Hi everyone. I posted some time ago looking for people's experiences of having a total hysterectomy with tubes and ovaries removed. Thanks for the responses. I'm still waiting for my date but looking forward to surgery. I have also just had some news from an ultrasound scan that there appears to be a blockage in my right ureter and kidney. I expected it to be honest, as I have had increasing pains down the right hand side of my back over the last year and had an abnormal renal function blood test as part of my routine over 40s health check.
Just wanted to check, has anyone else had blocked or damaged ureters or kidneys with their endo? And if so, what sorts of options have you had? I am waiting to have an MRI scan and further discussions with my very good consultant, but not quite sure what to expect. Maybe stents put in the ureter when they go in to do the hysterectomy? Or would they actually consider removing a kidney if damaged? Always so many questions with this disease!
Value hearing from anyone whose gone through something similar.
Many thanks Lindle, appreciate your views. I'm actually still with my 'regular' consultant who first diagnosed me and carried out my major surgery about 9 years ago (bowel resection and as much excision as was possible). Unfortunately, much of mine is too risky to remove so I am well aware of the potential risks of continuing problems post hysterectomy, but it's the best of a bad bunch of options for me. I've looked into transferring to a specialist centre but prefer to have continuity of care at this stage. And my consultant is a specialist in surgery for female cancers and endometriosis so I trust him and his skills and approach. I'm assuming my kidney results will need to be discussed with a urologist before my consultant decides the best course of action. But I can't find too much on the internet about this aspect of endo. Appreciate your comments about regular oestradiol tests post surgery. Whether or not to take HRT is one of my biggest dilemmas at the moment, as I know they will not be able to remove all of my disease safely so balancing the pros and cons of HRT is making my mind boggle! Very interesting what you say about the blood pressure. I had raised blood pressure a few years ago out of the blue. I didn't want to take tablets so instead opted for losing some weight and increasing my excercise etc. Seems to be under control now, but wonder if that was all linked. Intriguing
Ooh thanks for that. I hadn't realised that was the case. I will see if I can find out. Many thanks
Hello. I am awaiting a review in a BSGE centre. I have been told my endo is extensive. I didn't know I had it until I had a UTI last October. My left ureter was completely blocked by endo and has damaged my kidney irreversibly. I have been given options by my urologist at my local hospital to leave it alone or reinsert a ureteral stent (which I had for 14weeks and was removed 3 weeks ago). I am not sure what to do so will wait to be reviewed. I am shocked that things were so bad with no symptoms and worry the same will happen on the right side😔
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I'm so sorry to hear your news, but it's good they have found it and are looking into what can be done. Fingers crossed there is a positive option for you. If you don't mind keeping me posted I would be really interested to hear what they suggest when you go for your review. With the stent they put in, was there a reason it was just a temporary measure? You say it was removed after 14 weeks? Also, have they given you any advice on how best to keep your other kidney healthy and functioning well? I know people can live perfectly normal lives with one kidney but assume there must be some advice on lifestyle etc.
Sorry again you've had such a shock, and thanks for responding. I've lived with endo probably nearly 20 years now although only diagnosed 9 years ago with severe and complex disease. It never ceases to amaze and frustrate me what it can do!
Take care and good luck at your review x
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Hi again!! My left kidney function is very poor, only 9% in January then had lap and ureteral stent put in in February. They took the stent out to repeat the kidney function and it's only 14% so no real improvement. I was only ever symptomatic of the endo in that area so have been told by General urologist that if going to take endo out from ureter probably take kidney too. That's why I want review in specialist centre. Have had bloods to check kidney function too and right side is working well. I will be asking what if any observation of the right kidney will be done.
Only referred last week so not sure how long I'll have to wait just yet. I will of course keep you updated on my progress.
Hi Liverbird, I'm not exactly in your situation, but my right ovary is attached to my right ureter with scar tissue from endo. The doctor who did my surgery didn't think the ureter was blocked, and didn't attempt to separate them during my (laproscopic) surgery b/c she felt that the chance of damaging the ureter through the surgery was more risky than leaving them attached. I have no kidney related symptoms as far as I know--no back pain and have consistently had low blood pressure (thanks Lindle for mentioning this as a symptom, I didn't realize this connection but have always had low blood pressure including recently).
Do any of you think I should pursue further treatment for the attached ovary and ureter when I'm not having symptoms, and if so, what?
I wish I had specific answers for you but I don't, but want to say that yes, you're not alone in having kidney/ureter related endo problems. Best of luck with your surgery.
Many thanks CP17. I appreciate your comments. I don't really know what your best doing next, but presumably if you are still an outpatient you can go back to at least have another conversation with them if you are still worried, even if you don't have any particular symptoms. But be glad you don't have any pain or other symptoms at least! Silver linings and all that! All the best x
Hi Liverbird, thanks for replying. Based on what you and Lindle have said I feel reassured that it's probably not urgent since I don't have any kidney related symptoms as far as I can tell, but the next time I'm seeing my OB/GYN I'll double check that there isn't anything else necessary to make sure my kidney is functioning well.
