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?


COMMENTS

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.











Comments for Endometriosis on the kidney

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Nov 13, 2017
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Kidney Trouble
by: Julie

I have severe endometriosis. I have lost my uterus, ovaries, appendix and gallbladder to this disease. It has infiltrated my bowel and kidneys as well but since I need those I still have them.

My most recent (July 2017) surgery involved removing an over 20 cm long endo-cyst attached to my bowel and left ureter. It was during this surgery that I was diagnosed with endo of the kidneys.

Both of my ureters are so narrowed and hardened that doctors could not put stents in for me and I nearly died when my right ureter was cut leaving my left kidney to do all the work- my left has next to no function so with my right compromised I came dangerously close to kidney failure.

I am on lupron now. Hoping that stops the advance of this disease. I am 44 with young children (11 and 13) so I hope my kidneys can give me a few more years.

Jul 11, 2017
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Endo in kidneys
by: NurseInCO

I was diagnosed a year ago with endometriosis inside of both of my kidneys and left ureter (in addition to a few other spots in my abdomen and pelvis.) The Dx came after a year and a half of gross hematuria, hydronephrosis, pyelonephritis, back and groin pain.

It took several CTs, MRIs, cystoscopies, kidney biopsy, etc. and finally a smart female nephrologist who put the cyclical nature of my bleeds together with my history of fibroids and family history of endometriosis together.

They ordered a CA125 test which is typically for screening ovarian cancer but is also elevated in endometriosis cases. Normal is below 35, mine was over 300. Got referred post-haste to a gynecologic oncologist to rule out ovarian cancer. They determined it was endo bilaterally inside the kidneys. Put me on Lupron Depot shots, which have eased most of my symptoms and which put me into premature menopause.

That was not a big deal to me, as I am 46 and already had a hysterectomy at 35 due to severe uterine fibroids, heavy bleeding, and pain so severe it would wake me in the middle of the night in tears. Still have my ovaries, and would not mind having them removed except for the fact that I've already had multiple abdominal surgeries & I form adhesions like glue everywhere. Each new surgery makes them worse & I don't need any new problems!

My advice to anyone suspecting endo in the kidneys, bladder, ureter, or anywhere really, is to bug your doctor for a CA125 blood test to see if it is suggestive of endometriosis. Then try a MRI specifically looking for endo. The Lupron Depot shots are very expensive in the U.S. so make sure you have good insurance in place. The shots have loads of side effects, too, so it's really most appropriate for those at risk of losing vital organs to growing endo.

Mar 16, 2017
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Still in terrible pain! Advice is welcomed!!
by: Sunny

Like most of the comments I'm seeing here, I also experienced long term pain with periods and terrible constant back pain. I had a partial hysterectomy in 10/15-- in fact, I was thrilled I'd finally get some relief.

I had been diagnosed with stage 4 Adenonyosis. This was to be an hour surgery to remove; however, once the dr's were in there they discovered I had soooo much Endometriosis that my surgery now went on for close to 4-5 hours.

I remember my dr saying, "we left your ovaries, but took everything else. You are going to feel like a new person!" Well here it is 1 year and 5 months later and I still have ALL symptoms that I had pre-hysterectomy! (Well no bleeding)

Now, to add to the list, I have such excruciating pain when I go to the bathroom in my lower/left abdominal area down to my groin and into my back. This is the same pain I've learned to deal with and live with for so long but NOW, it's worse than ever. In fact, I immediately thought maybe I have a uti/bladder infection or possibly kidney stones?

This is so frustrating! And the pain is constant! Dr's look at me like "oh great, she's back in here again." I can't sleep well, I always have pressure as if I have to go to the bathroom and now everything's worse?!?! I'm also experiencing lots of fatigue and headaches. I just think they're missing the root cause to my issue-- they need to stop treating the symptoms and figure out the real reason I'm STILL in so much pain!

Does endo travel to other areas of your body even if it's been "removed" ..? Any advice, suggestions or insight are very welcomed.

Mar 13, 2017
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I lost my left kidney due to Endometriosis
by: Deana

For at least 5 years I felt like I had to pee all the time... I started getting pains on my left side and went to the Dr... It all came down to me having surgery On December 7, 2015 where the Dr removed my left kidney because endo strangled the ureter and caused my kidney to not be able to drain leading to swelling and killing my kidney. This is a real issue and anyone with endo needs to be aware!

Jul 28, 2016
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Endo and kidneys
by: Natasha27

So relieved to read these comments!!! I was just hospitalized for ANOTHER KIDNEY INFECTION. Ive had several kidney and uti infections this year--monthly and some I can beat on my own early and some i end up on the ER.

