Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Endometriosis on the kidney

by Evelyn Grobler
(Johannesburg South Africa)

Endometriosis symptoms that I have suffered -

I had extremely painful periods with back and groin symptoms that gradually disappeared when I stopped taking the contraceptive pill when I was 38.

I had no period cramps after that and did not suspect anything was wrong. A routine yearly visit to a new Gynaecologist changed everything! It was a one in 10,000 chance that the Doctor found an "ill defined mass" on the pelvic scan. (His partner couldn't see it!)

He sent me for a C.T. scan which picked up that my left kidney was abnormally swollen, but still the mass could not be identified and was still described as "an ill defined mass". This then led to me being referred to a Urologist who preformed a Cystoscopy.

The ureter was so narrow that they couldn't get the scope up the tube. A week later I went in for "exploratory surgery". They cut me from my navel down. There they found that the "mass" was endometriosis that had grown onto my bladder and had pressed against the ureter, causing it to narrow & harden, therefore causing my kidney to swell.

They re-sectioned the ureter(cut out the narrow hardened section and re-attached it to the bladder)and cut away most of the endometriosis they could from the bladder. (A two and a half hour operation!) Two months later I went back to the Urologist complaining of frequent urination, he booked me in for a cystoscopy the next day.

Here they found that the endometriosis had now started growing inside the bladder at the site where they had re-sectioned the ureter. This was now threatening to block the tube from the inside!

Two weeks later and the Gynaecologist and the urologist have yet to decide what definate course of action to take. One thing is for sure that I have to go back into hospital to have the endo lasered from the inside of the bladder, and the posibility of re-sectioning the ureter again is on the cards.

This would mean that I would be going into hospital for the 5th time in five months! Endometriosis has now become almost life threatening to me. There is no question that if I do not have the surgery it will continue to grow and possibly block the ureter and cause me to lose the left kidney.

The most frustrating thing about all of this is that the doctors dont really want to do a complete hysterectomy because of my age (apparently I am too young!.. I turn 40 this year)I say if it is going to halt the endometriosis then do it! The constant waiting for decisions to be made is killing me!

Are there other women out there that have had the same endometriosis threat as me?


Name: Anonymous

Title: Endometriosis and now kidney problems

It took doctors 20 years to discover my endometriosis. Now 17 years later - I now have left kidney problems. This is the side all my endo seemed to appear. My endometriosis is not contained in my female organs. I had - what I thought to be kidney stones and a cyst two weeks ago - but now discover my left kidney has been separated or the top part cut off from the bottom part (closed off).

I kept telling my doctor I felt it has something to do with endometriosis, so after several CT's and a dye test of my bladder/kidney - they are believing me more. So now I am going for a CT/Dye test.

Apparently the top part of my kidney is somehow getting urine in it and when it builds up - since it can't drain - it appears to act like a cyst or my endometriosis is the cause of these problems. Bottom line - is probably kidney surgery to remove the top section of my left kidney.

Name: Anonymous

Title: Endometriosis just doesn't stop after hysterectomy

I had stage 4 endo in 2002 (i was 38) and resulted in a partial hysterectomy. It had penetrated my colon which had to be resected and my ureters were wrapped tightly with endo, and i had heaps of endometriosis in my lower back - a 4.5 hour operation removed all of that.

Over a series of subsequent ops, i lost both of my ovaries. Amazingly my body continued to produce estrogen for another 8 years afterwards(!) - apparently the adrenals will suddenly start making estrogen ... and we all know that estrogen stimulates endometriosis.

Over the past 2 years i've had excruciating pain under my right rib in my back, that radiates down into my abdomen and sometimes, lesser so, on the left side. I'm quite sure that it is endo on my kidneys or even my large intestine; however having run out of money, I can't pay for anymore surgeries myself and i'm really not sure if this is really the answer.

I had my appendix taken out two years ago when it all started when i ended up in emergency but i'm quite sure it wasn't my appendix since the pain is still there.

So in summary, whilst the hysterectomy for me had to happen since i was completely riddled with it, it didn't help to stop it progressing.

Over the years my research has pointed to certain foods imitating/containing estrogen (like dairy)and enticing endometriosis to grow uncontrollably - i only need to drink a hot chocolate to get hot flushes for the day. With loads of painkillers now in my drug regime and sick of surgeries, I am therefore moving towards a wholesome vegan lifestyle with lots of raw foods to get this thing under control by my own hands.

I'm sick of being sick and having just lost my job due to being sick all of the time, i'm running out of options.

Name: Anonymous

Title: I know how you feel

I had a hysterectomy 10 years ago at the age of 32. I was left with my right ovary as I was too young to go without. I pretty much went into a hellish menopause not long after but began to experience frequent urine infections and renal colic.

This went on for a few years until I was rushed into hospital very poorly. I had pyelonephritis, and my left kidney was extremely swollen too. My ureter was so restricted that the surgeon couldn't get the scope up either. I had a stent fitted but suffered from continued infections and wide spread MRSA.

This went on for a year until I was operated on by Gynae and Urology. My op took 6 hours and my ureter was re-sectioned. I was pretty well after that and symptom free from endo, despite being on high doses of HRT. I cannot function without it.

The past 2 months I have had a recurrence of passing blood and very painful urine infections twice and it feels just how I felt when my kidney was blocked.

I am going to go back to my Dr and hope this will be investigated. My left kidney is permanently damaged due to the infections and hydronephrosis. I endured it for about 3 years but I am not going to let my other kidney be destroyed by endo.

I don't regret having a hysterectomy, I chose to. I have severe endometriosis and my quality of life was very poor prior to this.

I wish you well and hope your health can be improved. So many of us suffer at the hands of this incurable disease yet so many people don't know what it is and a cure still can't be found.

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