I have endo effecting my ureter and kidney. You would have MAG3 scan for kidney function. MRI scan for endo lesions. I had diagnostic laparoscopy for endo, endoscopy of the ureter, and a stent was inserted all in one operation. I was also given prostap 3 injection, and booked the main operation to remove all endo lesions in 3 months time. I feel the process has been pretty smooth and swift. Good care was provided at the specialist centre.
No problems. Hope you treatment goes well. Take care x
Hi and thanks, I always find your posts so informative!! It's interesting the left ureter is the most commonly affected coz I did ask the gynae but they just said its one of those things! I haven't had my blood pressure regularly monitored but will probably take your advice to check it. I work in a hospital so can probably get it checked there.
I find the fact they still know so little about endo so shocking considering the amount of women affected and the damage that can be done. 😔
Hi, I had surgery on my left ureter 9 months ago - I was told that the most experienced surgeons with regard to ureteral Endo (as it's quite rare- only 3or4% of people with endo) were based in Specialist centres at either Liverpool or Cornwall and was referred by my consultant to one of them. My surgery was 9 hours long and the recovery period has been lengthy - I had 3 months off work and then only returned on a phased return. I had a nodule that was blocking my ureter and in order to excise this they had to Cut my ureter in half and then rejoin my ureter. I had a stent fitted for 6 weeks. I had an MRI scan, an ultrasound and a MAG scan of my kidneys beforehand. My kidney and ureter were both dilated previous to my op and my blood pressure was high. my left kidney was only working a third and the right was compensating by doing two thirds of the work. I was in hospital for 9 days following my op, I had a catheter in for a week and unfortunately developed a kidney infection (due to catheter) so was treated on IV antibiotics. I had the stent removed under general anaesthetic 6 weeks later. Luckily it had healed well and I didn't need another stent fitted. I then had an ultrasound of my kidneys 6 months post op and my kidney has returned to a normal size. I would strongly recommend an experienced team where a urologist and gynaecologist work together often. I previously had an op at my local hospital and they had to stop my operation after 5 hours as they accidentally went into my bowel and the urologist did not have the expertise to do what was needed on my ureter. If you have any other questions feel free to message me. I hope that helps. I found the surgeons to be brilliant and really rated my experience of the team. The consultant even came in on his day off to check on me and I was visited by both the urologist and gynaecologist for days after my op.
Thank you I really appreciate this. It gives me some more questions to ask my consultant. Do you mind saying which centre you went to? I actually live in Liverpool so had been toying with the idea of transferring my care to the centre here, but I've been with my other consultant for 9 years now and trust him, and he has done a number of big ops on me with his colleagues, which is why I thought consistency might be the best option for my hysterectomy. But that was before this latest news about the spread to my ureter.
Glad you are on the mend. I don't yet know the extent of the endo on my ureter but you have given me some very useful info to help with my next appointment. Really appreciate that. Hope your recovery continues well. Wish you all the very best xx
Hi Lindle, thanks for your reply. I live in the US so the treatment pathway is different (but I'm on this site anyway b/c I find it so helpful and supportive). Also, I live in a rural area and I don't know of anything in my state that corresponds to what you folks call a "specialist centre" that specializes in endo. However, I have had great experiences with my OB/GYN who did my surgery, and trust that if she says my ureter isn't blocked that's probably correct.
I think it is very important to be referred to the appropriate specialist centre where they can provide surgeons as a team, these centres where set up for a reason and general gyne shouldn't be dealing with complex cases, x
Hi I am awaiting surgery I have stage 4 endo and it has engulfed my lower body I am waiting to have a full hysterectomy 2 kidney stents and a bowel resection and a hernia done all at once I have half a kidney that is working my right one is completely blocked and a part blocked left one I hope you are ok and here if you wish to chat xx
Sorry for delay in responding, I've been away in Wales with no signal this week. Thanks for getting in touch but so sorry to hear your news. I still get amazed by how much this disease can ravage our bodies. I sincerely hope your surgery is successful and brings you some relief. So can they save your kidney and improve its function using the stents? I am still waiting for another MRI scan to find out the extent of the damage to my right kidney and find out my consultants plans. I had a bowel resection about 9 years ago and it was a great success for me, relieving me of my worst symptoms. So I wish you well. Do you have z date for your surgery yet?
Hi Liverbird75, I'm glad I've found your post - I'm new to this forum as well. I was recently diagnosed with endometriosis this January after years of horrendous periods, which I assumed were normal!
I have 'kissing ovaries' which have cysts on them. The cysts are around 21cm in size. So you can imagine how much pain I'm in. They've also attached to my rectum and my ureter on the left hand side is being crushed. I have my surgery March 12th.
I have a renogram on Friday, which I could see the scans on the screen next to me. My right kidney was completely lit up, as was my bladder, but my left kidney was non-existent.
How soon did you receive your renogram results, if you don't mind me asking?
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Ureter Stent
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