stress incontinence - my colposuspension journey

[FantasiaTurquoise]

Had a laporoscopic colposuspension last week and thought I'd start this thread as I couldn't find many recent accounts on mumsnet when I was looking last year. I can't talk about it with friends but can do so here at least and hope it helps someone else.

-SUI for over a decade, started when I was pregnant with my first.
-2 mild prolapses diagnosed during examinations for the above
-Have tried contrelle, efemia, pelvic8 machines and seen 3 different women's health physios. Being honest had stopped with kegels as never noticed a difference but the latest said my pelvic strength was decent (4/5).
-Massive impact on daily life and self esteem - felt it was 'my fault' for not doing kegels enough. But then loads of women don't and they don't suffer like this.

Just assumed this was my life and saw it as a shameful secret I'd have to get used to - not going anywhere without planning toilet visits, leaking even if I just raise my voice or walk fast, dehydrated in summer, dread coughs and colds in winter... if you're reading this you know what I mean.

Saw a gynae for something else last year who said there were options and referred me to a urogynae consultant. Urodynamics test to confirm sui (confirmed as moderate which is between mild and severe) wasn't fun but the consultant was lovely and they do this all the time so it wasn't as embarrassing as I'd feared. Also said it really wasn't my fault and that often the urethra becomes kinked or moves slightly and kegels won't fix that. Told that colposuspension is the gold standard and that they can do it keyhole now.

Considered bulkamid injections but they said it's 50/50 whether it works and decided I'd probably end up with colposuspension surgery anyway so may as well go ahead, especially as I could have it keyhole. I don't think I'd have made the same choice if it had been open surgery as can't afford that long off work.

Full disclosure: I have health insurance through my work so was able to choose the date and consultant. I didn't like the first consultant I was referred to so switched a few months ago. My insurance always refused to deal with SUI as a complication of pregnancy (eldest is at secondary school!!), but took the new referral from the urogynae.

Had the procedure a week ago. First 48 hours were v uncomfortable but pain was well managed and the catheter was removed after 24 hours. Came home after 2 nights in hospital. Just 4 tiny scars and after 3 days I don't even need paracetamol, just laxido to avoid constipation. I was able to walk after 24 hours and have been for a walk every day. Stomach area feels a bit heavy but no pain. The worst bit was the bloating from the laporoscopy gas. That was SO uncomfortable and worse than I'd anticipated but also copable with as I knew it would get better and it has almost gone now. Tired for the first few days and still get dizzy if I overdo it so need to listen to my body.

Advice is to walk daily but avoid exercise for 6 weeks and avoid strenuous activity and lifting any weights for 3 months so that scar tissue can form and hold the bladder in place.

Too early to see the effects but I can post again in a few weeks if helpful. But the procedure itself was much less scary than I'd feared and I will definitely be back at work after Christmas although taking it easy and maybe working from home a bit more at first.

I just hope it makes a difference... It almost feels too much to hope for but other mumsnet posts have been positive so lets see!

Thank you for posting. I’d never heard of this. Is it supposed to last forever?

I don't think so. But also not just a short term thing. 10-15 years seems doable from the data. I hate the thought of needing it again in my 60s but will let future me worry about that! Maybe there will be other options by then.

HI, thank you so much for posting this. I have a consultation for this procedure tomorrow and was researching it ready to ask questions. I was nearly in tears when I read the information as it sounds so invasive, but like you I have tried so many options over the years and it was agreed that it was probably the birth of my eldest that did the damage. She's 30. Your post has given me a much more positive view of it. Unfortunately I am on a waiting list for NHS, so no date yet, but happy to know that they will get to me eventually. It's been such a journey to get here. Good luck with your recovery and please do updateLPR

I hope your appointment went well. Happy to answer any questions if helpful. Obviously very invasive inside, but from the outside you'd never know - 12 days in and tiny scars, no pain, my main symptoms at the moment are from the movicol they gave me to stop constipation. And tiredness. I do still feel very tired and I know if I overdo it, but have been for a walk every day and if I wasn't signed off work I even feel like I could work from home next week if I needed to. The hard thing is the uncertainty - I have no idea if it's worked yet as haven't been active enough for leaking to be an issue.

Please post further updates as I would love to know how things go after this procedure. I have just had my referral sent to the specialist which should start the process post Christmas. I am lucky that I have private health care through work. I hope you continue to recover well and things start to improve for you. Take it easy and don’t rush things! Best wishes.

Hi, thank you so much for responding. I met my consultant yesterday and really liked her. It helps that my friend is an acquaintance of hers and had a procedure with her some years ago (the blue mesh - very successful for her). She does not do key hole but assured me that the scar will be very low down and that the recovery rate is more or less the same. She also told me that the recovery time is 8 weeks and that for the first 6 weeks I am not to lift anything heavier than a kettle! This will be my biggest challenge and also that I will need to have a considerable amount of time off work as I can't do anything physical, no matter how slight. I wondered how long you are signed off for? I could be referred for keyhole but that will be in a different hospital, further away and I have looked into private as we do have some level of cover, but that hospital was even further away. I am happy to stay NHS and local, and with a possible date in the spring. I hope your recovery is going well, and please keep posting. I am so happy to have found someone else on this journey.

