Does anybody else have endo on uretha? I had this diagnosed last year and I'm now having problems with my kidney function and also have blood and protein in my urine!
Does anybody have experience of this? Oh and with hideous back pain that increases throughout the month?
Not on urethra but at the back of bladder, with blood and protein in urine, mobility issues due to the worsening of symptoms through walking, abdominal and kidney pain, nausea, fatigue, pain when needing to pee, difficulty peeing, pain/discomfort up to an hour after peeing.
I haven't been diagnosed but have blood in my urine and sore right side and painful urination at times. Often prolonged pain after urination especially around menstruation. Painful during intercourse. Right/left side pain at times during bowel movement and sometimes bloated during and after urination. Family history of Endo but just been advised to take brufen. I am fed up going to the Dr's now and have just been getting on with it.
I would advise you to change gp look at other surgery s local to you and see if they have any gyni gp 's who are more understanding! All you need to do is fill in a form it's that simple... Good luck. X
Hello there unfortunately I lost my kidney to exactly the same as you it's not nice I know I suffered pain for a long time and got fobbed off with ibs!! I still have blood and protein in my urine although I have now had hysterectomy aswell, I am back under gyne waiting for my 5th operation In 4 yrs to remove more of the damd stuff. Have you had a dmsa scan to check your function? Xx
No I haven't what is it? X
It's a kidney function scan they put a radioactive dye into you leave you for a while and then you go under what is like a ct scanner and it shows the function if your kidney, you lay 1 side for 20mins then the same other side. After I had this they decided to remove my kidney as I only had a 7% function. Xx
Both my ureters were apparently 'plastered' and had to be unstuck . My op was approx 10 weeks ago but I think my urinary symptoms have improved. Are you under a specialist who can deal with severe disease? If not it might be worth looking into getting a surgeon who could deal with it for you. X
I have it in my ureta. The tube from kidney to bladder. The urethra is from bladder to outside. My tube was blocked with endo. My kidney is now shriveled and only working at 17 percent AND I'm diabetic so I can't afford to have crap kidneys. As for the hideous back pain. YEP. I can sympathise with you on that one. It's disgusting. I live on pain killers. It's low down on the left side for me. My bowel is stuck to my womb. My left ovary is stuck behind my womb. I'm just waiting for a date for an emergency hysterectomy as pooing is now killing me as it's all stuck together. I will be 44 in October and I have 2 children so I don't want any more. I just want rid of it all !
I know what you are going through. I've got constant urine infections and blood and protein too.
Msg back if you need too as we are both in the same crappy boat !
Karen xxx
Hi Karen
Thanks for that I too have problems with my bowel but my consultant sent me back to my gp as in his words (I don't think it's endo related) I said to him it categorically was and I was absolutely positive of this he had agreed to do another lap but I have no confidence in his ability to treat it so I'm going to push for an endo centre.. And I'm also prepared to have a hystectomy as I have 2 lovely but challenging girls and I'm 37 and need to get my life back for me and my family.
Good luck Sharon. X
Hi Ladies,
I feel really sorry for you all suffering this. I had another lap in January and ever since my lower back is really sore it really hard to drive, sit etc: for a long period of time. I also have lower right hand side pain which is annoying, intercourse isn't pleasant, protein in my urine most of the time. I really thought after the operation I would have felt better but I have developed more pain. Does anyone know what it could be or would it be the re-growth of endo? Lower back pain is not good especially when your job role consist of a long drive and when sitting at a desk most of the day and going up and down stairs.
I really do sympathise with you ladies and the pain we suffer is not pleasant and it tends to rule or everyday life. Really hope you all get some pain relief soon, so you can all enjoy the summer sun 
I had excision surgery 4 weeks ago and he found my uretas we're covered in endo. I had shocking back pain with it but no probs urinating. Yes do make sure you see an endo specialist! You can be referred to anyone through the choose and book service with your gp. Good luck x
I have the same problems mine getting worse each month and few times I had white cells in mine. But I am waiting to get diagnosed tho.
