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Burch's Colposuspension anyone?

(31 Posts)
cardamomginger Thu 18-Aug-11 09:48:20

Hi,
Have posted this in General Health, but often get better responses in Childbirth, so thought I'd stick it here too.
I have a variety of birth injuries and problems - cystocele, rectocele, detached puborectalis, adhesions, urinary stress incontinence - and I am coming close to deciding on the surgeries that I will be having.
Had urodynamics last week and I saw my gynae yesterday to discuss. He is up in the air about whether a Burch's colposuspension is appropriate to sort out the incontinence, or whether to do a polypropelene tension-free vaginal tape. There's pros and cons to both of these. At the moment I feel like I am willing to take the longer and more painful recovery time that comes with Burch's and the need for a second round of surgery (the prolapse stuff would need to be done separately) on the basis that there is more data that Burch's provides a good and pretty much permanent repair. Has anyone had a Burch's colposuspension? What was recovery like? How do you feel now? Were you offered an alternative and are you glad you chose Burch? If you have had Burch's, did you go on to have another pregnancy? Did the pregnancy mess up this repair?
Thanks everyone X

gailforce1 Thu 18-Aug-11 16:12:57

cardomomginger After your posts from some months ago I often wondered how you were getting on.
When you mention tension free vaginal tape is this also known as trans-vaginal tape (TVT). If so I have recently read some info on this which I will pass on if relevant.
In your position I would take the longer recovery for a pretty much permanent repair. What is your gynae's view on impact of pregnancy on the repair?

cardamomginger Thu 18-Aug-11 16:44:45

Hey gailforce - thanks for checking in smile. Yes, this all certainly is the 'gift' that keeps on giving....
Gynae has always said that another pregnancy shouldn't have any impact on the repairs and with a carefully times ELCS, it should all be fine. I've been kind of sceptical about this and I called him on it in my appointment yesterday. He was emphatic that just being pregnant shouldn't mess it all up. I'm seeing Linda Cardozo for a second opinion tomorrow and this is one of the questions I shall put to her. It'd be nice to hear from someone who's had the surgery what it was like. Maybe someone will come along and post!
I don't know if the tension-free thingy is the same as a trans-vaginal thing. It's polypropelene and is inserted via an incision in the vagina. In case they are the same (can ask that at tomorrow's appointment) it would be great to have the information on this - thanks.
Hope all is well with you? XX

gailforce1 Thu 18-Aug-11 17:37:02

Oh card I fear that this is not going to be pleasant reading for you...
However, given that you are going to see another specialist tomorrow at least you can take this info and discuss fully with her.
My IT skills are so bad that I cannot link you diect so I apologise. The article I saw was in the Good Health section of Tuesday's Daily Mail. The title is "It was a simple implant to cure an embarrassing problem..but it's left thousands in constant pain Incontinence op that's ruining women's lives".
I have checked on DM Health page and the article is about three quarters of the way down. I have also googled the support group mentioned, Messed up by Mesh, and the word Polypropelene is mentioned so I am pretty sure that it is the same.
If this is correct it may make your decision easier as you wont have to choose (trying to find a positive in this!) and it would be terrible if this was the option you had chosen and it left you in an even worse state than you are in now. (Sorry, have not put that very well)!

Please read and let me know what you think. xx

cardamomginger Thu 18-Aug-11 18:05:47

In the middle of DD's tea (literally - it's just gone all over the floor grin) so will have a read after she is in bed. But, yes, he said that erosion, extrusion and infection were risks for the polypropylene tape - but he did say that in more recent years he hadn't seen as much of these problems as he once had. He also said that the long term data on leaving these things inside women for decades just doesn't exist - no one knows what will happen...
Another plus of the colposuspension is that it will correct my cytocele so I won;t need an anterior wall repair. And he had been intending to use collagen mesh for that. This isn't polypropylene - it absorbs into the body over time. But again, if I can get away without having to have any sort of foreign object inserted, all the better. The posterior wall repair doesn't require mesh, so I don't need to worry about that.
X

gailforce1 Thu 18-Aug-11 18:21:18

Its good that he has warned you but from some of these women's accounts it does sound horrendous. It is interesting how the body can recognise and try to expel foreign bodies. A friend tried the coil and her uterus simply expelled it!

