Endometriosis compressing kidney pipe

[K2023]

Hi,I am an old veteran to Endometriosis, 30 years now since I was first diagnosed  and I have just had 4th Laparoscopy.The diagnosis was a mass that is compressing the kidney pipe causing swelling in the kidney.I also have big mass adhesions that have stuck the large colon to the pelvic brim ,on top of that some nodules and cysts on the ovary,the description was distorted anatomy .I have never felt so confused or in the dark about it before like this.It  has been a long year of pain .Specifically left sided ,the pain is in my groin ,abdomen , under rib and the left side of my back near coccyx.Burning pain and constant peeing, the peeing seems to have settled since the op .Has Anyone experienced this kidney compression with endometriosis? They said I had no active endometriosis but it makes no sense as I have not gone through menopause yet or had any hormonal treatment. I don’t understand how so much damage can be caused since my last Laparoscopy 5 years ago.I am waiting for another operation to which they will have a multidisciplinary team in and that’s as much as I know .The consultant is such hard work to discuss anything with .I initially sold my soul to go through Bupa so that I could find an Endometriosis specialist as I was under the NHS urologist and he said after 7 months I need a Gynaecologist.This is what pushed me to find someone who knew more about Endometriosis,but I feel like he’s changed diagnosis so many times, first I had deep infiltrated endo and needed a full Hysterectomy,I was sent for MRI that showed nothing ,he then said it was sent to wrong department and seen by wrong specialist.I then had to have the Laparoscopy and he told me he thinks he knows what’s causing the pain ,but it may or may not be “ confused Yep  very “”so when I asked this must be having an affect and causing the pain he said I may never be out of pain as my nerves are probably the pain I’m feeling and then to top it ,he said people who loose legs can still feel the pain in their legs .sorry about the long rant it just all feels like it’s never ending and spinning in my head.

[Lindle]

The tube is the ureter and this is often affected with rectovaginal endo.

A red flag is them saying that you would need a hysterectomy for deep infiltrating endo as the only surgical treatment is advanced excision which may also involve a hysterectomy. Deep endo is mostly fibrosis which is diseased scar tissue (endo adhesions) and it can't be known if it is active or not, even with biopsies as histology often comes back negative.

You need the most expert of care. Have you now been referred to a tertiary specialist endo centre or do you get the impression that this surgeon intends getting a multidisciplinary team in? You're not allowed to name surgeons on him but perhaps you could DM me his name to check whether he has any specialism in endo.

[K2023 in reply to Lindle]

Hi Lindle ,thank you so much for you’re reply.I’m new to forums how do I DM ?

[Lindle in reply to K2023]

Click on my profile picture and you will be able to message from there. X

[EmaW]

So sorry to hear about what you're going through.

I'm not sure I can offer much help but I have the same issue.

I requested a check up of my endometriosis after the birth of my son...2 years on and I've now been told that I have completely lost the use of my left Kidney & Ureta due to endometriosis compressing the Ureta.

Luckily I have had no pain or complications caused by it...I say luckily, maybe if I had had symptoms I would still have 2 kidneys...?

I am awaiting a laparoscopy to treat the endo and remove the kidney and ureta. I am under the care of an endometriosis specialist centre and will be treated by a multi-disciplined team due to my kidney and bowel being involved and have recently spoken to both my usual consultant gynae and another of his team...I think fertility specialist?

Did they identify the mass as endometriosis and did they remove it to relieve the kidney in your first op? Not to worry you, but once they found out my kidney function was abnormal they made it pretty clear that I needed urgent treatment before I lost full function of the kidney...unfortunately for me by that time it was already too late.

One thing I will say after seeing many different doctors and gynaes over the years, it makes a hell of a difference if you are confident in your doctor and have a good relationship. If he works in a team is there anyone else you could request to speak to about your case for extra clarity?

[K2023 in reply to EmaW]

Thank you for you’re reply. I am so sorry you lost you’re kidney I was so shocked to read how much you have already gone through and still going through . I had the same symptoms 5 years ago swollen kidneys were detected ,after the laparoscopy I felt like I just had milder symptoms enough to function but not gone .In September they were back and at its worst .I went to GP he felt something and referred me to oncology gynaecologist and Urology ,once they gave the negative I was on normal waiting times so 7 months after initial GP appointment the Urologist found my kidney and pipe was swollen possibly down to Endo and referred me back to Gynaecologist I went to Bupa and to be honest he is the most difficult consultant I have ever dealt with , vague answers hardly listens and so conflicting with his diagnosis. He done the Laparoscopy to diagnose the problem with the kidney but found a nodule that he has stated several times “not entirely sure “ how can he say that , “possibly endometriotic “. It wakes me up during the night in panick. He couldn’t go near it in the operation because it’s to close to Ureter and there was a mass of old endometriosis too . He had to do ureterylosis to get a view of left kidney & pipe .I had a kidney function test done and it was normal ,I also have mass bowel adhesions glued to pelvic brim ,but he kept saying if you’re kidney is compressed you will be priority,I’m back on NHS waiting list for the multidisciplinary team 6 months list .Did they ever give you an idea of how long you had Endometriosis compressing the kidney ?Sorry for the long message it is so nice to talk to people who understand what you’re talking about .