Constantly needing the loo: Hi If feels... - Endometriosis UK

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Constantly needing the loo

IggiePiggy profile image
20 Replies

Hi

If feels like I constantly need to pee and it's getting me down. I don't drink anything in the morning until I get to work, 2hrs after I've woken, as I won't be able to get through my commute without needing the loo. I visit the toilet so often I'm sure my work colleagues think I'm up to something.

The feeling of needing to pee comes on really quickly and if don't go I'd wet myself. If I'm in a meeting at work, I sometimes have to get up a during mid conversation and go to the loo which is very awkward. My bladder hurts and I frequently and urgently need to urinate.

Does anyone else suffer from this? Is this endo related? It's really getting me down :-(

Angela X

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IggiePiggy profile image
IggiePiggy
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20 Replies
Impatient profile image
Impatient

There are reasons for this.

No1 to check for infection, e-coli infection doesn't usually cause much pain but can cause you to have to pee at very short notice, so a trip to the GP with a pee pot sample for it to be checked for infection is a great idea. If positive then antibiiotics, and then 1 week later take another pee pot to be checked and if that still shows infection then your pee needs to be sent to the lab to be checked to see what it is and what meds would best suit it.

No.2 as you get older women can loose their muscle control down stairs for all sorts of reasons, surgery and endo can both be an issue.

There are drugs to help with bladder control problems, it might be a passing phase it might be a permanent state of decline (sorry about that - but I'm being honest)

No.3 spams of the bladder muscles due to a recent trauma, could be caused by just about anything, but if your bladder muscles are not working in delighful unison, then as above- there are drugs to try and calm it down.

No.4 prolapse of the bladder or cysts putting pressure on the bladder, at any event the bladder is not sitting comfy where it ought to be, and surgery to remove cyst or lift the prolapse can help resolve the pee problems.

There are probably other likely causes too, but it's not unusual and not necessarily endo related either though it might be.

First eliminate it being an infection (even one that shows no other symptoms.)

Once that is done, then its a matter of trying different drugs to see what suits best to give you a bit more control, meanwhile your GP can refer you to a specialist to check for prolapse or cysts or any other physical reasons why this is happening other than the aging process.

and hopefully find something that isn't too tricky to fix.

It is unlikely to resolve itself by worrying about it, so you do need to visit a clinic and pick up 2 or 3 sample pots, no need to fill in the details on the side, just have an old jug or old margerine or icecream tub or something disposable, to catch your wee 'mid stream', that is pee a bit in the loo, stop if you can, pee the rest in to the tub then pour some of it in to the pee pot to take to the GP. tip the rest down the loo .

Keep the spare peepots for the following week, just in case it initially tests positive for infection, and you are on anti-biotics. You will need to check they have worked with a follow up dip test especially if there are no other symptoms than racing to the loo.

Not all UTI's cause painful burning passing of wee. Hopefully it's simply an infection and easily treatable.

IggiePiggy profile image
IggiePiggy in reply to Impatient

Hi Impatient

Thank you so much for taking the time to reply :-)

I visited my gp and I done a sample but it came back negative, so she put me on Vesicare which didn't make a difference. I went back to my gp again and she sent me for a scan, and to cut a long story short after 22yrs and a lap I was diagnosed with endo. I had a large cyst on my left ovary, polp in my uterus and endo in my pod.

I finished a course of Zoladex in December and I'm not taking any other meds at the moment. I thought after my lap that the constant peeing would stop but it hasn't.

I visited my gp 2 weeks ago and told her I'm still frequenly and urgently urinating. She didn't ask me to do a sample, she told me to wait until I see my gynae. My next gynae appointment has been pushed back from end of May until July, and I have a trans vaginal scan booked for June. I'm 36 so hardly an old lady :-)

That's why I'm feeling down really, as seeing my gp hasn't made a difference. Thing is other gps in my surgery are just as bad, that's why it's taken me 22yrs to get diagnosed.

I could go back to my gp again and insist on a urine.

Thanks again for coming back to me

Angela x

Hughffy profile image
Hughffy

I have this issue which is due to endometriosis adhesions on my bladder and my bladder is currently stuck to my bowel and uterus. Unfortunately I just have to manage as best as I can with it.

IggiePiggy profile image
IggiePiggy in reply to Hughffy

Hi Hughffy

Thanks for coming back to me. I'm so sorry to hear that you've got endo adhesions on you bladder. Isn't there anything your gp or gynae could do?

Sending you hugs

Angela x

Jillanovitch profile image
Jillanovitch

I'm having the same problem my luv, along with back ache, I know it's not loss of bladder control etc as I can hold it if I need to, but I feel the urge to go a lot, as soon as I've been I get the urge to go again, my dog believes it's the endo maybe tilting my womb slightly, anyway I have a scan booked for 17th April, I'd go and see your dr get it checked. Awww good luck xx

Jillanovitch profile image
Jillanovitch

FFs Dr not Dog hahaha

IggiePiggy profile image
IggiePiggy in reply to Jillanovitch

Hi Jillanovitch

Haha your dog might provide better advice than your dr :-)

That's exactly the problem with me, I can hold it but I need to go a lot. Good luck with your scan.

Angela X

endo_star profile image
endo_star

I have this problem with bladder and bowel. I have endo on my ureter and bowel so I'm sure that's what's causing it. I also have a long commute so sympathise with you x

IggiePiggy profile image
IggiePiggy in reply to endo_star

Hi Doodah

Are you having any treatment for this?

