In the past, I’ve researched how Endometriosis can affect the renal system, specifically the bladder or ureters, and how that could even cause blockages that cause kidney issues and severe problems.
Today, I’m going to talk about Endometriosis and the actual kidney.
A study published in October of 2018 discussed a 45-year-old woman who had flank pain and blood in her urine. Imaging studies found a mass on her left kidney. A surgery was performed to remove the suspected renal mass and a portion of her kidney, and pathology confirmed it was an Endometriosis lesion. It was removed from her “renal parenchyma,” which is the solid part of the kidney that filters blood and makes urine.
Kathryn was diagnosed with Endometriosis when she was 30 years old. Three years later, she found our blog and wanted to share her story with us. It’s a heartbreaking and devastating tale, but one many of us can relate to. And she will continue to hold her head high, undefeated.
Kathryn’s Journey: I suffered a horrible car accident in July almost three years ago. The bruising from the seat belt was so bad it took months to heal. Then, in December six months after the accident, I collapsed at work in crippling pain and had to go to the hospital. There they found cysts on my right ovary and uterus. One week later, my gynie is telling me a protein in my blood that detects ovarian cancer which should be no higher than 2 was 171. The next three months I was in a horrible nightmare of doctors telling me I would need a hysterectomy and chemo and would be fighting for my life. I had to make the agonizing choice of pulling my organs out when it wasn’t really a choice at all… And I did it with peace and as much grace as I could. Another month later, I underwent surgery. When I was awake after the tumors on my ovary had been benign and what it had actually been was severe endometriosis. He cut it out, but refused to remove the pipes causing it. When the surgeon told me it would be back, I sobbed… I don’t know why… But I was devastated. Six months later the pain returned. I had been fully cut open from stem to stern the first time. The second time they did a laparoscopy. And discovered the ovary that had the tumor developed a blood cyst that had engulfed the entire ovary. Worse, my fallopian tube was now being twisted and pulled into the same ovary. My gynie did not realize what he was getting into as the sonogram didn’t show much… But he said my tube should be a twizzler and my ovary a walnut. Mine had become a churro and a softball… Two surgeries, six months apart, with no help or sympathy from my now ex-husband… And they still wouldn’t remove all of it… I wanted to have a child of my own but…. God had different plans for me… It still hurts… And now it’s back. I found Lisa’s blog and was overjoyed I was not alone… That the bitterness and hatred of this disease is shared by many sisters. But I can’t do this any more. I want my life back. My endo was so bad it made a blood test show insanely positive for cancer. And the real kicker is that when I was suing the bastard who hit me in that car accident… My insurance company told my lawyer that it sounded to her like a blessing in disguise… I may never have found out there was a problem if I hadn’t been STRUCK by a car. The cruelest part is her daughter was going through chemo for ovarian cancer herself…. I want the pain to stop. It hurts knowing I cannot have children… And I am devastated when I ask myself “why me!” I had been fine up until that car accident… And since then… I’ve had nothing but pain bitterness and rage… And yet, I march on… Because I will never give this Despicable disease the satisfaction of beating me… EVER.
Words of Advice: Go to your gynie regularly and make them aware of your symptoms and pain level. Try to exclude as many triggers as possible… I am a migraine with aura sufferer and cannot have hormonal birth control which is one of the best defenses against endo… But do not give up and find a community like this one that offers support and love for all suffering and dealing with this devastating disease. Never let your doctor downplay your pain or your gut feeling. If they don’t help you then find someone who can. Don’t suffer alone… I thought I was alone… But this blog showed me that I really am no less a woman and no less beautiful even if my plumbing is yanked out. And remember… YOU ARE FABULOUS!
The Last Word: Please keep writing and updating your blog. I found it just by searching if alcohol affected endometriosis. You gave me more information about my health than my doctor ever did. Thank you… So much! And I love the blogs name.😊
If you would like to contact Kathryn, please feel free to e-mail her.
I want to send a special Thank You out to Kathryn for being brave enough to share her journey with us today! You are NOT alone in this, and you never will be again. You have my e-mail address…and I’ll forward you my phone number. Please feel free to use both as often as you wish. Much love. And sending hugs and smooshes your way. ❤ Yours, Lisa.
And if YOU would like to share your story, I would love to share it. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.