How old is your DD now? I hope that you are well enough to be able to enjoy her.

Thanks for asking after me - I have had a good summer with only a couple of infections which is completely different to a couple of years ago when I seemed to have one constant infection. I still maintain a strong supplement regime to keep my immune system in good form and am awaiting the results of a test on my adrenals as I have been feeling tired recently.
X

cardamomginger Thu 18-Aug-11 18:55:35

Just read it. Hmmm sobering stuff... Don't fancy it!

DD is 10 1/2 months. And is fantastic grin. I am very much enjoying her, although I don't have the confidence that I should to go out and do things with her that everyone else seems to.

Glad you are doing better - but sorry you've still had a couple of infections sad. We THINK that my bladder infection has cleared. Finally. Although the only real way of knowing is to do another cystoscopy and take another biopsy - he'll do this at the same time as surgery.

XX

gailforce1 Thu 18-Aug-11 20:41:43

See you have bumped under General Health.
How long will you have to wait for the surgery and what is the recovery time? Hope you have good backup so that you can rest and not jepodise your recovery by doing too much too soon!x

cardamomginger Thu 18-Aug-11 21:44:16

Going privately, so within reasons can plan it for whenever I want it. Have a few social bits and pieces that I want to go to, so will wait until after then. All being well, I hope to schedule this first lot of surgery for first half of October. The next lot of repairs will be 3-6 months after that. Have bugger all help available, so will have to pay for childcare. Will probably be able to get my Dad to cover 2 afternoons a week, and DH can deal with the weekends. But it is still going to cost an absolute fortune [gulp emoticon]. Am going to ask gynae if I can stay in hospital for as long as possible. X

first1 Fri 19-Aug-11 15:00:47

Oh carda everytime I read your posts my heart goes out to you it really does. Have a big drink on me and here's to sorting everything out once n for all grin

cardamomginger Fri 19-Aug-11 16:56:40

Ladies - it gets worse, I'm afraid. Just been to see Prof Linda Cardozo for a second opinion. She reckons I may need a hysterectomy. Am so shocked.

first1 Fri 19-Aug-11 17:06:43

Oh good lord - sorry for the blasphemy, but really, on what grounds?

5littleducks Fri 19-Aug-11 17:24:18

Oh Cardamom - I have seen some of your posts before and mentally sent sympathy your way.

I'm sure you are very shocked - why does she think this? I'm so sorry.

cardamomginger Fri 19-Aug-11 17:33:53

Thanks Ladies. I was too shocked to ask all the questions that I am sure will come to mind. This was a second opinion only, and I will be sticking with my main gynae, so I can put these questions to him. Her reasoning was that I do have a degree of uterine descent but until she "got in there" she wouldn't be able to see whether it was severe enough to need hysterectomy. Her main concern, I think it that the uterine descent shouldn't get so bad that I would end up needing a much more radical hysterectomy where the vagina ends up being shortened.
She says I also need to think about whether I want more children now and if I do get cracking immediately (I'm 40 next month) and hold off surgery until after I've completed my family. But this is destroying me and we don't have a normal family life, so I don't feel I can delay it. I've had conflicting views about whether another pregnancy will cause any repairs to fail (obviously this is a scenario where there is no hysterectomy - or at least not yet). Have posted a question about this in Pregnancy. Prof C is very brusque and basically said that I should just pull myself together. But I can't. I've tried. And I can't. At the end of our consultation, she asked me if I was feeling better, clearly expecting me to say yes. I said no. She seemed put out by this. Not sure how telling me that I might need to have my uterus removed and that I should just pull my socks up is supposed to make me feel better....

first1 Fri 19-Aug-11 17:56:03

Seems she needs to learn some bedside manner. Appalling. And your first opinion didn't give any suggestion of the same idea? I imagine the surgery whatever you have will require several months recovery before you can dtd and ttc again. Would you like more children?

