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Retroperitoneal Fibrosis

A MyEndometriosisTeam Member asked a question 💭
Pittsburgh, PA

So upon my recent laparoscopy, they did find that my left ureter was obstructed from retroperitoneal fibrosis (scar tissue caused by endometriosis) I am just wondering if anyone else has experienced this and if you could tell me your story and symptoms.

October 24, 2023
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A MyEndometriosisTeam Member

The androgenic side effects of Danazol and other testosterone based treatment sound really awful too.

October 29, 2023
A MyEndometriosisTeam Member

You know testosterone can be used as well. They don’t usually bring that up as one of the options but it does help to correct the estrogen dominance.

October 28, 2023
A MyEndometriosisTeam Member

It was the investigation of the hydrophrenosis of my left kidney that led to my endometriosis diagnosis. My symptom was that over the course of a couple of months my blood pressure skyrocketed and then largely self corrected. I don’t have typical endometriosis symptoms though my low back pain that was thought to be caused by an old injury to the same area, is pain due to the endometriosis mass on my utero sacral ligament. I had a JJ stent put in to protect what is left of my kidney function while the treatment plan is developed and carried out for the endometriosis. The JJ stent is only good for a few months before it has to be replaced. Hopefully we won’t have to swap it too many times before there is a longer term solution. Right now my doctor wants to try a medical treatment (Lupron + add-on) to see if the tissue will regress. Depending on outcome, we’ll see if surgical intervention is required. I just got the presecription for Lupron a few days ago and we didn’t fully discuss the risks associated with it. I’m considering asking for an alternate treatment as I’m not at ease with the possible side effects.

October 28, 2023

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