Posted , 8 users are following.
Hi
New to this my problem has been on and off for 3 yrs been tho usual tests always come back all ok
I have constant feeling like i need to urinate and bladder pressure taking all the regular meds Doctors throw at me but cant seem to get to the bottom of this
Its a lonely place to be with this horrible feeling i do find it hard to cope and get any understanding of whats going on and why 😔
0 likes, 33 replies
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susan556 karen06058
Posted
Hi Karen, what helped me is keep away from citrus fruits, caffeine including chocolate ! had two weeks of drinking mainly water, aloe vera juice, avoid tight fitting clothing, only wear cotton knickers. Herbs urva ursi may help. As no infection found could be inflammation caused by certain foods, was also advice to keep off celery as well. Can also be hormone related, you dont give your age, Interstitial cystitis could be the problem as well, no infection but urge to keep going. This time 3 weeks ago i was feeling so uncomfortable, could hardly bear to walk. But im post menopausal , i had what you described in my late 20s to 30s, turned out to be the pill causing this cos as soon as i stopped taking it and became pregnant it all disappeared,
Sue
edmon2129 karen06058
Posted
maybe You have Interstitial Cystitis...
karen06058
Posted
Hi susan 556
Diet wise have had low acid diet for while water is my main drink no caffeine for over 2yrs not a big foodie
interested in this urva ursi will look it up
Thank you
Have always thought i have IC but Doctors specialists dont seem to want to discuss this.
Urologist no help at all told me to take cranberry tablets as couldnt find anything obvious
Have been under urogynecologist which i went to for second opinion
Did more tests ridged cystoscopy he said no ic stretched my bladder which did help had good 6mths slowly things have become bad again im currently house bound with pain
Been back to Doctors twice he said it difficult because they dont know what there treating
Did show signs of infection white blood cells and blood in urine had 10 days nitro
went back for another check urine clear but still having the pain and discomfort.
Current meds
20mg Amitriptyline
10mg oxibutynin
paracetamol
ibuprofen
Hot water bottles
not that there doing alot
Age im 54yrs been having vagifem for over a yr and now started on HRT patches
they just seem to shove things at me without the whys ?
Iv not heard of urva ursi will look it up thank you for that.
Is it ic you suffer with?
Are you well now?
Thank you susan and edmon for your replys
karen
susan556 karen06058
Posted
Karen im well now thanks, it was seeing a kinesologist that helped. She assured me it wasn't an infection and would go, was told to drink bicarb of soda in warm water for burning, and take a desert spoonful of virgin olive oil twice a day before food. Aloes vera juice daily and rink lots of water, These were to heal internal problems as had digestive problems as well, was so bad i couldn't bear to walk, i know ive a slight prolapse and it felt like it had gone to a full blown one, pressure every where on bladder bowel and urethra. Had a terrible throbbing like a couple of minutes after emptying the bladder which would continue for about half hr. Anyways im so much better now. She did also say i had Interstitial Cystitis... Have been on vagifem a few years back but sadly had to give up due to side affects, eg period like pain and then a light bleed so ended up being check for thickening of lining of womb but luckily this hadn't occurred.
Sue
dougal20 karen06058
Posted
Hi there - I found PTNS worked for me - Posterior tibial neural stimulation (I think!). Not all hospitals do it but I was referred to one that does by my consultant. It's based on acupuncture so not invasive. It involves 12 weekly sessions followed by top ups so it's a commitment but various other things hadn't made any difference so I was keen to try anything as I was pretty much housebound by that stage.
Good luck!
karen06058
Posted
Hi Dougal
Did you have this on the NHS ?
Because they keep saying i dont have ic
im finding it difficult to get any treatment
for it but my bladder says otherwise
Thank you for your reply will try and talk to Doctor about this
Thank you
lynn41704 karen06058
Posted
Sorry you are suffering Karen. I was on oxibutynin which didnt help at all, my urologist changed it for Mirabegron which is a much newer drug and helps me.
It might be worth asking to give Mirabegron a try.
Take care.
karen06058
Posted
Hi lynn
Suffering is the word takes your life away
Doctor has given me some
Mirabegron but never really says how will work or any imformation really
How long did it take to help you ?
Also did you suffer same symptoms as me ?
