Bladder surgery

[Dkb29]

I have to have surgery to remove a large amount of endo from my bladder they have to obviously give worse case scenario but they have said they could damage my womb or my bladder they have said I will have to have a bag attached to me for 14 days after the op to empty my bladder and it will need retraining as it’s used to having a large mass there my concern is that I will have to wear a bag to help me wee for the rest of my life has anyone experienced bladder surgery before as I am super nervous

[vmagpie]

Hi,

I haven’t experienced any of this so no help at all..but just wanted to say I’m sorry you’re experiencing this and hope all goes well with your surgery and recovery x

[hanybobany]

Hi there, this sounds pretty normal to me. I have stage 4 endo on uterus, bladder and bowel and they said the same thing to me. I have opted to wait and not have surgery until after I’ve had children (if I can have children). They have to give you worst case which usually sounds pretty extreme. Have you decided to have the surgery yourself or have they told you that you have too? Make sure the decision is the right one for you and then you can weigh up the pros and cons of going ahead with it. I’m sure the surgery will go smoothly and they will always try to be as uninvasive as possible I’m sure. Good luck and I hope my advice helps a little bit x

[Johans11]

Hey Dkb29,

I had similar surgery at the beginning of the year. I had Endometriosis that had grown full thickness through the bladder wall. Despite various hormone treatments it kept growing slowly and at one stage it was so painful during my period that I could hardly pee. I was told the same as you in regards to the risks. When ever they do abdominal surgery there is a risk of damaging the surrounding organs such as the womb but this risk is very low. I was also worried about having the catheter afterwards but it’s not too bad and doesn’t hurt at all when they remove it. I had to have mine for four weeks after. You just need to make sure you are drinking plenty of fluids and the catheter gives your bladder a rest and time to heal. Since healing and having all the various tubes removed I have had zero issues with my bladder, I feel better than ever. My consultant also told me he has never seen bladder Endometriosis come back after surgical removal. I think you have to way up the pros and cons but if this is really effecting your life then surgery is a great option. The worry I had was that the mass would continue to grow and the longer I left it the larger the section of bladder might need to be removed, or it would block one of the tubes to my kidneys. I don’t know where you are based but had a fantastic surgeon in Edinburgh if you want the details. Any questions feel free to message me, best of luck xxx

[1Tia1A]

Oh yes! I had bladder surgery due to endometriosis. After surgery, I had to wear a catheter with a bag attached to catch my urine. All of this is done sometime during the surgery. A catheterrible is inserted into the urethra and into the badder. It is inflated a bit to keep the tube from coming out. A plastic bag that can be emptied is attached to the other end. It is held in place by a leg strap. This is done to allow the bladder to heal after surgery as the pressure of urinating naturally may cause stress on the bladder. With this device, your urine simply drains into the bag. You wont even feel it. Once you have healed from the surgery, the catheter is simply pulled out. There really isn't much to it. You dont have to change your routines but, you will have some limitations after surgery. ...no lifting, pulling etc. Actually, it's more of a nuisance than anything. The main thing is taking your time to clean the catheter properly to avoid a UTI. The doctor will show you how to do that... You will do just fine my sister! There really isn't anything to it! Sending hugs to you from across the miles! XOXO

[Baba11 in reply to 1Tia1A]

Hi I read your post and I hope you don’t mind me dropping on. I have been told I need surgery to remove the endometriosis from my bladder and ureter would I need a bag for that also? How long was you in hospital for? Xx

[1Tia1A in reply to Baba11]

Hey Baba11!😊

In my particular case, I was in the hospital for about eight days. My endometriosis was on the bladder but, I also had an unrelated growth that woyld have developed into cancer. I'm pretty sure that your hospital stay is determined by your case. The ladies I know that had bladder surgery were in the hospital for three days at the most. You could always call your physician and get a better idea.

More than likely, you will need a catheter because you are still having surgery on the Urinary System. The bladder must be allowed to rest and heal after the surgery. The bladder muscles must contract to pass urine. So, I am inclined to say that you will wear the bag for about two weeks after the surgery. It takes about that on for it to heal.

It's really not as bad as it sounds. You may have all kinds of thoughts running through your mind at this point but, please do not over think about this. Overthinking will always blow things out of proportion and stress you out. You can still wear underware. 😉 I think that was my biggest concern at the time. 😀 Please don't worry, you will be just fine. xoxo

[Baba11]

Hi 1tia1a

Did you have a lap before hand to diagnose ? I had the lap back in September and was told more surgery needed but I was being referred to a specialist that deals with endo. I was just wondering. How long it took for you to have the actual surgery ? I have had to ring the specialist a few times as the receptionist had messed up with sending my paper work over so I’m in limbo iv been told by a consultant I need surgery on bladder and uretha but I actually don’t know what is happening I’m still waiting for a appointment to even see the specialist team and it’s been 12 weeks I don’t have any faith in the system as iv suffered a fair few years with everything and after the lap I thought I was finally getting somewhere to have it all just messed up and felt like iv been fobbed off and have to start from scratch again just to be seen and taken seriously x