Did anyone have a cystocele repair or prolapse repair that helped with bladder infections?

[stirling]

Hi
I just wondered if anyone has ever had much success with a Prolapse repair? I've seen a few urogynaecologists and one "leading" gynaecologist who don't seem to think my grade 2 cystocele, rectocele, grade one uterine prolapse and anterior wall prolapse (vaginal) have ANYTHING to do with my battling e coli infections, strep b that's in my vagina and now in bladder for the past 7 months.

I'm at my wits end. My bladder can be felt like a hard walnut about an inch into my vagina. I didn't have problems till I noticed a cystocele.

They all mumble the same sorry sentence "surgery could make it worse"

Which means I sit back and live with the ongoing pain and hell that I've been in for the past 5 years.

Ive tried physio and always told my pelvic flood is "too tight" and I need to relax it.

Antibiotics don't clear the infection no matter how high the dose.

Any success stories please? I'm thinking of going to Germany for another opinion.

Thank you

• pelvic floor

Hi there,

Sorry to see you haven’t had more of a response. I’m not sure how helpful my reply is going to be except to say that I really sympathise with you.

I’ve been wondering if I myself have a cycstocele or some type of prolapse due to the fact that I struggle to empty my bladder completely. I’ve also just undergone a colonoscopy trying to diagnose IBS or other condition, still waiting on my consultant appointment.

I like you don’t really suffer pelvic floor issues and have always taken care with exercises as recommended, I even bought a kegal 8 machine after the birth of my last child.

The one reason I can think of for their reluctance to surgery is after the more recent issues involving women who had had the vaginal mesh repair. It has indeed worked well for some but other has left with painful complications that from what I understand are not reversible. There are some threads on mumsnet about it and you could google to find out more. I don’t know if their are any alternatives to this particular type of repair surgery, I do know that pelvic floor exercises are recommended in the first instance but beyond that I am not sure.

I do hope you manage to find some solution in the mean time if you need a friend or an ear to moan to, I’ll be happy to listen.

Hi Lillygolightly,

Thank you for responding! Sometimes I have great support on mumsnet, at other times I wonder whether it's just a matter of timing - perhaps those with experience haven't logged on lately.
Wish I could find a way to reach out, must be many many women with similar experience. Its very quiet on the bladder health UK forum too :(

Sorry to hear about you not being able to empty your bladder fully. I have experience with this. Things that helped me were humming happy birthday to myself while weeing, double voiding ie waiting for a bit, squatting is also really helpful.. For retention my hospital prescribed Tamsulosin which increasing flow. I use it in emergency as I find that if my bladder is really not emptying, a five min walk around the block helps to release.

It's a hellish illness. Been going on for far too long.

Likewise, Im happy to listen. I know how debilitating it is.

Yes mumsnet can be great and other times you can wonder if your post is somehow invisible. I think your right on the timing front.

The humming while peeing sounds familiar, (I chant 123 wee repeatedly to myself and sometimes turning on the tap helps) I’ve always had a bit of stage fright where peeing is concerned, especially in public loos. However since my youngest was born I’ve noticed that I can go for a wee, and stand up a few seconds later and feel like I’m not done if that makes sense. It’s manageable through the day but quiet annoying at night when I can be feeling the need to pee and having to get up several times leaves me feeling exhausted the next day.

Being honest I’ve been quiet preoccupied with getting my IBS sorted, but between the struggles of number 1’s AND 2’s I feel like I’m knackered and quiet ready for the scrap heap. Going through the colonoscopy was the worst but am seeing my consultant next month and I’m desperately hoping for some resolution, I suspect there won’t be one but for now I can hope!

Can I ask if you don’t mind how your cystocele and rectocele were first diagnosed?

