Endometriosis spread to the kidney & ureter, nephrostomy fitted and more major surgery ahead… any advice or similar experience?

[Greys90]

Since my last post I have been in and out of hospital ☹️ I had lots of blood in the urine and severe pain in my back and side. After tests and scans they found my left kidney wasn’t functioning and the ureter was blocked all down to growth of endometriosis. The surgeon confirmed in my previous surgery (excision of ruptured ovarian endometriomas) they had seen growths wrapped around the ureter.

Link to my last post 5 months ago… healthunlocked.com/endometr...

In the last two weeks I have had a nephrostomy fitted which is a tube through the skin into my kidney that helps to drain fluid into an external catheter bag and have started decapeptyl injections to induce menopause and downgrade hormones whilst I wait for major surgery.

I need another bowel resection and will have a temporary stoma, some vagina needs to be removed as disease has come through the wall, along with a hysterectomy and removal of one ovary.

The surgeons are deciding whether to disconnect and reimplant the damaged ureter higher up into my bladder or to remove the kidney. They say there is “not much meat left” on the kidney so will more than likely take the kidney out.

All of the procedures will be done together in one surgery over a full day. I am in the decapeptyl injections for 3 months and the surgery will be booked at the end of the 3 months.

There is also query of endometriosis in the lungs/diaphragm which is to be investigated.

Has anyone experienced this and have any knowledge or advice as not much information online when trying to research?

I am 31 and live with my brilliant and supportive fiancé, we have no children.

I am reaching out to anyone experiencing similar, awaiting surgery or living with a nephrostomy or has endo in the kidneys/ureter.

It would be helpful to know if after all of this upcoming surgery I knew I would no longer be in pain and dealing with the daily struggles of endometriosis.

I am in survival mode and myself and those around me are so surprised that this disease can cause such serious damage to even more of my organs.

[Moon_maiden]

So sorry you’re going through so much, with a huge operation ahead. I know at hysterectomy my ureters were covered, but nothing was mentioned about bladder or bowel, let alone kidneys, hence why I went elsewhere. I suspect Endo is higher but until next op I’ve no idea if pain is residual or other organs involved. I know activity makes my abdomen worse and I get pain in my back around kidney area. There has been blood tested in bowel and bladder.

I’m not much help, more to say I wanted you to know that here for a bit of support.

It sounds like you have excellent surgeons on your case and that’s a huge part of it being successful 🙂

I know about survival mode and trying to maintain it.

[Jmiller623]

Sounds like you’re having a go of it. Just sending hugs and support. I don’t have experience with ureter issues but ureter was coursing right through endometriosis I was told. I have kidney dysfunction. GFR stays around 60 which is low. We never knew what was causing this so now I have some more digging to do if my renal function improves after surgery.

Just make sure you’re confident in your surgeon. Ureter surgery and reconnection is not easy but removing a kidney is.

[Ronsk]

Hi there, sorry to hear what your going through, I had a different surgery 10 years ago to remove my adrenal gland, it was all meant to be done through keyhole surgery. I was informed after that they had to perform open surgery due to them finding it very "sticky" inside and it caused them great difficulty removing the gland . It was explained that my endo was up as far as my kidney. You mention ruptured ovarian endometrioma? Can I ask what symptoms you had ? I'm concerned as I'm having issues with pain in my left hip /pelvis which goes through to my back I'm suffering a lot with the pain which seems to be coming from the hip and has been ongoing for 2 months now. I've not yet mentioned it to my Dr. it could be referred pain from my ovary as I've several cysts on each.