Has anyone else experienced a vesico-vaginal fistula?

[citrine]

I'm due to have a repair of a vesico-vaginal fistula in October. This is a post-op complication that occurred after major surgery for ovarian cancer last November. This results in urine leaking into the vagina. I have been told that they will need to make a cut to do the repair and I believe I will need to wear a catheter for a couple of weeks after. I would welcome any information from anyone with a similar experience.

[Hidden]

Hi Citrine,

It looks as if you have stumped people with this question you could give OvaCome helpline a ring on Monday and speak to Ruth Payne tel [phone] she might have come across others with this...best wishes for your pending op love x G x

[citrine in reply to Hidden]

Thanks Gwyn. Yes, that's a good idea.

[Hidden in reply to citrine]

Hi Citrine,

With regards to your remark on smiley faces ( lower down)

a while back I wrote a blog on how to do smiley face you will find it "tagged" under " smiley faces" if you go to the top of the page and press " tags" it will come up with the tag page and then press on the alphabet "S" it is quicker to find you can either practice on there or just read it...the smilies don't turn into smiley faces until you post them..this is why it is a good idea to practice first ...but you can't post them unless you write something even if it is just Hi ...

I hope this makes sense to you lots of others wanted to know how to do them hence the reason for the blog cheers love x G x -/

[Hidden in reply to Hidden]

Oops I missed the eyes out haha

[Hidden]

And from me too. It's just another thing going on isn't it. All good thoughts from me to you. x

[citrine]

Hi Tina,

Thanks for your kind message.

it is a bit of a nuisance but I've been told the forthcoming op should solve the problem. When I first noticed the problem, a few weeks after the original surgery, I thought it was pelvic floor weakness - which can happen - and religiously did my pelvic floor exercises several times a day. It was only after several weeks with no improvement that I reported it to the medics. I had a cystoscopy + EUA and MRI (oh joy!) at the beginning of May. I was then offered an op date for repair at the begining of August, the very week we'd booked our holiday which I really didn't want to cancel so I'm looking forward to getting it done. The reason for the delay is that the repair op requires a Urologist as well as a Gynae surgeon.

PS, if anyone else does suffer with the waterworks for whatever reason, the pads are available on prescription. Which comes free to us lucky people. (I would put a smiley face here but haven't worked that out yet.)

Love to all

Citrine x

[lisa4992]

Hi I had surgery on my bladder two years ago and had to have a catheter for two weeks at home. I found it quite uncomfortable but not painful. The main prob was carrying the big bag of urine around.. The hospital gave me a cute cotton bag to put it in and that way it was easier to manage around the house and if I went out.... Not nice having people staring at your bag of wee! Like I say it was uncomfortable especially if I sat on the tube accidentally... Gave a strange tugging sensation. I showered every day to keep as clean as possible. By the end of the two weeks I was desperate to get it out as it became more uncomfortable, I think the body recognises it as a foreign body and wants rid. Once it was out things went right back to normal. I was scared to do my first wee in case it hurt or sprang a leak! But it didn't... My advice would be make sure you have a willing slave to bring you cups of tea and yummy cakes, stay in bed for the entire two weeks reading all your favourite books, magazines and watch lovely old movies. Don't let any pet hairs near you seriously, they get everywhere, we were dogsitting at the time, not to be recommended! The best thing is in the middle of a good film, you don't have to press the pause button to go for a wee! Lol... The very best of luck to you. Keep your chin up. Lisa x

[citrine in reply to lisa4992]

Thanks so much Lisa. Have got the "willing slave" primed and ready to go. (He was pretty good when I had my original surgery + chemo.) I had a catheter in for a couple of days after I had the cystoscopy + EUA in the hope that it would keep me dry but as I was still leaking, it was taken out. I'm more worried about that than the op but will grit my teeth and get on with it, knowing that it is temporary. Have started stockpiling books and magazines.

Love Citrine x

[Solange]

Hello Citrine,

I'm sorry, but I'm thankful to say that I know nothing about this but just want to wish you the best of luck. It's such a shame for you to have an added complication.

Best wishes, Solange

[VickyEm]

Hi Citrine

When I had my 2nd debaulking done in 2005, my bladder was ripped during the operation (oooops!). This meant I had to have a catheter for 10 days.

I found it a bit depressing and cumbersome dragging the bag round and having everyone staring at your wee. Although it did prove to be a conversation piece as day by day you could see the urine change colour from a greeny colour (when it has blood mixed with it) through all the colours to a healthy straw colour.

Once I was up and about, however one of the nurses found me a leg bag to wear. So your collection bag is strapped around your upper thigh. This means that the bag is hidden by your clothes and you don't have to remember to pick it up every time you go somewhere, and no snagging the tube on things. But for me, it also meant I could put my track suit bottoms on. How I loved to be back in my civvies. I'm not the most lady like of people, so having to wear a nighty whilst reclining on a hospital bed, invariably meant I was showing my knickers of to all and sundry. Made me feel human again.

Vx

[TinaWright]

The other day I saw this dear old man riding his bike past our house, with this massive blue bag strapped to his side full of fluid. My heart went out to him and I admire his courage riding his bike on such a cold windy day too. I think I would be staying in my house, at least if it wasn`t a premanent thing.

I admire the strength and courage of all you ladies - you are all my inspiration.

Citrine, a friend of mine had a hysterectomy (no cancer, thank goodness) but they damaged her bladder too and she had a cavitor for a while, she said her`s was strapped to her leg. I`m not sure how I would cope as I only wear jeans or tights with a dress. Not so easy in the winter I wouldn`t have thought.

Good luck with it all - I will be thinking about you and sending you a hug in thought

Love from Tina xxxxxx

[citrine in reply to TinaWright]

Thanks Tina. I've been giving some thought to the clothes problem and have been scouring my wardrobe for long flared skirts and mustered a motley collection of four. One is a summer maxi - how practical. One is a rather nice leather but it might trip me up! There's an M&S crimson corduroy The one I'll probably end up wearing is a denim pinafore which I can wear with a t-shirt underneath and a cardi/jumper on top if need be. I'm going to take Lisa's advice and only move when absolutely necessary.

Love from Citrine xxxxx

[Mollypixie]

Hi I'm goin in on Tuesday for the same surgery plz plz plz help me!!!! I'm so scared x

[Hidden in reply to Mollypixie]

Citrine's post was from 3 years ago!

(It's always a good idea to check this when you reply to a post as, unfortunately, some older posters are no longer with us and this can be upsetting for their friends)

I hope Citrine won't mind me saying ( I think she's on holiday) that she is fit and well and the surgery went well.

We think of these fistula ops as being pretty rare, but in fact I know 4 or 5 women who've had different varieties of them in the past year or so....All are doing well. Try not to be too scared and just think how nice it will be once it's been done.

[jjlachouette]

Hi! Citrine, Just found your post. How are you doing? I know what you have gone through is very difficult. Takes time to heal. I had this type of repair 22 years ago. It is a long story. But I was patched up eventually. Thank God. Hope to hear from you.