sometimes I feel like I have to pee all the time. What really helped me was Botox injections into my bladder I get done every 3 months I can't believe how much it has help me.
lori39284 ashleigh87804
Posted
Hi all.
My god I never knew anyone ever was suffering with this too. I'm exactly the same I've had this for 8 years now. It just to come and go but this year I've had no break from it! Just constant deep painful pressure on my bladder/cervix. Unbearable, can't sleep unless I take sleeping tablets, can't concentrate or enjoy anything!
I've had all tests, scans, dilation of urethra nothing has worked. How are u girls now? Please tell me something has helped!!
Thanku Lori. X
elle14016 ashleigh87804
Posted
Elle
Karenwe elle14016
Posted
Karenwe ashleigh87804
Posted
How can u stand the Ditropan I took it and my throat tongue lips and mouth were dry 24/7.
I was so desperate that I read it might be a hormone imbalance.
I am older then u I am in my 50's
but Estrogen andProgesterone
stopped the problem. If u r low
on these hormones it can effect the muscles of the bladder and the wall that holds the bladder up is weakened. Maybe u have other hormones out of whack
maybe thyroid or adrenal glands
Get your hormone levels checked it might give u some insight