Kidney Failure: The Endometriosis Plot Twist of Nightmares

Kidney Failure: The Endometriosis Plot Twist of Nightmares
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It’s spooky season, and like every year, I have mixed feelings.

I’m an introvert, so the idea of strange kids coming to my front door horrifies me. I’m not OK with scary clowns — the regular ones are terrifying enough. But I do enjoy a fright during a scary movie. I’m the type who will scream at the slightest hint of suspense, then giggle like a madwoman to shake it all off.

Life with endometriosis is full of suspenseful events: the opening of test results, waking up from surgery to learn which organs are still intact. Or, as I experienced recently, silent organ failure.

It all started with a passing reference to my kidneys.

“It could be a sign of kidney failure.” This is what the doctor testing my urine two weeks ago told me. I am now due to have additional tests, including multiple blood samples and imaging tests. I also am being referred to an endometriosis specialist.

Yet, nothing came easy. At first, I didn’t even react when the doctor mentioned my kidneys. My biggest fear when it comes to endometriosis is that it develops into a form of cancer. Being informed I was showing signs of kidney failure felt akin to being told I had been nominated to a Grammy when I only sing in the shower. It felt unrealistic. So, I forgot about it for a while.

Two days later, I was wide awake at 2 a.m. when the thought dropped into my brain: Endometriosis and kidney failure — it’s a thing. My job as a science writer means I am continuously researching and reading medical documents, so I knew this.

Endometriosis can spread to one or both of the ureters, affecting kidney function.

While this is rare, everything in endometriosis is “rare,” because there is not enough research. And because kidney symptoms can be easily mistaken with regular endometriosis symptoms (lower back and pelvic pain, discomfort when urinating), it is only discovered when it is too late.

Enjoying the little things … and emailing my doctor repeatedly. (Photo by Jessie Madrigal)

The next morning, I emailed my general practitioner. She responded that because I was on hormonal medication, it would be unlikely that things would worsen. But the truth is that there is no medical evidence of that. Hormonal medication simply manages symptoms. The disease can happily carry on doing its thing, and since it behaves like cancer, it can spread elsewhere, slowly corroding essential organs.

I sent another email, deeply apologetic but insistent. I now have the appointments scheduled to hopefully get some answers, and possibly save my kidneys.

Emotionally, I’m riding a roller coaster.

Since last week, I have made three extravagant purchases, including a gadget that froths my oat lattes to barista levels. I have cried watching “Buffy” and listening to poet Andrea Gibson.

I told a few friends, only to immediately ask them to keep schtum. It felt sickening to think about how others would view me, Jess, the one with endometriosis. There is nothing more deflating than missing someone, and having them only contact you after seeing endometriosis on TV: “Hey, your incurable disease is on the news. Did you know?”

I also didn’t want to remind others of yet another failure of mine. Another biological flaw. “There she goes, always sick. Who would want to hang out with her? Who would date that mess?”

Except, this time, it’s my organs failing me.

Eventually, I used Instagram to raise awareness. No doctor had ever warned me about silent organ failure. No one reminds us to keep an eye on our kidneys and have them checked if we suffer from random UTIs. I felt for the sheer number of endometriosis patients ignorant of this, just like I was.

The best response I got came from the coolest of guys: “Kidneys are for the weak.” It made me giggle and feel badass and understood. Then, I went back to being teary.

I didn’t want concerned messages or pity.

I didn’t want those who generally ignore my existence to suddenly feel guilty and reach out. It all became too much. So, I closed my social media and spent the weekend hiding under a blanket, only moving to chase my dog Jarvis around or take him for a walk. We got soaked during one of our outings, and I cursed the universe, yet felt super alive. Today, I may cry a little when no one is looking.

Sausage dog demonstrating how to do life … daily. (Photo by Jessie Madrigal)

In public, I will be walking Jarvis while wearing my favorite cowboy boots paired with a leopard-print coat. Because that’s how I roll.

My kidneys can bloody well keep up.

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to endometriosis.