I'm signed off for around 4 weeks but I have a desk job so can easily work from home some of the time and no lifting involved. I feel like if I had to work from home next week I could do it as I am a bit more tired than before but my concentration is fine and I'm not in pain. Not sure how different it would be with a proper incision scar though. I found this online which is much less scary about the 'nothing physical' guidance. It says 'The old fashioned advice was to wait for four to six weeks but we now know you should do what you feel like.'
www.ruh.nhs.uk/patients/patient_information/GYN045_Colposuspension_Operation.pdf

Hi and thank you for sharing your experience.
i am 49 and giving another go at Kegel and women physio but it is hard to feel any difference and i just want to give up!
please do update - i would be very i terested to hear about your recovery
wishing you well

Hi, I hope you're still continuing to recover well. I just read the link you sent and it is much more reassuring. My consultant is probably a few years older than me and quite old school. On the plus side, she's obviously been doing these ops forever. I was actually more worried about the recovery than the op as I find it impossible to sit for any length of time. Take care.

SUI??
Is that Sudden Urinary Incontinence please?

Acronyms are not always understood.

Hi!
I am having this operation on Friday - non keyhole on the NHS - I wondered if you had an update on your recovery?
im nervous!
x

Don't be! I'm not sure how much of a comparison it is as mine was keyhole so no incision or scars/stitches but there was no pain at all from my bladder and I really felt pretty normal after a couple of weeks. It's now nearly 5 weeks on and I'm back at work as if it had never happened. The frustrating thing is that I can't really tell how well it's worked under true pressure because I still mustn't do any running, jumping or lifting BUT I do think it must have worked as before I was wearing a pad every day and I've not worn once since I got home from hospital. Literally not one. I'm so frustrated with myself for already not being able to remember what it was like but I know I had to wear the pads and I would often leak just walking or sneezing so this already feels life-changing. Really good luck - I hope it goes well for you x

Hi, good luck for Friday. Please do post how it all goes as I am on the NHS waiting list for non-keyhole. Take care.

Hi, glad it's all going well, hope it continues the same.

The S is for stress. Like the stress on the bladder from coughing, sneezing, jogging.

Hi again! I had my open Colposuspension on the nhs on 16/1 as an inpatient. I was first on the list so was asleep for 9am and awake by 12, can’t recall anything before 12.45 though that’s the first time I remember looking at the clock as I was shocked I had been asleep so long. I woke up terribly from the anaesthetic and had terrible sickness. This was my first ever GA (I’m 31 so on the young side for this op) so didn’t know what to expect. I had to have 3 different varieties of anti sickness before the sickness stopped and I was allowed out of recovery (by this point 2pm) when they had told my poor husband I would only be around 2 hours from 9am. The worse part about the whole thing for me was being sick after abdominal surgery. I know this isn’t uncommon but I just was really not prepared for that at all. I was put on a morphine pump that I could press when I had pain and after the sickness had stopped I spent the rest of the day in and out of sleep. I ate 1 ginger biscuit and a few mini cheddars at around 9pm but still felt terribly queasy was just at request of the nurses looking after me lol. I barely slept that evening as my blood pressure was so low they kept coming to check it every hour, and between the catheter post surgery and the incision I really could not find comfort. I had IV fluids overnight as due to sickness hadn’t drank really. They wouldn’t let me try to get up till 9am yesterday morning when my BP had reached the 90s and they removed my catheter. They told me to drink sensibly and try not to force needing a wee just to listen to my body. Eventually I felt need and got up for the toilet for the first time with assistance and had a wee at around 12. As soon as I had been up and had a wee I immediately felt better, I had started to fancy something to eat and had a craving for McDonald’s chips so my husband went to get me some and I did eat them. I kept sipping water and by 3pm had done another wee. 2 wees is the guidelines and they said by that point they could request discharge which shocked me cos I did not feel ready to leave the hospital but alas by 7pm I was home with lactulose, blood thinners, 2 x antibiotics to avoid cystitis and infection in wound as well as strict pain relief instructions (ibru, para & codeine when required). I slept much better at home albeit on the sofa so I could be more propped up with pillows and have hobbled round the house this morning assisted by my husband and 9&6 year old to have a wash and freshen up. I actually feel much better for being home and more mobile however my wound is more painful today and I feel like I am starting to need the toilet which is terrifying me as I can’t strain at all. If I’ve needed to cough at all it’s been horrendous on the wound. I can’t comment on results of the op at all yet but can definitely feel it feels different to wee and flow is slower I almost need to concentrate to wee but they did say that is normal whilst it’s still swollen/ bladder ‘traumatsied’ from surgery.
sorry if this scares anyone I just wanted to give my honest account of what I experienced and when I can comment on the results of the actual op I will do.
xx

Thanks for sharing… im debating whether to make a HP appointment to discuss.. please update us soon.
Wishing you a good recovery xx

Hi, glad to hear that you feel that things have gone well despite the sickness. Scary that they sent you home to family life so quickly. Wish I'd had this done when I lived in Germany where you get an automatic offer to go to a specialist rehabilitation hospital after surgery. I can't tell you how grateful I am that you are sharing your story. I know I need it done, having a dreadful cough last week really highlighted to me how important it is but I live in fear of the appointment letter! Wishing you a continued good recovery.