I keep bringing it up to my gyno and gp wondering if my frequent infections could be the spread of my endo and they have no response. Once again I have another round of appointments with my gp, obgyn and just added a urologist (yesterday after getting out of hospital).

I have another ct scan with contrast and cystoscopy already set, but I want to show my other two docs all of these posts because we all sound the same....THANK YOU!!!! I have docs and nurses looking at me like I'm faking it or an addict or something. I'm so exhausted by trying to find an answer when deep down I know what it is. Xoxox and keep sharing everyone please!!!!

Apr 04, 2016
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it keep growing
by: Anonymous

At 38 a partial hysterectomy, 5 yrs later my right ovary covered in endo surgery, 8 yrs later the same thing with my left.

I'm 60 yrs old now. The endometriosis has taken over my organ's. I lost one kidney, gallbladder, and now I'm insulin dependant, all because of endometriosis. The pain is unbearable.

Mar 24, 2016
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Thank you!
by: Anonymous

Back in 09 i went in to have a grapefruit sized ovarian cyst removed. A routine 2 hour surgery turned into 10 hours and I almost died. I woke up with my husband holding my hand saying- honey, they had to remove all your lady parts.

I had endo (stage 4) all over every female part, it had also spread up my ureter tubes. Because of the stress on my kidneys from the surgery, it caused renal failure. 10 hours later a second surgeon had painstakingly scraped as much endo off my tubes as he could.

I was stuck with a stent for almost 6 months. Endo is such an unknown and unexplored disease. I applaud you.

Oct 25, 2015
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ENDOMETRIOSIS
by: Anonymous

Endometriosis that severe can only be fixed with surgery. It's a laparoscopy by which like 2-3 tiny incisions are done on the abdomen and surgery is performed that way. Medicine has come a long way in the past 20 years.

I'm going through menopause now, but less than 2 years ago, I was going through what you had described. Every time I would get my period my right kidney would bleed. I would be in hospital with narcotic IV for a few days. The pain is worse than childbirth. You need to find a doctor willing to do a laparoscopy and to preserve fertility. Some doctors might not want to do it because endometriosis can reoccur, which is why you need a good doctor.

Good luck.

Oct 22, 2015
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I need help
by: Anonymous

I'm 17 and I have endometriosis in my urethral tubes, I've been peeing blood, when I get my period, it's absolutely crucial pain. Well they want to try to stop my period but they can't and doctors have tried everything! So every time I get my period it hurts so bed I've been in hospitals for 2 weeks every time.

No-one seems to know what to do next and I'm only 17 and too young to get a hysterectomy. Does anyone have this same problem and know a good doctor to see that may help. At this point I'm willing to try anything. They said my case is harder then most because it's in a rare spot, I have complications with medicine and I have Von wildabran disease, which a a bleeding disorder.

Please someone I'm sick of living with this pain and especially only being 17 years old, I'm missing a lot of school, so please if anyone has ANY suggestions please help!

Apr 22, 2015
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Endometriosis and kidney pain
by: Anonymous

What a relieve that I am not alone, I was diagnosed with this horrible silent killer 5 years ago.

I had my son after my 1st op which I was told I will never have.

2 years ago I started with severe pain, like one of you mentioned Doctors treats one like you are a hypochondriac which is so frustrating.

I am currently in hospital for severe right kidney pain and went for my 1st ct scan today praying that something is done after this.

I am beyond frustrated as I have lost all hope, I have also asked for a hysterectomy but also due to my age was refused, but now reading all the comments it does not stop the disease.

I pray that all works out for each and every one of you. God bless.

Mar 05, 2015
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Confused
by: Heather

I've had problems with my bladder and kidneys my whole life. I was diagnosed with Interstitial Cystitis about a year ago. I had the surgery to look for endometriosis about 4 years ago, where they also took my appendix.

Dr said she didn't see any endo but she lasered around anyways. Well I felt good after that so I never knew if it was my appendix or me actually having endometriosis. Pathology on my appendix came back fine. So now with my IC and possible endometriosis I have been having terrible pains with my right ovary and kidney and problems with chronic constipation. We are talking going all week and not having a BM.

I'm just wondering if it is endometriosis could maybe it be involving my right kidney, ovary, and colon? Because I have no problems with any organs on my left side. Only the right side.

Sep 15, 2014
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Lost my left kidney to endometriosis
by: Jackie

I never in my wildest dreams thought endometriosis could cause me to lose my left kidney but it did. I even had my endometriosis completely removed 5 years earlier with my hysterectomy. It definitely is a silent killer. I urge everyone that has this disease to demand that your ob/gyn do an abdominal ultrasound or c.t. to make sure this stuff doesn't steal from you what it stole from me. This is especially hard for me because my father died of end stage renal failure and I could of saved his life with a kidney I lost to this disease.