gailforce1 Fri 19-Aug-11 18:18:29

Oh card I am so sorry. I have thought of you today and believed that this appt would help clarify things for you. I'm shocked so goodness knows what you must be feeling. Was there any reason for seeing this Prof? Was it on the suggestion of your main gynae for a second opinion?
Clearly, she had not understood fully what you have been through and continue to go through to make such a crass statement as "pull youself together".
When do see your main man again? In the meantime have you managed to speak to your DH?
Lots of umMn hugs!XX

5littleducks Fri 19-Aug-11 18:52:20

Cardamom,

I'm just going to write down everything I am thinking. I have not read back through your previous threads so sorry if I have misconstrued anything.

First, I'm so sorry that you were treated in such an insensitive manner - I would be in pieces if I was you. It is a horrible dilemma to face, made much harder by attitudes like that. You have been so incredibly strong in the face of all of this and I'm sure that you will reach the right decisions for you.

Secondly, re. whether you have surgery now or TTC first, before you saw Prof C you knew how old you were and so that shouldn't be a new consideration in deciding whether to TTC or have surgery now. So, really she hasn't helped you with answering this question. I suspect that after she bowled the "you might need a hysterectomy" into the conversation it was difficult to think about anything else. Do you have an email address or phone number for her? Would you feel comfortable to go back to her with a list of your unanswered questions?

I have been advised to have TVT but to wait until after my family is complete because pregnancy would "undo" it. My current OB (I am 11 weeks pregnant with DC2) when I filled him in on the whole thing said something along the lines of "of course you won't have the surgery until you are finished having children". I think that the official line is probably that TVT anyway is best left until after childbearing. So, I'm a little surprised at your gynae's advice in this respect. However, it could be that it is just best practice to leave it until after children. I think that you need to pin them down on this.

Thirdly, did Prof C express a preference for Burch or TVT for you?

Fourthly, I hope that she was just being overcautious and oververbalising when she talked about hysterectomy. I guess that all you can do at the moment is ask your own gynae about it sad.

Fifthly, in terms of paying for help when you are recovering, do you have private health insurance to cover the surgery that you do have? If not, just wondering if it would be possible for your gynae to admit you as an nhs patient and do the operation? This was something which my gynae who I saw privately offered to do re having a c section for next delivery. This way you would have more money for the childcare after the surgery. Please don't compromise on making sure you have enough help and giving the surgery the best chance of working for you.

Lots of un-mumsnetty hugs.

cardamomginger Fri 19-Aug-11 20:12:15

Thanks again Ladies. It's so good to have your support smile.

TO be fair to Prof C, I think she does care about her patients and does want what's best for them. But her personality is a bit "jolly hockey sticks" and this comes across in the way she tries to chivvy you along. I've seen other surgeons for other things and I;ve liked this more down to earth matter of fact approach. But not for this. This is very very different. She didn't actually say "pull yourself together" - she used more words than that! But that was the message.

My gynae, Vik Khullar, wanted me to see her because she is a guru in this area. He wanted a second opinion because we both want to make sure that we get this all absolutely right. I guess a good part about today's consultation was that Prof C said that Vik is an excellent guy and that I am in very good and very safe hands with him. Vik wants me to have an ultrasound of my urethral sphincter and I will see him after this - in 2-3 weeks I guess, although I could ask for an appointment sooner just to discuss Prof C's recommendations. As for other questions - I think I will put them to Vik and if we feel he needs to clarify issues with Prof C then he can write to her.

I think the dilemma about TTC is that Vik said that another pregnancy would not affect any repairs and that if I have an ELCS I should be absolutely fine. Prof C says that I need to have kids before the repairs. I am so messed up in the head with all of this that I just can't contemplate more kids. Can't even contemplate sex. So I had been hoping that I could have the repairs, get my life back have a normal family life with DD and DH and then see about more kid when I am more myself. I can't face carrying on like this for who knows how long until I conceived (DH and I were being investigated for infertility so getting pregnant again may not be straightforward). I don't know. I really don't know. I suppose maybe I don;t want more kids badly enough or I;d be prepared to delay the operations. But then I feel so destroyed by all of this that I have no idea what I "really" want any more.