Thank you for taking the time to post your progress after your operation. You poor thing, sounds like a very traumatic time. Such a shame they have to discharge you so quickly, another night might have made so much difference, just to have the extra nursing support when you feel very vulnerable. I hope you continue to improve and the pain eases soon. Please keep us updated as time goes on. I have my appointment with the consultant at the end of this month to discuss the same procedure. It helps to share and read these posts, please keep sharing. Best wishes.

So glad you have shared your experience and hope you feel better soon. I'm really glad that we have a live thread on this now as I would have loved this when I was trying to make my decision and hope it is helpful for other others.

It's mad that they let you out so quickly after surgery but I agree that it's nicer being at home. I couldn't sleep at all in the hospital. It's very different with keyhole because there's no wound, just 4 tiny incisions. The one in my belly button had a couple of tiny dissolvable stitches I think, and the other 3 were just surgical glue that peeled off after a week or so. My main problem in the first week was feeling bloated from the gas they use to inflate the area, but that went after a few days.

I was also terrified about needing a poo but came home on 2 movicol sachets a day, which was actually too much for me but definitely meant I didn't have to strain at all.

I was the same with weeing though. Everything felt a bit off for the first few days because my bladder must have been quite traumatised. I also couldn't stop myself weeing when I had a shower, which worried me that it had all failed, but that is also normal and part of the trauma to the area. I actually found ChatGPT very reassuring in the early days and found that things settled quite quickly. But basically don't read anything medium or long-term into these first few days. Your body is still recovering from a big shock to the system. Just rest and look after yourself xx

Hope you are doing ok shanjw.

I've just been for my six week appointment and the consultant was very happy with how it's gone. He managed my expectations well - said that if I do strenuous exercise, or jump on a trampoline after drinking a glass of water I may still leak a bit. But to be honest that would put me in the same position as anyone else who's had a couple of kids. What isn't happening is the daily leaking. For example on the way to the appointment I treated myself to a coffee and then walked for half an hour, without a pad on. I would never have had the coffee before in case I sneezed and leaked.

His advice was to leave it till around the three months mark before doing any exercise that will put pressure on my pelvic floor because he wants scar tissue to harden around the stitches to keep them in place.

I'm still learning to trust that things are different now, and feel I haven't really tested my newfound bladder capacity that hard, but on a day-to-day basis it has made a massive difference, physically and psychologically.

My consultant is a laparoscopic surgeon rather than a urogynaecologist, although I was referred to him by one of those. He said he thinks this is a good operation and he usually sees good results with it.

Will keep you posted!

Thank you for starting this thread Fantasia and thank you for your latest update. It’s great to read that you are doing well post op and I hope you continue to improve and feel much better. For those of us that are just beginning your treatment journey it’s reassuring to read your positive feedback. It’s difficult trying to decide what is the best decision going forward so any extra information is very helpful. Good to know that your consultant recommends this operation. Keep taking things slowly. Best wishes.

I have my appointment date for keyhole colposuspension on 30th, March. Still very worried about the whole procedure but good to read your posts, really appreciated.
I hope that you are making good progress after your operations FantasiaTurquoise & Shanjw. How are things now?

Honestly it was so much less scary than I'd feared. The first 2 days were a little painful but nothing awful and uncomfortable with the catheter and nausea/bloating from the gas they use to inflate you, but I just rested and watched netflix on my phone in the hospital and walked up and down the coridoor a bit to get myself moving. Do take pain relief if they offer it though - I had tramadol in the hospital and paracetamol when I came home - and make sure they send you home with some movicol so you're not straining when you poo. Then there were 2-3 few more days of bloating which were uncomfortable but not horrendous, and once that had passed I genuinely felt ok. Tired and a bit delicate, but able to go for a walk. I'm still building up slowly with actual exercise - surgeon says wait til at least 3 months before lifting weights etc - but other than that I am back to normal and so glad I had it done. I had a cough the other week and normally that would have meant wearing a big pad and changing it 2-3 times a day, but now no leaks!

That’s so good to hear, I’m really pleased for you. It’s great that things have improved and that the outcome is good. Amazing no leaks when coughing! At least the pain and discomfort from the operation was worth it. I really appreciate you taking the time to post more updates. I will make sure I come out of the hospital with some movicol!

Make sure you still take thing easy and give yourself time to recover fully. Best wishes.