I have been wondering if anyone else has experienced these issues post hysterectomy?
I'm 39 and 9 weeks ago I had a total laparoscopic hysterectomy (ovaries kept) following treatment for high grade CGIN, I'd already had a LEETZ treatment which did not show clear margins so a hysterectomy was advised by my consultant. Thankfully the results of the hysterectomy have come back all clear.
I'm now really struggling with my bladder. It started to leak 3 weeks post surgery and is still leaking.
I've noticed the leaking is worse when I change position and when I'm walking. I walked to the shops today and although it's only small amounts, it didn't stop leaking until I used a toilet (by which time my pad was full) even though I'd been to the toilet before I left.
I can feel when I need the toilet (more urgently now) I just can't seem to control the leaking. The leaks are continual small amounts but when I'm moving if I have any fluid in my bladder I can't seem to stop it.
I've seen a urogynaecologist a few days ago and he examined me and scanned my bladder and said it looks fine. He's put it down to my bladder becoming overactive after the surgery and has given me medication to see if that helps control it. The medication can take 4-6 weeks to start working (it's only been a few days but my bladder has been worse and leaking more since seeing him after he examined me).
Has anyone else experienced any bladder issues similar to this? Did the medication work?
I've have bladder problems ever since my laparoscopic radical hysterectomy in 2017. However, my problems are fairly opposite to yours because I have urinary retention (need to use to use catheters) as a result of nerve damage although I also have a degree of urinary stress incontinence which I manage with panty liners.
I was referred to a continence nurse for help with my urinary incontinence and she recommended pelvic floor exercises which I think helped a bit. I was also referred to a womens health physiotherapist (mainly for vaginal issues) and she also gave me some helpful tips about my bladder.
I've not had any medication for my urinary continence issues apart from a very short course of something to try and stimuate my bladder nerves which didn't work; I don't have any experience to share about the type medication you are on.
Although my bladder problems are fairly different to yours I can empathise with some of what you are going through. I've been on this forum for a while now and I get the impression (rightly or wrongly) that profound long term bladder problems following surgery for cervical cancer are fairly unusual . I have found some useful support for my bladder problems on Facebook; also the 'HysterSisters' website might be worth a look. As your bladder has got worse since the medication I would suggest calling whoever prescribed it for you or maybe see your GP.
Incidentally, was yours a radical hysterectomy which includes removal of the top part of the vagina?
Thank you so much for your response and I'm very sorry to hear about the problems you've also experienced.
I didn't have a radical hysterectomy, I had a total laparoscopic hysterectomy which removed the womb, cervix and fallopian tubes, my ovaries were kept.
I'm only 10 weeks post surgery so it's still very early days in terms of my muscles/nerves recovering I guess, however I didn't have bladder issues prior to surgery so something has unfortunately been damaged during the process, it's now just a case of trying to work out what that is and how to try and manage it.
Thanks for the information on the online groups and websites that may be helpful. Do you have the names of any Facebook groups that you think may be helpful to me?
I do have private healthcare through my employer (something that I don't really take advantage of as the nhs have been so good) but I'm going to use it for these bladder issues if I can.
I've already spoken to my GP following my appointment with the urogynaecologist last week and mentioned the medication he prescribed and the fact that it's getting worse (mostly with movement/walking, which isn't ideal). She is happy to do me a private referral as she was surprised that when they examined/scanned my bladder they asked me to completely empty it, the leakage problems happen when it has fluid in and with movement so there must be some tests that can be performed to see what's causing the leaks when it contains fluid. In addition to this she also said because I'm only 39 and don't have children she thinks more investigations should be carried out because it's not normal for this to happen with no previous damage to my pelvic floor and the surgery has obviously had an impact on something somewhere.
In terms of facebook the Bladder and Bowel Community Support group has a large membership so might be a good place for you to start. Otherwise type keywords into the facebook search box for groups that seem relevant for your specific problems. It might also be worth contacting Bladder Health UK at: https://bladderhealthuk.org/ - I had a couple of very helpful discussions with their urogynaecology nurses on the helpline.
I would have thought that your surgery would have posed less of a risk for bladder damage than a radical hysterectomy so hopefully you have a reasonable chance for an improvement. In my case the surgeon was having to work very close to my bladder as my cancer was more to the anterior of my cervix i.e. very close to my bladder. The fact the top half of my vagina is missing may also have an impact on my bladder function. I seem to have been almost uniquely unlucky in terms of nerve damage to my bladder although I've come across 2 or 3 other ladies with similar problems after much on line searching - I ended up seeking counselling because I found it so hard to come to terms with it.
I'm not sure what further tests might be useful for you; I had a video urodynamics test which enabled the urologist to determine how my bladder behaved as it was filling with fluid and then how it was able to expel fluid. The test also enabled the urologist to diagnose me with 'genuine stess incontinence'. It's good that you have private healthcare; I had to work my way through 4 NHS urologists to get all the tests and answers I needed!
I am similar to you in that I've not had any children and no gynae procedures prior to my cancer treatment; my bladder problems are clearly attributable to my hysterectomy although my medical team have suggested that the radiotherapy may have prevented the nerves to my bladder recovering as well as they might have.
Thanks again for taking the time to reply. I'm so sorry to hear you've had such a terrible time, I do hope you are now on the road to recovery.
I'm finding it very difficult atm, my bladder seems to leak whenever there is fluid in it and whenever I move or walk. I'm having to plan every trip or walk around there being a toilet in close proximity and it's really getting me down.
I'm hoping they can perform some tests with my bladder full and with movement so they can try and see what's causing the leaking.
I've contact my private healthcare provider so hopefully I'll hear back from them soon. I may as well use it if it's available, although the NHS have been very good they are just very stretched atm which is totally understandable.