Jessie is a writer living in the South of England. She was diagnosed with complex endometriosis in 2016 after two decades of chronic pain, PMDD, and suffering from other health issues since the age of 12. She is a lifestyle and science writer, but has also produced several screenplays and short stories. She is also a lip-synch assassin, a coffee snob, and Madonna’s biggest fan. In 2019 she ran The London Marathon, although her favorite pastime is curling up under a duvet with her two sausage dogs nearby. She writes about periods and endometriosis because she wants to help improve the lives of anyone diagnosed with this disease
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Jessie is a writer living in the South of England. She was diagnosed with complex endometriosis in 2016 after two decades of chronic pain, PMDD, and suffering from other health issues since the age of 12. She is a lifestyle and science writer, but has also produced several screenplays and short stories. She is also a lip-synch assassin, a coffee snob, and Madonna’s biggest fan. In 2019 she ran The London Marathon, although her favorite pastime is curling up under a duvet with her two sausage dogs nearby. She writes about periods and endometriosis because she wants to help improve the lives of anyone diagnosed with this disease

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15 comments

  1. Elizabeth says:

    Jessica, I was diagnosed with stage 4 endo after 2 decades of misdiagnosis. I am so happy I found you and your website. You give me hope and courage. Would love to connect if that is possible.

    • Thank you so much for reading Elizabeth, and your kind words. I overshare publicly once a week 😉 because I believe there are so many half-truths and myths surrounding this disease. We need proper treatment. We deserve to be heard. I only wish for others not to go through what I went through, and what I am currenlty experiencing. Hit me up with a message whenever xx

    • Endolady says:

      Hello. I have this I think. I have had my second period from my urinary tract. I sound like lunatic telling the GP. They always hit me with, ‘are you sure it’s not your vagina?’. I mean youd think after 38 years I know the difference?

      Had ultrasound that showed fibroids, cystoscopy was clear waiting for CT results. I wonder if any endometriosis of the bladder will show up. Btw I found this by chance when I typed ‘period leaving urinary tract’. I have a science background and PhD and currently am steering my gps to various tests. I told one gp I think I have an infection after my cystoscopy and she said ‘ oh is that where they put a camera in your vagina?’ I’m like erm no in your urethra. I’m fed up! And in pain.

      Do you think CT scans will show it?

      • Gah! I so feel you!!!! I am so new to the kidney thing, and my first step is to test my blood and see what markers can be seen. The issue with any imaging tests, when searching for adhesions and anything endometriosis-related, is that adhesions and scar tissue can occur at a very deep level, or hide behind organs… making it tricky to spot. I hope they can find the source of your issues.

        But yeah, so many doctors just don’t know much about the procerdures that we need to undergo to get answers. It really is a case of us doing tons of research, and then, veeeery politely 😉 guiding them towards a path that works out for us. Hang in there x

  2. Doreen Patterson says:

    I am lucky.I was diagnosed with stage 3 Kidney failure about 5 years ago.Although Ive had abnormal Kidney blood test results for about 20 years. In the UK, I saw a Kidney specialist who says I only have stage 3 which is basically a change in diet and monitoring via blood test. The change in diet, well you ard doing most of it anyway. The funny thing is not one of them has suggested the link to Endometriosis.😆

    • Exactly Doreen! Even my own GP seemed unconvinced by the link to endometriosis… it’s all so exhausting, and not even shocking anymore 😉 Thanks so much for reading, and taking the time to comment and share your story.

  3. Kristen says:

    I had no idea until reading this that taking the birth control pill does not stop endo from spreading. I was always the most paranoid of my endo spreading to other organs or paranoid thinking I may need another laparoscopy. I had my gallbladder out 2 years ago and the Doctor said it looked like a 90 year old persons gallbladder & its the worst one he’s ever seen. Also that my birth control pill could possibly have had something to do with that. The #1 reason why I am taking the pill is for it not to spread. I supposedly have a mild case of endo. But I was told this after my laparoscopy 8 years ago. I have not met a Doctor so far that has any real knowledge about endo at all & it is really very frustrating. I have been on the same pill since I was 18 and now I am almost 42. I just 3 months ago changed my pill to a little lower dose because my blood pressure was high. Thank you for sharing.

