Anyone else had to be catheterised?

[Littledisneyprincess]

I was unable to pass urine, and has resulted in a few days in hospital and a catheter due to the damage of endometriosis. Still got the same amount of pain and now I have a catheter!

[Faith27]

Sorry to read your difficulties hun. I agree that the comment is insensitive and inappropriate. Why bother replying if that's your attitude on the matter?

We should all be kind on here and offer up support and if that's too much to ask then don't be on here!!

Sadly I have no experience or personal story to share about catheters and endo but I can really empathise that this is a worry for you. Quite often specialist centres aren't accessible in the first instance as investigations from what I've read are normally done through a general gaeny.. even so that doesn't mean that what you are experiencing is in result of this so people should just mind their own business.

Hopefully some kind people will share their experience if they have knowledge or similar experience with you to give you guidance but in the meantime I hope you are doing ok and wish you well for a full recovery soon.

Do chat to your medical team if you have any concerns or medical questions of course xxx

[Faith27]

It was the way in which the advice was given. Thank you for your reply. The comment was deemed insensitive by the original poster and I agreed. I see it's now been removed.

The actual advice you have put above and information you have shared is very useful, it was merely the way in which is was given first time around that wasn't very sensitive given the poor ladies situation - she shouldn't have to remove the post because the replies weren't supportive because there are plenty of people here willing and happy to give advice and support so I didn't feel she should be put off by this.

Take care.

[Bella_jane]

After surgery I was taught to self catherterise and it was extremely painful each time. And not just painful but also scary when your body just seems to forget how to do something you’ve done your whole life. They gave me a numbing gel which helped MASSIVELY - would definitely recommend it if you can get your hands on some

[Littledisneyprincess in reply to Bella_jane]

Thanks @Bella_Jane they have catheterised me just now for two weeks at least but have mentioned that I may need to self catheterise. I will make sure I get the gel. Can I ask how often you had to do it?

[Bella_jane in reply to Littledisneyprincess]

I only had to do it two times a day but I wasn't drinking massive amounts at the time. My sister in law has to self catheterise every day and has done for a long time now - I think she said she usually does it about four times a day

[Janeylou]

I am so sorry to hear your in so much pain. Have they talked through what’s next? They can’t leave you like this, it’s such a hard time for you the last thing you want is a battle to get right help, unfortunately lots of women have to battle for the right treatment. I only say this as I do feel there are treatment options for you.

I am currently going through a similar situation, I am lucky I’m under specialist in Dorset, Mr Carpenter. With me the endometriosis has spread to my left Ureter and caused a blockage and my kidney went into serious acute kidney injury, I had this stent put in to help my kidney to drain fluid, it’s still very painful, had some surgery in December, but have more in March as they need a Urologist to come in & rebuild my Urether and connect back to my bladder.

The pain some days is awful, bloat comes and goes especially when at work! Heat really helps, drinking lots I mean lots of fluid and odd pain med here & there!

Lots of healing wishes to you.

[Littledisneyprincess in reply to Janeylou]

Thank you so much Janeylou.

At the moment I have a catheter for up to two weeks. I am passing urine but still in a lot of pain. They didn’t speak much about post two weeks other than I may need to self catheterise and potentially more surgery with urologist involved.

I just can’t believe how fast it came on and here I am with a bag! Don’t get me wrong I frequently can’t pass urine and when I do it’s burning but never been so bad.

You sound like you are having a time of it, you poor thing.

I hope your next lot of surgery gives you some relief x

[Janeylou in reply to Littledisneyprincess]

Wish you all the best, this group can really help, can feel so alone & down with it all, so keep talking. Sometimes good to share experiences x

[Littledisneyprincess in reply to Janeylou]

Thanks, you are so correct it’s really difficult one minute your at work then boom, I thought I was managing. Now I am catheterised and still feel bursting for the toilet, and the doctors don’t realise how much of a big thing this is, and how unwell you feel not being able to empty your bladder. Thank you for your support x