Hi there. Happy Easter to you all. I'm 2yr 3 months post radical hysterectomy for 1b1. 3 months after the op i was admitted with sepsis. Stemming from me not fully emptying my bladder. I've been on antibiotics since then on and off. I keep getting retaining pain. I'm under a urologist who's yet to get an answer. Looks like self catheterising is the way forward which im filled with dread about.
Has anyone self catherising or had been and does it help? Hoping someone can help I'm not sure where else to go with this.
I'm not able to offer any help but I'm so sorry that you're still suffering post treatment. There is a really helpful lady with the user name Jazza who I believe also self catheterises. Maybe do a quick search and you'll probably be able to find some posts.
Ahh bless you. Thank you Emma. So kind to reply. Hope your well. I will have a look for Jazza. Feeling a bit disheartening now it's been going on a while.
You're welcome lovely. This is the joyous gift that seems to keep on giving! I'm doing ok, it's a mental battle everyday to not let the irrational thoughts in and live my best life no matter what. much love to you xx
Personally, I'd look into seeing a gyneurologist as they deal with everything from the waist down and deal with just women. Possibly paying privately for thr initial appointment and then asking THRM to see you at their NHS clinic after.
Also ask about dmannose and hiprex as it takes at least 9 months for the bladder walls to renew and eliminate infections. London based I know of a few gyneurologists and pelvic pain specialists if you require them.
I've been self catheterising for about 4 years ever since my radical hysterectomy in 2017. I couldn't pee naturally at all immediately after my op so was totally reliant on catheters to begin with. After a few months I was so very grateful to regain some natural bladder function albeit I still retain 100-200ml urine and need to self cath about 3 times a day.
It seems there was a lot of nerve damage during my op and 4 Urologists have told me that things are about as good as they're going to get. There is one thing I wonder about that I haven't investigated which is sacral neuromodulation; I don't know if I'd be a suitable candidate but I've decided to keep the status quo for now.
If I don't self cath I find my bladder starts to feel irritated and I seem to start retaining more urine. And although I've never put it to the test I'm sure I would be getting a lot more infections; I've had 2 UTIs since autumn 2018 which isn't too bad going. Self cathing isn't exactly fun but it's definitely the lesser of evils; there is a wide range of catheters to choose from and the technology that goes into them is pretty clever so should be grateful for that really.
When I first realised I would have to self cath, for the forseeable future, I was devastated and sought counselling for the first time in my quite long life (I'm mid 60s). I've adapted and learnt to live with it; there are some very supportive groups for self catheterisation on Facebook. Happy to answer any questions - either here or you are welcome to pm me if you wish.
I don't know where you are, but dr Baranowsk at University college London is amazing at sacral neuromodulation I believe. My mum was under him. First saw him privately, it was costly but only for the first appointment, he ten put her on his NHS waiting list and saw her as a regular patient. Amazing, wonderful man.
Many thanks for the heads up about Dr Baranowsk at UCL, I'll make a note of him. I think one of my reservations is that I've got lymphoedema and I'm concerned that any invasive procedures near my swelling (anything below my navel) could make things worse.
I'd seriously see him as he knew his stuff and wouldn't chance doing anything that would risk more pain. Another doc recommended a different spinal nerve stimulator for my mum but we saw Dr B and he was very polite about this other doctor but basically said he hadn't got it right and wanted to actually test and observe mum and then once he did he came up with a different plan on action.
I looked up Dr B and he seems to be focussed on pain management - I don't have much pain with my bladder; I was thinking scaral neuromodulation might be a way of getting my bladder to function better so that I don't need to use catheters. I'm not sure Dr B is offering exactly the treatment I'm thinking of although I know very little about it; it's possible I mean sacral neurostimulation - I'm not sure.
My concern about an invasive procedure is there is always a risk of infection with such things; infection with lymphoedema is potentially very serious and could make my swelling irreversibly worse. Managing lymphoedema well involves minimising the risk of infection e,g, daily skin care, avoiding cuts and bites etc etc. - it's a nightmare.
I've bookmarked a couple of things from the web about Dr B. Just to check I've got the right one - do you mean Dr Andrew B?
Yes, Andrew B. Otherwise Miss Elneil is a Urogynecologist. Again private and NHS. She might be able to suggest where to go or if she can help. Extremely helpful and insightful.
Maybe emailing there PA to see if they can help or if they could personally recommend someone who could help? I've got pa details. I'm seeing Dr claudine domoney who has lectured at the Royal Marsden, based at the Chelsea and Westminster and also private. She has helped with my hormones and has hit the nail on the head 100%.
If it's Miss Sohier Elneil you mean, I've found her secretary's contact details. I've also found contact details for Dr B. I'm certainly interested to have some conversations regarding how I might go forward from where I am.
Pleased to hear you are making good progress with your hormones. I recently started using topical oestriol cream (Ovestin) - so far so good - my urethra seems to be in better shape now.
My next thing on my list is a colonoscopy, but that's another story.
Yes, Miss Sohier Elneil is amazing. Extremely insightful and helpful. I've got her pa email if you require it. I'm sure she would pass on your concerns and Miss Elneil would give you her honest opinion if she could help you or who could help you. She has been wonderful for my mum.
Hi ladies. Thank you for responding. I had an ultrasound yesterday as been getting pain. There are no growths or cysts on my overies which is a relief but he did say I wasn't emptying my bladder. So it looks like this is still the issue causing the pain.
thank you Jazza for your reply I think I'm going to have to persue the self catheter idea it looks like this issue is here to stay Just feel really disheartened about it I'm a swimming teacher and really don't fancy doing it at work :-( I'm still on antibiotics until I can get to see my urologist so nothing has been given to me to try as yet
I too get lymphadema in my groin / top of thighs Do you have any recommendations how to help this?
I feel 2 years down the line and I'm falling apart aches and pains all over and then the bladder issue not helping I really appreciate you replying thank you
The idea of self cathing is a daunting one and it will take a bit of getting used to but you will find ways of fitting it into your life. Obviously you have some natural function, as do I, so you may only need to self cath maybe 1, 2 or 3 times a day - you might find you don't need to do it during work hours; however if you do need to do it during work hours then your work place has a duty to make reasonable adjustments for you - disability rights . There's nothing to lose by trying self cathing; my top tip is to try different catheters as what suits one won't suit another - I've found a catheter that works well for me but there are some that I really don't like.
Tbh I find my lymphoedema more difficult to cope with mostly because It's gone into my foot. It is generally reckoned that the 2 most important things in managing lymphoedema are skin care (to prevent cellulitis) and wearing compression garments (to stop the swelling getting worse). Swimming is a great exercise for lymphoedema so you're onto a winner there. Some people find that manual lymphatic drainage (MLD) massage works well and there is a version of it that you can do on yourself called self lymphatic drainage (SLD) massage. Ideally you need to be referred to a lymphoedema clinic - ask your GP; my first GP misdiagnosed my lymphoedema as a pulled muscle but I had better luck with the second GP I saw - not all GPs are up to speed with lymphoedema so don't be put off getting a second opinion if need be.
If you are interested in cutting edge treatments for lymphoedema and are prepared to go private than I would suggest looking at the website for the Oxford Lymphoedema Practice: www.olp.surgery. I had an assessment at the OLP and can personally recommend them - unfortunately I was not suitable for the treatment I wanted.