Lakia was diagnosed with Endometriosis when she was 29 years old, after suffering with symptoms since the Sixth Grade. Now she’s 30, living in San Diego, and she’s found our little support group. I met Lakia just a few weeks after her diagnositic surgery and she’s recently undergone a difficult decision for her second surgery! Lakia has proven to be an amazing and incredibly strong woman, and someone I am proud to call friend. Her story follows…
Lakia’s Journey: I always thought in my mind that my reality was normal. But what is normal? My first period was in sixth grade. I remember being so excited because I finally felt like a woman! I stuffed my bra everyday, secretly shaved my legs, and wore tinted lipgloss. But that first period felt like a rite of passage. All of the boys will like me now! Little did I know what was ahead…
An article was published on October 30, 2016 in the International Journal of Clinical and Experimental Medicine, which caught my interest. We know that Endometriosis can grow in a lot of places other than the reproductive organs and pelvis. This study found Endometriosis growing within a muscle: the psoas major muscle.
The pso-what-is muscle? Well, that’s what I said.
I have heard from several EndoWarriors that they suffer from leg pain; whether it be their hips, upper thighs, or radiating pain down their leg(s). Today we delve a bit deeper into leg pain complaints and Endo. Have upper leg pain? Lower back pain? Tailbone pain? So do a lot of people…but so do a LOT of women with Endometriosis. A 2011 study surveyed 94 people with Endometriosis. Of them, 51% complained of leg pain. Cysts may also be contributing to leg and lower back pain. And although you may have some of these symptoms and think you have sciatic Endometriosis…please be aware that it is considered incredibly rare. And it may just be that your symptoms are a result of pelvic floor muscles being too tight (pelvic floor therapy may help) OR that adhesions and/or Endometriosis has pulled your anatomy out of whack. But, please, do read on:
Marixsa is a fellow blogger and Endo advocate. She was diagnosed when she was 28 years old. Now 33, her story is a heartbreaking, yet encouraging, one. Almost two decades of suffering without a diagnosis, being told she was exaggerating, living in fear of intimacy, missed diagnoses (not misdiagnosis…but literally doctors not seeing her Endometriosis while in surgery), followed by a myriad of additional surgeries, emotional rollercoasters, fertility treatments, and miscarriage. Although scarred, Marixsa is truly a strong and beautiful Warrior, rich in faith and determination. She continues to fight, for herself and for other EndoSisters. And I hold her among my heroes.
Marixsa’s Journey: Like so many women, endometriosis affected me years before I was diagnosed. It’s been quite a journey, which is why this section is so long. Here’s where this road has taken me:
Nadia is the team leader for Team Zimbabwe. They’re putting together the first ever EndoMarch in their country and are hoping it will be a great success. They are also hosting a February 27, 2016, awareness campaign with guest speakers to try to not only raise awareness of our illness, but hold in-depth conversations about possible causes and future treatments. Nadia and I have been talking for the past several days and she’s allowing me to share her story with you today.
You’ve likely heard that Endometriosis can grow in all sorts of places inside the body. Well, the bladder and urinary tract are no exception. Endometriosis implants can grow on or inside the walls of the bladder or along the urethra.
Common symptoms patients may complain about with bladder Endo are frequently needing to pee, pain when the bladder is full, painful urination, and an urgent need to pee. Some also suffer from blood in their urine when they’re on their cycles (may be hard to distinguish…given the natural course of what a period does…). This urine-blood may not be perceptible to the naked eye and require a lab test. And as usual, many EndoWarriors only have these symptoms during their periods; others have them 24/7. It should also be noted that many with bladder Endo don’t present any symptoms.
There are (at best guess) 176 million people born with a uterus worldwide who suffer from Endometriosis. And it’s estimated that 5 million in the United States have Endometriosis. 1 in 10 supposedly have, or will have, this disease. One. In. Ten.
An incurable, recurring disease which causes pain and infertility, among many other symptoms. A revolving door disease which the “Golden Standard” of treatment is either constant prescription medications, or surgery, or both. And, once removed, it will more than likely grow back and cause the same pain and symptoms, sometimes much worse than before. And the only tried and true way to diagnosis the disease with with surgery!
So one thing hit me today. This disease is a driving economic force! What costs are associated with Endometriosis? As I live in the USA, my curiosity was toward the United States prices. If you live elsewhere and are curious, I encourage you to figure this out. For all of you living in the States, let’s find out together!