Collapsed bladder

[Lily2007]

Been leaking urine since November, came on suddenly. 4 tests for uti, 3 negative, 1 positive so can't be that. Pretty constant leaking. Appears during period to be leaking onto tampon too, weird. Vaginal exam saw leaking but couldn't feel anything abnormal. Large fibroid. Retroverted uterus. Lots of irregular bleeding. Mid 40s. Been referred to hospital for physio, ultrasound, and urodynamics? Also given meds to relax bladder which may make me see flashes of light. 2 kids but no symptoms until youngest 10. Starting to feel hot when everyone else is cold.

Anyone been through anything similar and know what's likely to happen. Very embarrassing but is it likely to go with menopause, will exercises help? I'm hoping to avoid major surgery. Large fibroid found last year don't know how large but I'm pretty thin so can't be as big as they get. Thanks for any help.

I think you need another opinion from a gynaecologist. It sounds like a classic bladder prolapse. You might get some improvement with pelvic floor exercises but if it is all too saggy then surgery is the only answer.

It is likely - sorry- to get worse with the menopause because part of the problem is loss of estrogen.

I f you need surgery, go for it! But avoid mesh implants. I had surgery over 25 years ago when my problems were less than yours. There is a prolapse thread on this forum somewhere.

Thanks very much. I just had my first hospital appointment today, rather bizarrely he asked me if I had a collapsed bladder and I thought that's what I'm here to find out! I had two regular GPs say collapsed bladder and got the impression the doctor today was thinking same thing. Only strange thing is internal exam one GP didn't couldn't feel anything out of place though don't know if retroverted uterus would make it more difficult. Doctor today did same exam but didn't comment.

That's interesting it gets worse with menopause. I was kind of hoping it would be the fibroid which go with the menopause but thinking about it even if it is and its caused a collapse its not going to uncollapse. There goes my wishful thinking but I would rather have a realistic idea.

Thanks very much.

Do you mean prolapsed? Collapsed seems an unusual word to use.

I thought they said collapsed but it may have been prolapsed, when you search online under collapsed bladder it also comes up with prolapsed so think its the same as prolapsed anyway and it could well be prolapse is what they mentioned. Not been confirmed yet though but think its likely.

It's prolapsed.

It's quite common.

If it's any consolation, I had a GP and one gynae examine me and say all was fine, then the 2nd gynae agreed there was a problem.

You really need to be examined standing up. Obviously it's not so easy for someone inexperienced to assess it if you're lying down.

Both were lying down. First doctor was just a regular GP and he couldn't see anything wrong but obviously not an expert and said to get hospital assessment. Second was at the hospital and again lying down urology department, he didn't say anything either way other than he could tell there was a constant leak but then he filled it forms for physio, ultrasound and urodynamics and gave me medicine to relax the bladder. He did get me to lie on my side while he examined me but don't know if that helps. Thanks for the help.

Best person is a gynaecologist or a urogynaecologist. Did you have to push when lying on your side?

I think from what you have said there will be 2 outcomes:
1 the physio may work but will take time
2 you may have too much slackness and only an op will sort it.

Thanks PollyPerky. I didn't have to push, just cough. I suspect they are trying physio first but it came on all at once and its a lot of leaking so suspect I'll end up at surgery but will be good if physio can sort it. He seemed to know what he was doing but didn't tell me anything about what he thought and kept taking personal calls.

I've started taking the meds and a wheezy cough has developed. Not sure what to do. Had a cold before so maybe part of that though says can cause swelling which makes it hard to breathe and if you get that stop taking it and get help.

Kept taking the meds for 2 weeks but just kept feeling very ill so called doctor who said to stop them.

He's written me a sick note which says Severe drugs reaction , will have to explain to work it was prescribed medicine.

could be a uro-vaginal fistula? especially if they can't feel anything out of place but leaking continues.

I was wondering about that today not that I know anything about this. I started looking things up as I'm not totally convinced by the prolapse though could be but the doctor couldn't feel anything out of place plus the meds haven't improved anything and when I had a period I noticed lots of clear fluid coming out of the vagina which could well be urine. It's also strange when I stand up it just floods out sometimes not like its coming from where its supposed to be. Got a retroverted uterus if that makes a difference.

Terrified myself by finding cancerous fistulas but don't think they all are by any means so I'm trying to ignore that but have booked in for a smear as I'm overdue. I did have issues in both the births though that was 10 and 11 years ago now. Thanks for the help.

no not usually cancerous. menopause is known to decrease the lining of the vagina thereby making fistulas easier to develop.

If it's a women's specialist physio they will do a quick internal exam with one or two fingers. She will tell you straightaway if all is in the right place. The urethra can move about in position as well with a prolapse and after childbirth.
If it's a bladder prolapse if you lie down, place a couple of fingers in there carefully and cough, you might feel something 'shooting down' which is one indication of the prolapse. Or a soft lump when standing that goes away when lying down...

The likelihood is that your bladder or urethra has prolapsed. If the bladder neck falls lower than the bladder itself, then the wee will literally just drain out. So if you think of your bladder and urethra (in a normal position) being shaped like a question mark - ? - sort of! - there is no 'kink' in a prolapsed urethra /bladder, it just drains as the urethral valve doesn't work. You really need another gynae to check.

