Pelvic Pain Support Network
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Upset :-(

I'm up at 4:30am writing this with pain and urges to go to the toilet. This has been going on mostly all my life but more so in the last two years. I constantly feel like I have some sort of cystitis. Sometimes I have it throughout the day but mainly it's at night time. I went to the doctor and he basically told me he did not understand what I was going on about. This is keeping me up at night. I explained that alcohol can make me feel this way as soon as I drink it and he looked more confused! Does anyone relate to this? I have stopped drinking caffeine and alcohol and this improved my symptoms over the last few weeks but now I'm up again tonight with the pain of feeling like I need to pee but I don't need to go. Does anyone have any idea what this can be? It can't be bacterial as I tend to just have it at night and then I'm fine for most of the day. If I drink more then I keep needing to go the toilet every few minutes!

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Have you had a urine sample cultured at the lab ? My latest test done at my surgery was perfectly clear but the lab culture showed a bad infection, this was a week after finishing 2 courses of antibiotics, I'm now on my 3rd in less than 3 weeks.

If your lab tests come back negative then you need to see a Urologist, you possibly have Interstitial Cystitis.

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Hi I had this and I had lots of tests for infection but there was nothing .In the end my doctor did an internal and I have a prolapse bladder ,I don't know if this could be your problem but worth asking as it causes symptoms of urine infections and is worse at night .hope it gets sorted out soon it's not nice feeling like that .

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sounds like it could be interstal cystitis I used to suffer from pressure in the pelvic area with wanting to go every few minutes I went to my doctor who suspected bladder infection but tests were always clear so my doctor then suspected it was endometriosis on my bladder and referred me to gynaecology I hope you get to the bottom of what causing it and hope you feel better soon xx

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may i ask if your gynnos made a diagnosis and where you are up to now?

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yeah iv had a diagnosis I have endometriosis but bladder was unaffected but had aheasions on pouch of Douglas and Endo in my womb

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I agree with the other replies having had symptoms like yours I have been diagnosed with prolapsed rectum (and possible bladder prolapse). I had repeated bladder infections and antibiotics to treat them and am now having investigations to 'rule out' other abdominal issues. My symptoms had been going on for years before i went to my GP but I wished I had gone sooner. Its miserable feeling so uncomfortable!!Take heart and see another doctor and Im confident you will get better! I understand what you mean about alcohol - a sort of painful 'twinging' after drinking even a sip, so sadly, I give it a miss now! I would ask for a bladder scan - its totally painless apart from drinking lots of water beforehand so they get better images. Good Luck!

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It sounds like irritable bladder, there's an over counter tablet you can get that helps x

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Hello Bderbyshire,

I am not a doctor, but it sounds like you make have Interstitial Cystitis, IC for short. It is a bladder illness than can cause all the symptoms you have and by taking away coffee and alcohol you are taking away the acid, then feeling a bit better. That seems like a sign to me. I cannot have either, even though I sneak in a coffee here and there. The symptoms of urgency at night and nothing there is another sign. Google it if you can and see if you can find any dr.'s in your area that treat this. There are two good websites, one is: ichelp.org and the other is ix-network.org

They are both filled with lots of information.

Hoping you are pain free soon. I am not so I know the feeling.

Have a Merry Christmas, or Happy Holidays Bderbyshire!

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Hi feeling your pain i was also up 5.30am with the pain , been suffering for 2 years antibotics dont work on me any more ....... i normally have been finally been able to keep a bay but a mistake of not washing the lasy bits straight after intercourse has set me off again .

i have been though all the doctors and even one took nots on what ive been doing as she was impressed ......

so .......

when a flare up

cut all sugars out

cut diary out

no booze

no caffine

take a powder from sweetcures.com ( i ran out last week )

they do a testing kit that shows when u have bacterica

take juniper berry tinsure

To keep at bay ....

wash with ph wash twice a day

drink herbal tea all get on amazon

butterfly peas flowers

dandelion leave

marshmellow root

keep sugar low and booze low

keep a eye on ph levels im always acid

to get me ph 7 i drink water with ph salts

sometimes glass of baking soda this sorts the ph level a treat

i know its a lot but it really does help and im almost normal again

good luck

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Hi vics6 , Are you speaking of urine ph? I know mine is usually 5-6. So what do I do about that? Thanks, Ruby🌹

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your ph levels need to be 7.5 so take alkine salts or asparagus tablets to get ur ph back up

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Well I went to the doctors again and have been referred for a scan. In the meantime I was told after a urine test that I have an infection! I am taking the antibiotics but funnily enough I've had no symptoms in the past week. I find it odd that it has come out that I have an infection as it comes and goes and has been going on for years... Surely it would have gotten worse. I am still also getting the odd pain but I haven't finished my course yet.

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