The commute is the worst.

Thanks for replying

Angela x

endo_star profile image
endo_star in reply to IggiePiggy

Hi Angela. I'm having excision surgery in August so keeping my fingers crossed these symptoms will disappear! I'd recommend finding an endo specialist as the general gynae who diagnosed me wouldn't operate on my endo :( xx

Noper profile image
Noper

I have this problem too, and wonder if it does relate to my endo. Have tried antibiotics and bladder dilation op - to no avail. For me, the thing that helps most is drinking plenty of water (I find that restricing intake just makes it worse), and avoiding all spicy or acidic things, and caffeine and things with lots of sugar in. Very boring, but I find it's worth it for the relief it gives.

It's a very irritating thing to experience, and not something I ever expected to have to deal with in my early thirties. My gynae said he didn't think it doesrelate to my endo but I'm not so sure. For me the problem is cyclical, starting each month as soon as period ends, and only letting up for the few days before my period - so I reckon there's at least some hormonal element to it.

The other thing that helped me quite a bit was waterfall d mannose (but I have stopped taking this since trying to conceive).

IggiePiggy profile image
IggiePiggy in reply to Noper

Hi Noper

I definately restrict water intake, especially in the mornings.

I'm in my mid thirties and I also experience this as soon as my period begins. Like you say there must be something hormonal to it. I'm going to try waterfall d mannose as I've heard good reviews.

Good luck trying to conceive.

Angela x

Pands profile image
Pands

Hi, I had this problem - I had to go to the toilet A LOT but I could hold it if required (painful bladder though if I had to wait too long) but I thought it was just 'me' as it had been going on for a few years. I also had to nip in and out of work meetings and always knew where the toilets were in town/ client buildings etc etc...

Anyway cut a long story short I had a large infiltrating patch of endo on my bladder that was found during my excision lap. Had almost gone through the wall of my bladder drs subsequently discovered when cutting it out. I had never said anything about the bladder problems to my gp or gynae as it wasn't something I thought about as a symptom because endo was all very new to me and a bit of a shock. However in my case it was absolutely endo related as since my lap I don't need to wee anywhere near as much - can manage 3/4 hr car journeys and all night and walking to town and back - it was a revelation. Please go and get this checked out. Best wishes.

IggiePiggy profile image
IggiePiggy

Hi Pands

No it's definately not just you. I'm glad to hear that it's improved since your lap, and I'm rather envious you can manage a 3/4 hr car journey :-)

I had a lap in March 2012 when I was diagnosed with endo. My gynae never mentioned it had been found on my bladder though.

You've definately given me hope.

Thanks

Angela x

IggiePiggy profile image
IggiePiggy

I just wanted to say what a lovely bunch of ladies you all are! Thank you for taking the time to reply, endo makes you feel so lonely and it's hard for people that don't have it to understand.

Hugs to you all

Angela x

Jillanovitch profile image
Jillanovitch

Hi Angela, yeah we are great like....hehe no ladies I've been tested for everything for months even sent to a bladder clinic, hence the scan I do believe it's endo as I have bloating also that's another symptom, tiredness, backache all symptoms plus sometimes abdominal pains quite severely, even though I've had a complete hysterectomy. It's definitely the endo, can't wait for my Dr to eat humble pie when I say I told ya, she forgets I've had endo since I was 14 on & off & I know my own body!! ;0)

katie1021 profile image
katie1021

Hi Angela

Sorry to hear your feeling this way! I know exactly how you feel as I am suffering with endometriosis and constantly needing the loo with alot of abdominal pain and even pain while going to the loo which has been so severe my husband phoned an ambulance (this was before i had a diagnosis)The specialist I have seen says that it's because I have endo in my pelvis but I won't know what damage has been done until I get my operation :-( it's such an awful thing and its so misunderstood!! :-(

buddyhorse profile image
buddyhorse in reply to katie1021

hi I feal like that to I need to pee a lot and I also have endo on part of my palvous and spots of it in other places. its not a nice thing to need to pee all the time

teadance profile image
teadance

I have had this at night for over a year now. I had a kidney infection in my teens and have had a weak bladder ever since but recently I was getting up several times a night to go to the loo. I went for STD tests (for some reason my doctor always suggests this multiple times a year no matter what I go to her for despite me being in a long term relationship for years!) anyway, they all came back negative. There was a small amount of blood in my urine so I took some water infection tablets but to no avail. I was sent for a scan which showed nothing and the next step was to put a camera down there and have a look around. Whilst waiting for this appointment I randomly had to go to a and e with a friend and got talking to a nurse who confidently said the doctors wouldn't find anything and that I simply needed to drink more water as it was irritating my bladder. I tried to drink several glasses a day and at first it made the problem worse but a few months on and I am sleeping through the night for the first time. I still have nights where I'm up constantly but it is usually on a day when I've drunk too late or not enough throughout the day. I'm not saying this is the end of it but it's a simple thing which seems to have improved things for me. There seems to be very little out there for incontinence unfortunately and my doctor didn't really know what to do with me so it's been a very long struggle just to get to this point.

Endosista1508 profile image
Endosista1508

Hey, just wondering if you're still suffering from these issues?

I have endometriosis and have had 4 laparoscopy's since I was 18 (now 26).

I have an appt to see my gyno next week as I swear 100% I have endo on or in my bladder again. It's ruining my life. I avoid most social outings as I constantly need a bathroom and it's just too stressful.

I'm hoping your situation has improved.

X

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