Endo blocking ureter

Hi. I have a stent in my left ureter since August and am in more pain with it then the endo. I can barely sit down. Has anyone got any suggestions as too what may help. I have prescribed 5 lots of antibiotics for possible uti but not helped. A bgse won't operate I'm supposed to have stent changed in January but am seriously considering not having another one as I can't take this pain or being unable to sit down. It's like having gained coat hanger up my urethra to my bladder. Also peeing raspberry juice again. Paracetamol doesn't touch it and I can't take most meds as side effects get me. Taking cranberry tabs. Thanks

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  • Sounds awful. Does your surgeon know you have blood in your urine?

  • Yes. They tested it,

  • Huge hugs x x x I really don't know what to say other than I really wouldnt be able to cope with those symptoms and would probably be at A and E by now. Of all my symptoms is was my bladder pain that drove me to get diagnosed.

    I have the same issue with painkiller side effects. Could it be endo rather than a infection or general inflammation or irritation like IC?

    No idea if it will help as my bladder endo is minor and I don't bleed wth it but I tend to use anti histamines ( piriton 4 hourlies not daily) to tone down my bladder interstitial cystitis when it flares up. I've also been trying manuka honey as it's supposed to be a natural anti biotic.

    ichelp.org/about-ic/associa...

  • Trying to get answers is like trying to get blood out of a stone. I'm waiting for yet another referral to get the stent done so I'm going to get answers then.n they told me previously I was describing typical stent symptoms. X

  • I also had endometriosis effecting the ureter. I had stent for three months then had the major operation to excise all endometriosis lesions and had stent changed and left in for 1 more month. Now it was removed and I had the all clear.

    What do they say regarding your future treatment? Why can't they treat it by excision? If not you can have reimplantation of the ureter by an urologist instead. My lead consultant had the urologist on standby for this during my operation. Luckily I didn't need it. Don't think have a stent for the long term is a very nice option. I had stents for 4 months. It is ok in the beginning but did become quite uncomfortable towards the end. I think the stent is worse than the endometriosis pain too. Can't say any painkillers really helps other than resting.

    You really need a consultation with the lead surgeon and plan the next step. Best of luck.

  • Bgse won't operate as very very complex and very very high risk to bowel. I have to have injections for 6months.v that's Al I know.

  • I've already had 1/3 of my bowel removed and left with a colostomy. It sucks. I don't want to live with that and stents for the rest of my life! I would seek a second opinion if you can xx

  • Thanks. It doesn't make sense to ma'am they ve been saying all along il need surgery in November they called and asked if I old come in the next day as they had a cancellation. Then I'm told less then a week before the surgery it's too complex and risky. I suspect money and politics are involved as op was due 20th December and now all none emergency osps ar been cancelled adbedsleared fr Xmas. X

  • Well I know that the time of year doesn't help and all non urgent ops can get cancelled if a hospital is put on high alert. As much as we shouldn't be negative or sceptical. IMO there's no reason they can't excise your endo so just keep chasing, that is key!! I have spent the last year calling my local hospital, day in day out and its the only way to speed things up, they just want you off their backs in the end! Good luck! xx

  • I also had a stent placed in my left ureter in August. So far I've not suffered too badly, mild stinging when i pee and the feeling that i still need to go when i don't, bit like cystitis. I've had chronic thrush ever since but not sure if that's related. I've been told that the stent cannot be permanently removed until the endo blocking it is excised so waiting for an appointment to have it changed in Jan. I also have my first appointment at a Bgse in Jan, fingers crossed they can remove my endo! xx

  • Thanks and good luck x

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