Preparing myself for a full hysterectomy,... - Endometriosis UK

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Preparing myself for a full hysterectomy, bowel resection and stents in bladder......

NMPW profile image
NMPW
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Has anyone been through this or similar? I'm desperate for support and I'm terrified about this operation. I have been given a 50% chance of a better quality of life. It's a lot to go through for those stats.....

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NMPW
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Endolemon profile image
Endolemon

hello 🌻I am on waiting list for the same operation. I am scared to death as well 😊

I hope that I will feel better after because bowel pain was unbearable 😵‍💫And I am fatigued 24/7.

I feel better now after Prostap injections but how long it will last 🤷‍♀️ Also I read it can turn into cancer in some cases. There will be 3 surgeons during an operation: Gyne, colorectal and urologist. Stents will be removed after (don’t know how soon).

I have had 5 counselling sessions but I would say this forum stories helped me much more 😊

How long is your waiting time? I have been told 6 months.

TashaBarry profile image
TashaBarry

Hey, I’ve recently had my laparoscopy where they also re sectioned my bowels and re sectioned my ureter to the bladder. I had a stent put in my left ureter 9 months ago from endo tissue blockage that kept my kidney from draining. This saved my kidney from complete failure but it was tough and quite painful, it can give a lot of back pain but can be managed day to day with rest. It’s hardest to keep sane and not let it get you down! I waited 5 weeks after op to have the stent removed which flew by and now I’m stent free. I had a catheter in for 3 weeks after op and it was quite difficult having this in, it was uncomfortable at times and heavy to lug around on your leg! When they took it out after 2 weeks my bladder clearly wasn’t ready and I couldn’t pass urine naturally so I was in a lot of pain (from the stents as this causes flack pain if your bladder is full). So I had it put back in for a week and then removed when I could pass urine okay. I’m still having to self catheterise occasionally and not going to lie I’ve been fighting a UTI since the op which hasn’t helped getting my weeing back to normal as this increases the chance of infections. As for the bowels they gave me an ileostomy bag so that the lower bowels can heal from the resection, they said this should be about 3 months minimum. It was a lot to wake up to this because I was told these were all worse case scenarios but on reflection going through this temporarily is going to have such long term positive effects. I have my follow up today to see how the bowel is healing and when can it be reversed. Honestly the ileostomy was hard to adjust to and learn how to deal with at first but after a couple weeks it becomes second nature and it means you can eat all the starch and salt you want. Also the support for stomas is really efficient will local services and suppliers. (Not so much with catheter care unfortunately). I hope you won’t suffer for long after your op and everything goes well. I was told my pain would reduce by about 80% after all this is done so hopefully it will be the same for you! I really hope this doesn’t scare you but makes you feel a bit more prepared for what’s to come, honestly it’s all manageable and we’re all so strong from having endo in the first place! I hope you don’t have to wait too long because I know how the waitlists can be! x

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