As for Burch or TVT - Prof C's preference is to do all the pelvic floor and prolapse surgery then see how the continence is and then do TVT. She likes TVT because there is a shorter and less complicated recovery period she feels that the risks of a foreign object being introduced do not outweight the benefits of shorter recovery and she has a professional preference for operating thorugh the vagina. I asked her whether in the hypothetical situation that Burch's had the same recovery period as TVT and could also be done through the vagina, what woudl be her preference then. She answered Burch's.

Talk of hysterectomy has thrown me completely. And you are right I need to talk to Vik about this. I think a good question is whther doing all the other surgery but delaying hysterectomy woudl put me at any disadvantage if I had to have a hysterectomy later.

Lastly we have health insurance which covers this. Will see about any ELCS. But childcare is going to cost thousands....

Thanks so much everyone for taking the time to read and to respond. And thanks for the hugs. Going off line until Sat night. Hugs back XXX

first1 Thu 01-Sep-11 12:14:47

How are you getting on carda?

cardamomginger Thu 01-Sep-11 18:57:19

up and down... had to have the cat put down last night and tbh i'm more upset about that right now sad. seeing gynae (my nice one!) tomorrow evening for urethral sphincter ultrasound and to have A Long Chat about everything. i've thought of what i hope are all the relevant questions, especially about the hysterectomy. hopefully, even if i don't get all the answers tomorrow, he'll have a list of things to clarify with the prof and i should have final answers soon. and then i can start planning for the surgery. gulp. it's taking so long to get this far that actually going for the surgery almost doesn't feel real!
thanks for checking in on me smile. how are you doing? XX

first1 Thu 01-Sep-11 19:22:38

Sorry to hear about the cat sad

I hope you get all the answers tomorrow. I admire you for waiting so long to have the surgery. By the sounds of it my op was a lot less invasive than what you require (perineal refashion and low grade rectocele repair which I didn't know I needed til I woke up) but the pain was so much I had it 12 weeks postnatal. I must be a wimp! Anyway that op was 12 months ago now and it's not still not "right" but I know I'll be having an elcs next time and I've already had it in writing so I can live with as it is. Movicol is still my friend. Not due to the tear but a fissure. My oh my how I'd love to poo without a little sachet for help! I'm getting a bit more confident with having sex now. I didn't attempt it until December last year but it hurt soo much probably more psychological fear but it put me right off until May. I've seen a psychosexual counsellor because I was so fearful. Irrational yes. But I can tolerate it now, not exactly porn star positions but that and having hollywood waxes again it's progress! I still see my consultant every couple of months which is fab just for my own piece of mind.

So sorry realised only now how much I've rambled and my sausages are now black...

cardamomginger Thu 01-Sep-11 20:27:43

Glad you are getting some nooky grin. Oh God yes the fear!!! I might think about seeing a psychosexual counsellor - I'm starting trauma therapy next week, so that might go some way to helping me deal with that side of things. I really wish I'd been in the position to have it all done sooner. But what with infections and there being quite a lot of problems it's just taken this long to get it all diagnosed. One positive that I forgot to mention is that I sent off my letter of formal complaint yesterday. Made four points, all of which I am sure they will deny or try and wriggle out of. But what happened to me is in black and white and they have to read it and they have to discuss it and they have to think about it. Quite how I will feel when I get what is almost inevitably going to be a letter of denial and excuses, I don't know. But right now I feel calm and positive. Sorry about your sausages!!

first1 Thu 01-Sep-11 20:53:44

That's great news. Well done you for doing it. I'm proud of you smile

When you're back in working order we should go for a coffee with the babies if you're ever up to it

cardamomginger Thu 01-Sep-11 20:56:10

Yes please! But can we make it a glass of wine grin. XX

first1 Thu 01-Sep-11 21:31:24

Yes! I regretted my coffee choice as soon as I typed it! Wine wine wine! Xx

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