It’s is terrible dealing and indeed living with such an illness, especially when it’s not sort of thing you can just strike up a conversation or easily ask for advice about. Makes it very lonely indeed

Couldn’t read your post and not respond to it ! I spent months constantly needing to urinate . Even if I’d just emptied my bladder I immediately wanted to go again . Sometimes I’d feel desperate for a wee and yet only squeeze out a couple of drops. It was a nightmare. I saw a women’s health physio and my GP several times but nothing helped. Eventually, after spending a whole day on my feet lifting large , heavy casseroles in and out of the oven ( big meal for 20 people ) I felt terrible and took a look at my undercarriage with a mirror. I was horrified to see I had some sort of prolapse.

I paid to see a private female gynaecologist. I was told I had a level 2 prolapse of the uterus and bladder , a level one prolapse of the bowel and needed a hysterectomy and anterior wall repair. To say I was shocked is an understatement. After discussion I had a ring pessary with support fitted and was shown how to take it out for cleaning and insert it myself. In total I spent the best £500 of my life !

I would say I am 90% “normal “ now. I feel so much better . Apart from the odd bit of urge incontinence I have no problems. I used to think I had constant bladder infections but apparently not.
Has any medical person suggested the use of a pessary to you ? It is worth trying if they are saying surgery is off the table .

Forgot to add .... I did not have any surgery. The thought terrified me after reading horror stories of what could go wrong.

Thank you both so much for the replies!

Lillygolightly, in 2016 I noticed I couldn't wee properly and took a look with a mirror and to my horror saw a lump on my urethra. Saw a private gynaecologist and was diagnosed with the cystocele. The rectocele was only diagnosed early this year because I had ibs issues like you - interesting the link, right? So many cross links to bowel related issues.
I had a colonoscopy in Jan this year.. And an mri which showed "significant pelvic descent". I did smile when I read about your little chant! From a psychological point of view I would think the brain is less likely to relax and connect upon instruction and more likely to relax the sphincter through some gentle singing or humming. Maybe try it. I know exactly what you mean about the loneliness aspect, my partner is tired of repeatedly hearing about it and friends don't understand the gravity of the situation because they say I look fabulous! On the exterior!

4 seasons that is such a wonderful inspiring post! I knew it! I've been asking about this but the hospitals just shrug their shoulders, whereas Bladder health UK nurses told me to try it!

4 seasons, did the pessary irritate your bladder at all? That's what the UCL urologist said to me, that it'll irritate it.

How often do you take it out for cleaning?

The pessary has not irritated my bladder at all.... the opposite in fact. In my case almost at once I felt the pressure off my bladder. I wondered if the descending uterus had been pressing on my urethra/ bladder. I’m no medic but it makes sense to me.
I take the pessary out weekly for cleaning . I just use a little blob of KY jelly to make things easier. The gynaecologist said to remove it about every two weeks but I find I can remember to do it weekly better.
It might not solve all your problems but is certainly worth trying . I was desperate to avoid having surgery even though the gynaecologist seemed confident that it was the way forward. I couldn’t see the point of removing a healthy organ then leaving a “ space “ for other organs to fall into !!! Well, that was my theory anyway.
I’m hoping that I can control my prolapses for as long as possible by using my pessary. I’ve heard of a physiotherapist who has used hers for twenty odd years .
It’s only since I’ve suffered from these problems that I’ve researched online and realised just how many poor women suffer in silence for years . It’s not generally talked about as it’s linked with the “ shame” of wetting yourself etc. I’ve talked to several of my friends to find that they have similar problems . Obviously one of the best kept secrets !

Have you heard of the LUTS clinic which is the nhs clinic for chronic UTIs, they specialise in long term high dose antibiotics.

Or if you can afford it see Prof Malone Lee in Harley St.

4 seasons that's so helpful to read. Especially this :". I wondered if the descending uterus had been pressing on my urethra/ bladder. I’m no medic but it makes sense to me."
I was panicking so much this week wondering what on earth is pressing onto my bladder - scared about growths etc...

Is your gynaecologist London based or nearby? Just want to see someone competent!