I have also had white cells. X
Heyy chick I had ureterolysis done during my laparoscopy my tube from my kidney to my bladder was squished symptoms settled down after the lap they have now come back 
Thank you for all the replies it's helped knowing I'm not alone and I'm going to push for endo centre as I have no faith in my current surgeon as when he did the lap he didn't touch it because he said it was to delicate area!
Good luck to you all and thanks again for replying. X
Hi Yazza - while nothing has been confirmed yet (waiting to have my lap and see the specialist again), I am sure I have endo on the urethra. I get terrible pains in my kidneys, which at first I thought was due to kidney stones, but also painful urination - especially when on and just after my period. So you're definitely not alone!
I also have it up the ureter to the right kidney, causes terrible pain in the kidney and up the right handside when the endo is raging. And around the back, like a dull ache. Thereis always blood in my pee and a very strong smell to it. Recently I have started getting pains in the left kidney too and am wondering if this could be it compensating for the right? I've not had dmsa though but now wondering if it could be a good idea too xx
Just to double check Yazza - do you mean on your ureter or urethra? I have had surgery on both ureters to remove endo. The left ureter was particularly bad and was constricted so much that my kidney was very dilated. I have checks (as described by someone else above) to now check my kidney function. It is quite rare to get endo on the urethra - though it does happen. However, I would suspect that ureter endo is more likely to cause kidney pain. The left ureter is for some reason often the most frequently effected in women though they don't know why.
Yes sorry I did mean ureter and my pain is mainly on the left although it has started to spread over a larger area! It amazes me that they are so blarza about it it's damaging an important part of your body but there seems to be no urgency! I think they need to bring gp's up to speed in all the problems it can cause! X
Definitely do not let them drag their feet on this one. I was extremely lucky not to lose my left kidney and had I not really pushed them my op, after diagnosis, would have been carried out at least 6 months later than it was - which I discovered may well have been too late. I had also been telling my consultants that I was concerned that I might have ureteral endo for approx 2 years before they gave me an MRI to check to see if it could be seen. I spotted the symptoms way before they did and I just kept getting told that it was rare and not worth worrying about. I found the attitude very frustrating at the time as I already had a Stage IV endo diagnosis from previous surgeries so it did not seem too far fetched to me that my endo was being very aggressive again. Be assertive.
Not on urethra but on left ureter. Only symptom so far seems to be pain. Only treatment seems to be surgery. Haven't had kidney function test but have had MRI with dye - not had results yet. I can really empathise with the back pain. xx
Sorry mine is also my ureter the only reason they found out about my kidney function was from a blood test! X
They have now run a second test to double check then they will take it from there. X
Let me know how you get on take care Sharon. X
Hi. I came out in hives three weeks after my last surgery in April (I have a history of chronic ideopathic urticaria so it's probably my body being overloaded by all the drugs) and I'm going to ask my GP to run some blood tests including liver function so I will get him to do kidney function as well. Do keep me posted on how you are too x
I will do my blood results should be back Thursday!
So I'll update then but if you tap in ureter endometriosis there is some good information on the net it is apparently quite rare and can be damaging kidneys for a long time before it's discovered!
I found my letter from the consultant which says there are 2 patches on my left ureter! X
thanks, yes I had a look on the site a while back. Maybe not so rare for stage 4 - looks like it can be anywhere by that stage :/
I was diagnosed with endo last week and told it was on my urethra and couldn't be removed.
I have suffered from bad urinary tract infections in the past (weeing blood within 1hour of symptoms starting) but I have only just twigged this could be linked now reading your post!
I also have always had lower back ache and simply put this done to having larger breasts! :-S
If I were you id ask for kidney function to be checked as it can affect them! Also it can be treated but would need a urologist and a exceptional gyni. X
Worst endo pain ever😩
Possible Endo - advice please
Mental health and Endo? 
Worsening symptoms, are these due to endo?
