Where to start…..?!

[BaconBaps]

Firstly, hello - this is my first post! I’m 45 and was diagnosed with endo about 15 years ago. I used to be a member here when I was first diagnose and I found it a huge support.

Since then, I’ve had four laparoscopies to remove large endometriomas and extensive endo from all over pelvic region. Also had a course of Zoladex (which was ineffective) and tried many, many different types of the contraceptive pill but none have really helped in any way other than to regulate my heavy and painful periods.

I pretty much got to the stage where I had learned to live with the nuisance that is endo, but recently I’ve been getting severe pain throughout the month, not just with my period. In fact, my period hasn’t even arrived yet this month – I’m currently 5 weeks into my cycle. Obviously I’m conscious of my age and that it could be the onset of menopause, although I have no other menopausal symptoms (I’ve been through the pseudo menopause with Zoladex so I think I would recognise it, although any advice or info is welcome!).

I went to see my GP last week and she was actually very thorough and attentive, compared to some I’ve seen in the past. She took a urine sample and rang me the next day to say it showed white cells which indicate an infection, so I’ve just finished a course of antibiotics.

My main concern (in this very long-winded introduction!) is that I have never suffered with a urine infection before and the only time one has ever been suspected was immediately before my second laparoscopy when they took a urine sample in my pre-op. At that time, I panicked because I thought maybe I’d made all that fuss over a simple infection! But as it turned out, the surgery showed that my ureter was totally encased by endo and virtually blocked, meaning that my kidney was on the verge of failing.

So, to get to the point, I’m now wondering, given that I have absolutely no symptoms of a urine infection at the moment, if this latest abnormal urine test could be an indication that endo is affecting my ureter again. Has anyone else got experience of this? I have to do another sample on Monday and it will be interesting to see if it’s clear. If not, do you think I should suggest other investigation or just take more antibiotics, which I’m guessing the doctor will give me.

I would love to hear from anyone who has had similar symptoms or experience – or anyone generally as we’re all in this together! By way of further introduction, I’ve also done two rounds of ICSI which were sadly both unsuccessful. My lifelong ambition was always to have a family so obviously I’m devastated, but over the past few years I have learned to accept what I have and I still count myself lucky.

BB xxx

[Stellauk]

I have also endo effecting the ureter and kidney. However my urine culture was clear. They pick it up on a CT scan. I believe urine culture often produce false positives. Maybe a ultra sound to check the size of the kidney/ ureter would be a better check?

Were you followed up after the operation removing endo? I only had the operation 10 days ago. I got two stents and a catheter to come home with 🤕. However, they will do a MAG3 scan later to check. Not sure regarding long term follow up routine?

All the best

[BaconBaps in reply to Stellauk]

Hi and thanks for responding. I've had four different surgeries and been under the same department of consultants since diagnosis. The op where my ureter had to be cleared was ten years ago and since then I haven't had specific problems with my kidney. The other surgeries have removed large endometriomas and endo from my ovaries, peritoneum, womb, pouch of Douglas, top of vagina, and also removal of lots of adhesions - my bowel, ovaries and womb were stuck together last time. That was two years ago and I haven't seen my consultant since but actually I got a referral letter tonight when I got home! I think I will ask for an ultrasound as you suggested.

Good luck with your recovery and I really hope the surgery has been successful for you.

Thanks again. xx

[BaconBaps]

Thanks for your reply and the info. My last three surgeries have been done at the JR women's centre in Oxford. I think it's accredited although when I first went there I'm not sure that system was in place.