Sep 10, 2014
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Your symptoms are very similar to mine.
by: Marisol

I'm showing to my doctor. I had a trachelectomy back in 2006 for cervical cancer back in 2006. The funny thing is that my pap was normal only 6 months earlier, and my HVPv test was negative. My cervical cancer was possibly genetically linked. I've experienced edema on the right kidney, what feels like kidney stones, and scar tissue inside my bladder. The inside of my bladder looks pockmarked. 24/7 pain on the right kidney, and e-coli would magically appear completely out of the blue. The pain is located only on by right kidney. I could be stung down reading a book, then all of a sudden, I get an excruciating pain that is up there with child birth. The pain goes from my right kidney down to my bladder, and my abdomen becomes hard. After 60+ cat-scans, ER visits, MRI's, cytoscopys, IV narcotics, video eurodynamics, no answers other than they see a cyst on my right kidney and the inside of my bladder is severely scarred.

Jun 04, 2014
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Endometrioses inside Bladder
by: Anonymous

After being in pain for 2 years and having an MRI scan they have found endometriosis inside my bladder - its apparently in such a difficult place where they would have to remove a lot of my bladder and make a new opening from the kidney into the bladder and put in a stent.

My problem is not many urologists want to do the operation as I'm told its difficult and risky. I had a hysterectomy five years ago and the cells still grew. Doctors advise is try to maintain the pain and try to shrink the endometriosis with a product called Visanne which is a hormone and I really don't want to take hormones. So I'm back to square one.

May 19, 2014
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Possible endometriosis caused my appendix to rupture and my kidney stones
by: April

Despite being told it's not likely by my primary Dr. I believe my endometriosis caused my appendix to rupture last year and my right sided kidney stones 6 months later. I haven't been to my gynaecologist since I have to get a new one. (retired) I was just kind of upset that he was treating me like I was making it up. I wonder how many have been through this? I has these incidents right after my period ended and probably mistook the symptoms for my usual endometriosis cramps and bowel involvement.

I'm 34 and have had endometriosis since I could remember having a period at 11. Years of just excepting it as "bad periods" I now look back and think,missing at least 1-2 days of school or more monthly isn't normal. I have one 4yr old daughter who took a lot of patience, a hystersalpingagram and a blighted ovum to come into the world (2 months early) I believe the emergency c section could have progressed the disease also.

Anyone have any info on that as well? I am currently looking into new docs but I have noticed other women with this know more!

Apr 12, 2014
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Hysterectomy at 30
by: Anonymous

I am 30 & I have a hysterectomy scheduled for May 14 th. I am terrified! I have had problems with endometriosis & polysystic ovary disease since I was 15. Now my dr is concerned because my hemoglobin is 7.8 because I have been bleeding for the last 3 months. I sure hope a hysterectomy will work. Good luck to you & hope you get answers.

Jan 07, 2014
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Endometriosis at 12 years old
by: Anonymous

Well, I'm 16 years old and I ended up having endometriosis at 12, when I had first started my period. They didn't do too much to diagnose it because of my age, so they just put me on birth control and hoped for the best. It worked for me, so I haven't had problems the past few months. Wish you luck.

Jan 07, 2014
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Endometriosis near kidney
by: Anonymous

Hi, thank you for sharing your story. I'm in Melbourne and have stage 5 endometriosis and now I hear that my kidneys may be in danger, can you let me know of the urologist you may recommend that is in Melbourne?

Thank you.

Oct 02, 2013
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Endometriosis in right kidney
by: Anonymous

I have suffered severe pain in my right kidney for the past 18 months. It all started after my husband came home from hospital after a serious car accident!

I was diagnosed with kidney stones and got several kidney infections. I had a stent put in 10 month ago and passed a large stone, but the pain became more frequent. Almost daily!

I saw a gynaecologist on the advise of my urologist as he thought it was gynaecological related. The verdict was endometriosis on my uterus. I had a Mirena put in 3 months ago, which is beginning to help.

I decided to get a second opinion as I was desperate to get rid of the excruciating pain and my urologist said he couldn't do any more for me.
I found out yesterday after seeing a wonderful urologist in Melbourne that I have Endometriosis in my kidney!!

She said it should improve as time goes by, you can imagine how relieved I am. No more taking morphine in the near future!

Although rare endometriosis can end up in your kidneys, so if you have kidney pain ask the question!

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