    • The best thing I did was finding an endometriosis specialist, who was quite honest about the treatment I was on. The hormones I take are supposed to manage my most life-disrupting symptoms, but he never mentioned the word “cure”. The truth is that there is no evidence that any hormonal treatment stops the disease, but also, it’s important to remember that for some, that may be the case. I am still to know whether my disease has spread. Unless I do a laparoscopy, I won’t know what’s what. Don’t lose hope, just stay aware, and push for expert advice. Thanks so much for reading Kristen.

  4. Elizabeth B says:

    I look forward to you post every week. No one in my circle had ever heard of endo before. I love seeing your dogs as well. 🙂

  5. Angela W. Graham says:

    I’m so Happy to connect with other women that suffer from endometriosis and understand the torture it causes. I have been battling for years. Partial Hysterectomy in 2007, 3 additional surgeries after. In 2018, my MD went back in to remove the fallopian tubes and the rest of my cervix. Still having severe rectal spasms. Constant UTI’s blood in the urine. Severe constipation with rectal bleeding. 1 month ago, I visited the emergency room due to severe swelling in my legs, feet and ankles. Negative for DVT.MRI of abdomen and pelvis done. Sent to colorectal. Saw MD and during the rectal exam could feel the nodule/growth. Ordered Stat colonoscopy and endoscopy. Done the same week. Biopsy performed on tumor. Tumor is located in the mid-rectum. Very large in size. My first thought was Cancer. MD took my case before the tumor board. Recommended Sigmoidoscopy to Biopsy the tumor. Pathology results determined Stage IV bowel endometriosis. I wS shocked. Who would have thought endometriosis could cause so many problems? I’m scheduled for a bowel and vaginal resection. Im so happy to know my diagnosis and I’m finally being heard. I just want to be normal. So tired of constantly being in pain. Being sent from doctor to doctor with no help!!! Always tired. Functioning in the midst of dysfunction. Endometriosis I’m taking my life back. On November 17,2020 please say a Prayer for Me.. Thank you for being transparent and helping others ❤…
    #IWillDefeatEndometriosis

    • Iris Nira Smith says:

      I’m praying for you too Angela! You are a fighter! For each of my surgeries including the vaginal punch biopsy and pudendal nerve testing (barbaric test!) one scripture that I repeated over and over was Psalm 34:4, “I sought the Lord, and he answered me; he delivered me from all my fears. (NIV)” – I will pray this verse over you. I have my MRI on Nov 20th (same week as your surgery), you will be in my thoughts and prayers.

  6. Iris Nira Smith says:

    Thank you so much for your article – I definitely relate to all you shared. I was diagnosed with stage 4 (extensive) endo in 1997. I’ve endured ~23 painful years of this enigmatic disease and have developed other complications as a result of having endo: vulvodynia, interstitial cystitis, pudendal neuralgia, and severe pelvic floor dysfunction. I’ve taken Lupron for 2 years, had 7 laparoscopies, a pre-sacral neurectomy, months of trigger point injections (TrPs), nerve blocks, a miscarriage, and unfortunately I had to have a hysterectomy in 2016. Three months later I experienced intense pelvic pain and had to have pelvic floor TrPs and a pudendal nerve block along with months of physical therapy. In Nov 2018 what I originally thought were just migraines, doctors found that I was having TIAs (ministrokes) due to a rather large hole in my heart and in April 2019 I had surgery to close the hole to prevent a major stroke. In Jan 2020 doctors found I had a dysfunctional gallbladder and had to have it removed. But wait there’s more (read like an infomercial, haha!) Just a week ago I found out my endometriosis is back and am scheduled for an MRI soon to determine next steps – all in all I’m utterly exhausted, BUT I’m going to keep fighting! Endo will not win!!!

  7. Annie MacLean says:

    Hi again! I forgot to say that I was ON HRT for 16 year’s, went for a mammogram and they said that my vein’ had crystalised so I had to stop them immediately which meant instant menopause. They didn’t warn me that that could happen. Surprise!
    Please take care all. I’mm sorry if my previous post was a bit long.

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