Thank you for your reply
i am grateful
karen
ann55375 karen06058
Posted
i am following your story as im in exactly same boat. now two years on, ive had some respite then it all starts up again. e coli found again after several clear tests. rigid cystoscopy is what urologist says but i know its not nice and doesnt always do much, would you have it done again? I AM LIKE YOU! i use paracetamol, hot water bottles and this severely disrupts my life. gp is pretty clueless unless uti there. she gave me vagifem, made it worse. i am very interested in PTNS, how do i access this?
lynn41704 karen06058
Posted
I had a constant urge to pass urine even when I had just been. GP kept checking for UTI which sometimes I did have and was treated with antibiotics but often there was no infection but traces of blood. I tried different medication before seeing urologist who did a cystoscopy to rule out anything nasty. I was prescribed the Mirabegron together with low dose Cefalaxin (antiobiotic) apparently microscopic blood in urine is quite common in older ladies. It took a few weeks to get benefit from the Mirabegron and Cefalaxin but it helped a lot. Around the same time I was started on Vagifem for vaginal dryness and it could be that the combination of all three set me on the right track.
I drink mostly water and have caffinine free tea and coffee. Eat fruit and sweet things in moderation and only ever wash my delicate areas with plain water or simple soap and never use bubble bath etc.
I do have the occasional off day but it is usually when I have been out or on holiday and have not stuck to the rules regards eating and drinking.
Take care and keep in touch.
karen06058
Posted
Hi Ann
Its horrible place to be in with this constant discomfort the medical profession shaking there heads at you i found the urologist useless they dont even talk to you its in and out.
The urogynecologist wasnt so bad had everything looked into pulled around etc but because my cystoscopy was clear think he lost interest and stuck me on HRT which iv only been on a couple of wks
but its very bad again at moment leaving me house bound again hate taking all the pills but would try anything to get some relief
Dont leak or have to rush to bathroom or go excessive amount just the constant pressure and thobbing like i need too doesn't hurt too go either
Yes would have cystoscopy again didn't have any problems think he stretched my bladder which helped as didnt need any meds for over 6mths after going to ask doctor to refer me back to them
As in the PTNS not heard of this b4 and not sure if its something NHS would do
im thinking of paying to see pelvic floor therapist to see if any help
Totally at a lost really dont get alot of help with meds advise either its just take that take this really
my daughter more helpfully on that front as she's a dispenser in a pharmacy and knowledgeable on drugs
Thank you for taking time to reply helps to know your not on your own it's hard to explain to people how it affects our lifes
Karen
ann55375 karen06058
Posted
yes i can agree with all you say. i have finished the antibiotics, yes they took the pain down for a while but i feel it returning. if i out another sample in no doubt it will,be clear, but that doesnt mean im not having symptoms. dr doesnt understand it im sure how badly it affects our lives. woke me at 3am and couldnt get back to sleep. what i dont get is the fact that i have ache, frequent urination and yet not other symptoms of cystitis like burning when weeing, no blood in urine etc . as you say urologist i found was quite dismissive and said oh we will must do rigid cystoscopy and bladder insillations but theres really no cure. makes me want to give up. i wake so depressed with it all. gp says dont rush at cystoscopy, lets see if we can get infection down first. shes not the one suffering. what i want to know is, is it worth having cystoscopy as others say it makes it worse and, they bleed and get utis after it.well thats as bad as now!
ann55375 karen06058
Posted
karen, do you feel nauseous with these symptoms too, i forgot to ask you.
karen06058 ann55375
Posted
Hi Ann
Sorry you had a bad night i often get woken in the early hours even tho
i take amitriptyline for the bladder
like you i get the ache and urge but no burn i don't feel nauseous with it tho
Karen
dougal20 karen06058
Posted
Hi Karen - Just to say that PTNS is definitely available on the NHS, just not everywhere. I went to North Middlesex Hospital in London, having been referred from my consultant at the Whittington Hospital (also north London). At the N Middx it is a nurse-run service in the Urology Dept but in collaboration with the Gynae team. Worth asking about as it seems to work for a range of symptoms and conditions.
I wish you all the best.
Christine
karen06058 dougal20
Posted
Hi Christine
Thanks will ask my Doctor about this when i see him thursday they insist i dont have interstitial cystitis im not so sure tho?
Thanks karen