Sleepykat thank you, yes seen Prof ML and taken years of antibiotics, it's a nightmare. I'm on the waiting list for luts clinic but don't relish the thought of another year and more on antibiotics. Like Lillygolightly, I'm struggling with IBS issues

I looked online for details of a local BMI hospital ( they do private treatment). I chose a specialist from a list of consultants .... again , online. My GP then wrote a letter of referral for me to take with me and I made an appointment.... all online.
I chose a female specialist , just my personal preference and was able to read all about her experience and training. I also chose her on the basis that she was responsible for training other doctors in gynaecology / urology. All very quick and easy. As with any medical advice/ procedure there is always an element of luck /chance so I spent some time reading about each specialist then just made an educated choice. I got an appointment within a couple of days and was examined and fitted with a ring pessary on the same day.
I hope this info helps.

Thank you 4 seasons that's really helpful!
I'm so glad it's helped you.

I’ve had similar problems and about 6 years ago had a tvt mesh fitted. I regret this and it often feels itchy and uncomfortable like something is digging into my insides. There is a Facebook group called sling the mesh which campaigns against using mesh for vaginal prolapse. Also it hasn’t really helped my problem and I still leak a bit. I wish I’d have known about pessaries they sound a good solution. The trouble is now I’ve lost my faith in doctors to sort it out. I wish I could find a good one I could trust to sort out this problem. I’m worried that as I have mesh now I might not be suitable for a pessary.

I'm sorry to hear that Clopper. Yes I've heard about the horrors of tvt mesh. There's a specialist urogynaecologist in London who is well known for mesh removal. A friend of mine had hers removed with this doctor and claims she 'saved her life'...

@stirling

Yes the IBS is definitely an interesting link. I’ve had 3 babies all very spaced 15,9 & 2 so my body had plenty of time to recover following each pregnancy. After my first everything just snapped back to normal no effort, but I was only 23. With my second at 28 whilst I didn’t suffer any bladder issues I did have some bowl related ones after but it evened itself out within 2 years. Initially after my final pregnancy/birth I felt quiet well, could cough/sneeze to no ill effect but then a few months later I got a terrible UTI and had to take antibiotics. It was after this that things went truly haywire and before I knew it dare not leave the house without taking some Imodium. The longer this has gone on the more I’ve noticed other issues like those with my bladder which has caused me to consider prolapse.

After having read things on here I’m going to discuss a few things mentioned on this thread to my consultant. The ring pessary in particular sounds interesting and definitely preferable to surgery.

I think anxiety does go some way to playing a part in all this, however suffering with this only increases the anxiety in the first place. It’s a vicious circle aside from which I can hardly remove every element of stress from life - ha if only!! DH is super fed up, in all the 16 years we’ve been together I don’t think he’s seen such an empty shell, that coupled with the fact that this sort of thing does little to make you feel sexy or in the mood! I’ve also like you had the comments of oh you look great etc, it might even be true, but it’s no help when your insides feel like they are broken!!!

Eugh...I don’t want miracles nor do I expect them, I just want to feel normal!!

PS: I’ll try the humming/singing, make sense what you said. I’ll stop bossing my bladder around and see how it works out.

Hi Lillygolightly, I share so many of your thoughts. It's interesting to read about your history, and that everything was triggered by that one really bad episode of uti. The embedded infection theory does have some truth to it but the thought of long term antibiotics really frightens me.

One thing that helped me was lying on the floor, a bolster pillow under my knees, hands on belly and breathing into the belly as taught to me by my physio. You have to really release and let "flop" all of your pelvic floor, and abdominal muscles. This will also help with bowel issues too.

I'm reading a fascinating book at the moment about bladder and pelvic pain, saying that all issues actually stem from a problem with the back...

Also about to start counselling with Mind, because like you, the stresses never really go away do they?
I battled with 2 years of migraines on a daily basis some years back, and getting everything off my chest through counselling really helped to clear them away once and for all...