Sorry I've not explained that very well, but the idea is that if things move out of position you can get leakage.

Thanks very much for the help.

Went to hospital today for urodynamics test but just saw nurse.

The ultrasound will be another 4 to 6 weeks and still now news on physiotherapy but at least they have my doctors address corrected now. The nurse said my urethra was closing and very tight, no idea what that means but said she would note it.

She could feel a very mild prolapse. She said the leaking was very severe but bladder was pretty much emptying. The lines on machine weren't moving much which she said was good. She couldn't review meds. She said it could just need physio /pelvic floor. She did say I should really be being seen and gynaecology as I have lots of irregular bleeding and they shouldn't just have signed me off when they found a fibroid. She said I also really need to see a urology doctor. Presume I have to go back to my doctors for this and she didn't seem able to set either up. Very frustrating, work have offered to pay for me to go private and may have to do this as this is going round in circles very slowly. Work are letting me work from home 4 days a week as the leaking is so bad but really need a solution to this. Bit scared by all the bleeding.

Hi Lily, sorry to hear you are suffering from this. It is actually a very common problem that is kind of hidden from public awareness. There is a fantastic Facebook group called APoPs, it is a very supportive and informative online community. You really need a referral to physio and a urogynecologist. Good luck xx

Thanks very much Bartleby. In theory they have referred to physio but at another hospital and its been a month and I've heard nothing and no idea who I contact. I thought all my records would be together but it appears not every department seems to have their own and none of them know what the other is doing. They didn't even seem to know about appointments in their own department today. Maybe I need to phone the hospital but I did before and was given wrong info.

I would like to transfer hospitals - our local two were full so got allocated this one but its not close and I'm not confident in it. I would like the irregular bleeding checked out again just to rule out cancers but don't seem to be getting anywhere. It could be the check they did 2 years ago was enough but symptoms have worsened and I would just like to have a conversation with someone who knows what they are talking about. Thankfully work did refer me to a private oh doctor and was good to talk to her and she seemed to think its not that likely to be cancer but more tests should have been done than have been and just said to change to private. The nurse today was doing her absolute best but she said herself I should have been given a doctors appointment. Thanks very much for the Facebook group I will take a look. I will also try to get a urogynecologist though at the moment I'm half tempted just to wait for work's private medical insurance to come through and use that.

I've now had the ultrasound of kidneys and bladder and it showed nothing.

Does that mean I can't have prolapse? The nurse I saw at hospital thought I had a very mild one but the one at our doctors after said I didn't.

Physio referral has apparently been lost.

The lady who did the scan said she wouldn't have been able to see a fistula but there was no sign of prolapse from scan. Smear has come back clear. Apart from urine symptoms have large fibroid and irregular bleeding which they believe is due to fibroid.

Thanks for any help.

It might be worth you looking up 'vaginal atrophy' (lined to peri and menopause.)

Puzzled why you had a scan because they are usually only done for bladder symptoms where there may be disease, not prolapse.

No, this doesn't rule out a prolapse and I'm a bit shocked the medics who are treating you would think it did.

A prolapse is visible and 'feelable' sometimes only when you stand up and gravity helps pull everything down. They would rarely be able to see this on a scan unless the prolapse was severe.

Have you google bladder prolapse? There are lots of diagrams which show how the bladder can leak if the support from pelvic muscles is not there.

Have you not been examined by a gynae with expertise in prolapses and urogynaecology? if not, this is what you need.

Have you not had physio yet to a) examine your pelvic floor strength and b) suggest exercises or electrical stimulation?

Basically, it sounds as if you are being pushed from pillar to post without seeing the people who are experts!

You can refer yourself to a women's physio too if you wanted to do that.

Your options are either exercises - Kegels- for a few months to see if they work , or maybe surgery if Kegels (pelvic floor exercises) aren't working.

Have you started these anyway at home?

You also sound as if you and in peri menopause and may benefit from vaginal estrogen which will help build up the tone of the vagina and give more support to the bladder.

Ask for more help!

Thanks Dahliaaa I did Google that, I'm not sure its that but its good to have ideas.

Polly thanks so much. I'm not sure why they scanned, I've only seen the hospital doctor once and he didn't communicate other than giving me a prescription, a form for an ultrasound, a form for physio and a form for a urodynamics test. The scan appeared to be bladder and kidneys and I was surprised as no kidney symptoms. I do have a fibroid so I was originally presuming the scan was for there but when it came through it wasn't. I've had urodynamics and nurse there said I had a very narrow urethra, obviously the incontinence which she gave the impression was severe but bladder emptying OK, she said she could feel a very mild prolapse but only when I did a big cough.

Next day I saw the nurse at our doctors for a smear (clear) and she said that there was no prolapse though I'm inclined to go with the first nurse as she's the specialist though our nurse has been nursing for years.

Physio referral has been lost between hospitals but I'm chasing it. It was the ultrasound lady who when I asked could she see prolapse said no and everything looked normal.

I've vaguely started kegels but need to be more thorough. Interesting about the estrogen. Referred through urology not gyno and next appointment not until 24/1. Thankfully work are letting me wfh 4 days a week but not sure how long they will let me do that for. They have also provided private medical so I may be best to shift. Thanks so much.