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Endometriosis UK
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5th lap coming up but first one recovering with catheter in place for 2 weeks. Terrified of this as I already have IC - has anyone had this?

Hey everyone,

Hope you’re all having manageable pain days. I’ve got my 5th lap coming up in a few weeks so I’m used to lap recoveries. This time however I am having extensive work on my bladder and have been warned that I’ll most likely have a catheter in when I wake which I’ll keep in for 10-14 days.

I have interstitial cystitis already and have had work done on my bladder before so I am acutely aware of how painful bladder recovery is. I am terrified of having to deal with a catheter because of the pain this may bring.

Has anyone got any experience of dealing with a cath for this long/ in general how was it to deal with? If possible please don’t share absolute horror stories 🙈 I’m nervous enough as it is! But anything constructive or some help and advice would be really really appreciated right now.

Thank you 😊 xxx

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Hello!

I had to have a catheter in after my lap, but not as long as you say... only a week! I say only... it was quite a while.

I only had to have mine because my bladder couldn’t empty properly! And I went back the day after to have it removed and try again and still couldn’t wee so they put it in for a week, just so my bladder could recover.

I know you’ve asked not for horror stories etc but I don’t want to lie to you! I’m going to be honestly truthful.

I was literally so scared when they told me I needed to go home with a catheter. I remember when I was a student nurse inserting them into the dummies we had and I was like omg this is horrific haha!! My toes were curled for sure.

But the insertion was fine. A little odd feeling but wasn’t as bad as I thought and it was over and done with in seconds! They put numbing stuff there too. I did have a HCA do mine and she put it in the wrong hole the first time haha! So I was like great as obviously that don’t hurt at all!!

I went home with it and it was weird for a few days, I felt like my recovery may have been slowed down but honestly was all in my head. I was just so nervous that I’d pull on it.

But it was actually okay! Sleeping and not having to get up for a wee is a godsend haha! Just look at the positives.

My partner was amazing and helped me empty it etc and put the night bag on at bedtime.

You do get used to it though!! I had to take antibiotics just in case of a UTI and I got one anyway which I’m still fighting off really now... but that’s not the end of the world.

The only thing I’d suggest is to ask for a shower cover. They didn’t give me any or any spare straps. So when I had a shower we had to tape a bin bag over my leg where it was all strapped down!! And even then the straps got wet and I didn’t have dry ones to replace them with. So that really irritated my leg and I had a rash... so I’d ask about that!

Anything else to ask just let me know :) but don’t worry too much! Xx

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Hey :) thanks so much for your reply. Please can you clarify what you mean when you say you’re still recovering from your UTI? It’s things like that which just worry me as my bladder is so sensitive 🙈 what was it like when they removed it? Was your bladder able to get back to normal fairly quickly? Xxx

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That’s okay!

It’s not a bad UTI, I’m on more antibiotics. But I think it’s because I had it removed and another reinserted. So obviously I had more chance for bacteria to get to bladder etc.

But I also had thrush, at the same time as the catheter! And it was really bad, I always get thrush if I take antibiotics! But they wouldn’t give me anything for it, luckily at home I had some pessaries. I had that for a little while too, had to do three pessaries in a row!

Just make sure you clean it properly too. Obviously bacteria/germs can travel on the tube etc, so just make sure when you empty the bag it doesn’t touch the toilet etc etc!

It was so weird when they took it out! The first time I had it out it hurt, but I had a really horrid HCA who was so far up her own backside I swear she didn’t deflate the balloon on purpose!

The next time I had it out it didn’t hurt one bit, but obviously I was so nervous about it hurting from the previous time... I told the nurse and she said it shouldn’t have hurt at all!

The first wee I had was so weird, felt odd!! But was fine. I just had to do a big enough wee and then they scanned my bladder to make sure it was empty etc. And that was it! Xx

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That’s really helpful thank you lovely! Xxx hope everything starts to calm down soon!

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Hey Catness,

Can I ask are you having bladder surgery? I recently had a bladder restriction because endo had grown all the way through. I had to have my catheter for quite a while after. It was a little uncomfortable at times but it wasn’t so bad. I had mine for a month though 😣.

I was super scared about the catheter but it wasn’t nearly as bad as I imagined. ( the stents I had however 😣 were not at all fun). Two weeks seems like a long time but it will go past quickly.

They will probably put the catheter in during surgery so you won’t feel it and taking it out is fine. I would recommend drinking lots to help prevent infection. I found warm herbal tea helped me. Like I said I had mine for a month and I was lucky I had no issues with infection. So drink lots :)

At night you attach a larger bag and I would check that the catheter is draining properly before you sleep as I had one that didn’t and it can be painful if you don’t notice and the bag doesn’t drain properly.

Also also found it more comfortable to put the tube up through the top of the waist band of my knickers rather than through the leg as it keeps the tube more stable. I hope it all goes well and you heal up fast :) xxx

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Thank you so much for your reply. It’s really comforting hearing ‘positive’ (relatively speaking) outcomes from this. Yes it’s a lap to deal with a lot of the endo and then targeting the bladder that’s growing on it. My consultant was unable to ascertain whether it would be a straightforward shaving of the bladder walls or needing to cut the disease out. I just completely freaked out because my bladder is so painful/ causes me so much misery because of my interstitial cystits that the thought of my endo surgeon going anywhere near it fills me with absolute dread as it will inevitably make the IC worse.

I’ve decided to push this surgery back for some months as I have a bone tumour in my pelvis that I need surgery to remove and my little brain can only face one horrible surgery at a time. This issue is causing me the most pain at the moment and so I want to address it first. Also not sure I’m in the right place mentally to deal with a bladder surgery as it was causing me so much stress.

I’m very grateful for your reply though :) something to read when I do eventually have the surgery! Xx

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Oh wow that sounds pretty scary. I can totally understand why you don’t feel up to this at the minute. I think the scary thing is not knowing what they will have to do I.e shave or full restriction.

Even though I had to have a full restriction it had healed super well. I was experiencing lots of bladder pain before. Sometimes it would hurt so much to pee I would be scared to go, so some of your symptoms that you think are IC might be the endo. The good news is 6 weeks post op and I have no pain at all. I even had my first period and it was totally normal.

Best of luck with everything and I hope you start to feel better soon xxx

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Wow what a good recovery! I really hope it continues to get better and easier for you :) xxx

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