Endometriosis UK

Endometriosis and Kidney Infections are ruling my life!!

4 years ago I began having kidney infections and after having 1 every other weeks for 12 months, constantly having antibiotics thrown my way, I was finally referred to see a urologist after having, flow tests, ultrasound scans, credit scans nothing being found to be the cause, I was put on 6month low dose antibiotics and antibiotics to take after sexual intercourse. These didn't work.

On regular visits to docs I explained, I was having difficulty and pain when passing water and opening my bowels. I was constantly feeling sick. Had lost 3 stone in 6months. Constant pain in left side of my abdomen, pelvis and back. I was given paracetomal, ibuprofen, gabapentin and tramadol to ease my chronic pain. Am also feeling so weak.

I was then referred for a second opinion with a top urologist at Cardiff university hospital. He decided due to the extent and prolonged infections, I should try a relatively new and trial treatment which involved, putting a catheter in daily and injecting antibiotics in to my bladder daily. This worked for a period of time, slowing down the amount I had but then the infections came back even worse than before.

I was referred to see a gynaecologist in 2011 as the urology team could not come up with any other cure for me. I hadn't had periods for 2yrs as had been put on ceracette pill due to all the antibiotics which had stopped my periods. But when I did have periods, they were extremely painful and heavy. After seeing the gynaecology consultant, he was 100% convinced I did NOT have endometriosis but just to rule it out offered me a laparoscopy.I had this done in Oct 2011 and doctors were extremely surprised to discover I did in fact have endo. I was told my rectal tube was stuck to my back wall. My left vary wad stuck to my pelvic wall, my womb, kidneys and bladder had also been affected. I was as confused and shocked as the docs as all the scans I had nothing showed up, I was constantly looked upon my docs as I was making up the pain to the point I started to believe it was in my head. I was put on to prostap hormone injections for 6 months and livial but after 3 doses I began to have an allergic reaction in form of a skin rash and also started to have periods as soon as I stopped the ceracette. The periods are lasting for about 12days and are so painful and draining. I got changed to a zodalex implant at the end of last month still having periods and also the kidney infections are still as bad too. So don't think that is working either. I am not supposed to be seeing my consultant until April but seriously think I should be seeing him sooner.

Sorry for such a long story.

Hope I can have some light shed on this sometime soon.

2 Replies

hi honey you need to go back to your gp and ask for referral to an endo specialist from what you have said it sounds like you will also need the input of urology and a colorectal surgeon are you on facebook? if you are you should be able to find me i'm fiercefat andfashionable i'll help all I can huge hugs


Thank you very much for your reply. How long have you had endo for? I am under gynae but can't see them until April/may which is 7months after my op. I was under urology, but now been discharged as they say they can no longer do anything for me. My GP is useless just hands me antibiotics for all the infections I get, repeats my painkillers and that is it. What is the name need to search on Facebook to find you?


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